Paralympic medalist and World Games record holder Sandy Hanebrink joins us to talk about her journey from St. Louis to the 1996 games in Atlanta. We discuss how the treatment of Paralympic athletes has progressed and where more investment needs to be made in athletes with disabilities.

 

You can find Sandy at: https://www.linkedin.com/in/sandy-hanebrink-otr-l-24432029

To find out more about the Carvan for Disability Justice and Freedom: https://thedisabilitycaravan.com

 

Full transcript available at:

Michelle Bishop:

Oh, God. Okay. Are we ready, Jack?

Jack Rosen:

Ready as we’ll ever be.

Michelle Bishop:

Oh, that’s scary and not at all comforting. *Laughs* Okay, give me a sec.

Jack Rosen:

Today we’re sitting down with Sandy Hanebrink, who is executive director of Touch the Future. She’s a occupational therapist and has worked with the Neuro-Abilities Advisory Committee for the United Nations G3ict, which is under the Convention for the Rights of Persons with Disabilities. She’s an accessibility expert and she is also a Paralympian.

Jack Rosen:

Sandy, do you want to introduce yourself?

Sandy Hanebrink:

Hey, it’s great to be here with you guys. I think you pretty much covered it, Jack. I am Sandy Hanebrink, I am all those things he said, and I’m just happy to be here with you guys today.

Michelle Bishop:

Sandy, thank you so much. We’re excited to have you here. Actually, you have such an amazing list of credentials I’ve now thought of like five different podcast episodes we could interview you for on different topics, but this one is actually our Olympic special, so I was wondering if you could start by telling us a little bit about your history with the Paralympics and how you got involved.

Sandy Hanebrink:

So actually I got involved back in the glory days in the ’80s when rehab was kind of exploding and custom equipment and things were exploding. And I was a patient at St. Mary’s Rehab in St. Louis and was introduced to an adaptive sports program at the Jewish Community Center Association. It was an adaptive fitness program that had racquetball and whatever type that, and that was my first introduction to some of the guys who were doing disabled sports. So I learned about wheelchair basketball and wheelchair tennis and racquetball during my time in that program and started competing with the local wheelchair sports program in St. Louis, as well as playing tennis. And so I got introduced because I was invited to be part of a development team for Team USA to the Pan American Games in Venezuela. And so we competed in Venezuela as part of the Team USA and got a gold medal in wheelchair basketball. The next year I played in the U.S. Open in the Quad A division for wheelchair tennis, and I beat the guys. So I kind of caught the tennis bug. And then I started learning more about different sports and competing in different events and trying different wheelchair sports events because St. Mary’s sponsored many wheelchair sports teams. So they had people doing road races and track and field, and they had a wheelchair softball team, of course wheelchair basketball, and then tennis.

Sandy Hanebrink:

So that’s where I got my start. And then after I went to occupational therapy school, I actually moved to South Carolina where my parents were. And part of what I did while I was going to school was start a wheelchair sports program and get involved with the regional wheelchair games, the state games that were happening, which was then called the Southeastern Wheelchair Games. And that’s when I started trying different sports and did field events and competed in swimming. I went on to win the National Wheelchair Athletic Association is what it was called at the time, the female athlete of the year. Got invited out to Paralympic training camps, which at that time swimming and field were out at Sacramento State where they were doing just at the infancy… Rory Cooper, who’s at University of Pittsburgh, had just started the research into elite athleticism for Paralympians. And so part of those training camps, we were part of some of the initial studies on what form and technique and endurance and oxygen capacity of people with paralysis and different disabilities and things like that and how it impacted things. So kind of in the infancy of what is now what I call the modern Paralympics.

Sandy Hanebrink:

And then I competed in the World Games for swimming and field events and got silver medal at swimming in Worlds, continued to compete at national level. I actually still have the national records for shot put discus and javelin, and a couple of swimming events which will be forever because nationally we used to do yards and not meters, and now all Paralympic events are meters in the U.S. as well, so those will never go away. So that’s pretty exciting. And then because of my qualifying in attending the Paralympic sports camps, I made Team USA, competed in the trials, and then actually made the team for Atlanta Paralympics in ’96 for both field and swimming. But unfortunately when they restructured the games, they didn’t have all the classifications and they combined like I’m an incomplete quadriplegic, so my class was… All the quadriplegic females were lumped together with two different classes of paraplegics. So I could have done prelims, but there was no way I was going to make it to finals competing against people two classes ahead of me. So I competed in swimming and got a bronze medal at the Atlanta Paralympic Games, and then continued to compete for a while until that life thing called work happened and then started working. And then I did more with coaching, youth development programs, and wheelchair sports programs, and hosting events.

Michelle Bishop:

Sandy, first and most importantly, you’re from St. Louis? Because I’m from St. Louis, and I see now why our producer Jack did not mention that to me before we started filming this episode so that I didn’t spend the entire episode talking to you about toasted ravioli, which is-

Sandy Hanebrink:

Exactly

Michelle Bishop:

Right?

Sandy Hanebrink:

St. Louis pizza and toasted rav. You got to have it.

Michelle Bishop:

Right? We could do a whole episode on that. We should. We should do a St. Louis episode. We can go, we can record there live, and we’ll do it from an Imo’s. But sorry, all that aside, I mean congratulations. Your career sounds amazing and I can’t believe you’re an actual Olympic medalist. Like that blows my mind, and thank you just for representing our country at the Paralympics. Sorry, the Olympics make me really patriotic in a way that usually only elections can. But that’s an incredible story, just thank you for joining us. And I think Jack had another question for you.

Jack Rosen:

Sandy, so before we started this interview you were also talking about some of the challenges you faced when you were involved in the Paralympics, that they didn’t really invest in their athletes at the time. Do you want to talk about that a little and how things have changed?

Sandy Hanebrink:

Yeah, I think it’s kind of the evolution of disabled sports and Paralympic sport was back in the ’80s when you started seeing more and more countries participating in the Paralympics. You saw the rehab centers as another way to improve the quality of life of people with disabilities, sponsoring adaptive sports programs and Paralympic competitive teams. You saw leagues and stuff spreading across the country. But as an individual who’s competing back then, you were on your own to fundraise for all your equipment and training and that unless you happen to be part of one of these few wheelchair sports programs that existed out there, and they maybe had some team chairs. Or like some of my first equipment, my throwing chair actually, we made, I had a tool and die shop in town make for me.

Sandy Hanebrink:

And a lot of the equipment was evolving from where wheelchairs were now custom for every day. My first wheelchair when I first became paralyzed was an ENJ folding chair. And then by getting involved in the adaptive sports program that I talked about, I was introduced to custom chairs and sports chairs. And back then our everyday chair was also our basketball chair. Very few people had a piece of equipment for different sports, other than racing. That’s when the Eagle Sports Chairs had evolved with, at that time was still four wheel racing chairs, and just starting with the three wheel racing chairs that were much shorter and not as aerodynamic and not as much technology into it and innovations and engineering that we see today where BMW even makes custom molded wheelchairs for our Paralympic racers and stuff. But in the beginning you funded yourself, so sometimes the best athletes didn’t go, but the athletes who could fundraise or had a program backing them got to go.

Sandy Hanebrink:

When you made a national team, it’s much like Paralympics now and the Olympics where the national team coach and support staff are named. But like in gymnastics we were talking about earlier, you’ll see there’s the head coach but then you see the other coaches for the athletes are there. The athletes don’t have to just listen to the head coach that doesn’t really know them and things like that. Well when I went to Worlds with swimming, I didn’t know the coach or the team leaders and so they would make tips and stuff, but you’re kind of on your own to do your training and be prepared because you didn’t train with… The teams were named and you left, you didn’t have time to practice together and train like they do now. You had a couple weeks kind of thing. And again, it was like you had to fundraise. So I would hold fundraising events and sell t-shirts and do things like that to raise the money to be able to go to competitions and then to go to the Paralympics and that you had to buy your own uniforms and everything. There was fees and stuff, and you actually contributed to support the coaches and team leaders that you didn’t know.

Sandy Hanebrink:

Well, that changed after the Atlanta Games and the lawsuits that went through that changed to where the USOC now is the U.S. Olympic and Paralympic. And so you started seeing the evolution of more camps and stuff at the USOC and that, and now where there are resident athletes, and wheelchair athletes or other disabled athletes now are also professional athletes just like our peer Olympians. And at the last Olympics for the first time the Paralympians receive the same financial compensation for medal counts. The game sites, if a country hosts the Olympics, they have to host the Paralympics. There’s been a whole evolution because that wasn’t always the case. And then the medals and the clothes and the regalia and stuff that, even at the Atlanta Olympic Games the Paralympians we didn’t get anything that was even comparable. But now Team USA is Team USA, Olympic and Paralympian, which is a beautiful thing.

Sandy Hanebrink:

But with those changes it’s been a huge improvement for elite athletes. But with everything there’s a yin and a yang. It seems like some of the developmental programs aren’t there that were once there, and some of the state games and regional games you don’t see as many of that I’m aware of. I know in our area that there once were, and the size of the games aren’t as big. Because at the state games it was a combination of recreational, emerging and elite athletes because that’s where you learned about the different sports and you kind of learned techniques and strategies, and you learned about the national team and how to be a part of national teams. You learned about Paralympic trials and classification and all the different components that go with Paralympic sports.

Michelle Bishop:

It’s fascinating to me just how much it’s evolved from what you’ve described. It’s just the Paralympics have come so far, it’s really incredible, in a really a fairly short period of time. I mean what you’re describing was not that long ago, but it strikes me that you talked about how state and regional games seem to be on the decline, and I’m wondering if you have thoughts about how we could get more disabled youth involved in sports?

Sandy Hanebrink:

Yeah, I think it’s critical to start… We’re starting to see more and more facilities and infrastructure in place since the ADA, of course it’s been 34 years and we’re just now seeing adaptive playgrounds and access, better access to gyms and training facilities like fitness clubs, tracks, being able to park and have a route to a track and things like that. You’re seeing more and more in the media. Some of the national governing bodies are much more advanced and inclusive than others. Like local swim meets, if they’re part of U.S. Swimming, they can compete at their neighborhood swim club. Individual sports it’s easy to do, but then you’re always competing alongside your non-disabled peers, but against the clock. It’s still critical to have those competitions where you’re in a heat with people with your own classification and that.

Sandy Hanebrink:

So I think some of the change happened just with the changes in our healthcare paradigms and rehab and how long people are part of rehab facilities in order to be in that community and engaged. Certainly major rehab centers like Lakeshore Foundation is also a Paralympic training site and research center, so there’s ongoing program there. But then in my local community, we used to have wheelchair sports teams for track and field and basketball and tennis, and they kind of went away and now they’re starting to come back. It’s that wax and wane. And then when the Paralympics came under the US Olympic Paralympic, now it’s about elite sport and there’s all these feeder systems from Little League and local recreation and high school and colleges and professional races and things like that that are already in the mix for Olympians. And those individual sports like road racing, hand cycling, swimming, tennis are in that mix, but wheelchair basketball and softball and some of the team sports, sitting volleyball and that, those have to be unique leagues, right? Because those are only people with disability sports.

Sandy Hanebrink:

And so the USOC, Olympic Paralympic organization is about elite athleticism and they’re not… And they do the youth development just like they do for Olympics and that, but the people who compete in those development programs are already involved in recreational level and competitive club teams and things like that. And we just haven’t gotten there yet with Paralympics. A lot of focus was on our disabled veterans with the Paralympics because, let’s face it, we have young, strong, athletic people who thankfully were there for serving our country now with disabilities and were easy to integrate into programs. And I think the focus went there and the balance of continuing youth programming and adult community program kind of slacked off a little. Then there was a resurgence of trying to do programming and build Paralympic sports clubs, and I think some focus is there.

Sandy Hanebrink:

But really how I got involved was we said, “Hey, we don’t have this and we want to do this”. And we found, like in St. Louis, my uncle worked at Bishop DuBourg High School and they have a big parking lot. So I went to them and said, “Hey, can we paint a wheelchair softball field in your parking lot?” And that’s how we got a wheelchair softball team. In Mauldin here in South Carolina there was a Miracle League field and we got the city to make the outfield bigger so that it could accommodate wheelchair softball. And so now they just had a tournament last month that I attended to watch with teams from four different states. But the sustainability of trying to get more people into the program was what I was hearing from all of the teams, even the ones that came from rehab centers. And it’s like, “How do we get the younger people engaged?” And I think part of that’s going to have to start with it’s time for the high schools and junior high schools that have athletic teams to have them. It’s time for local rec centers to partner with the whole area in order to have the numbers they need for teams and to develop those feeder programs. And a lot of it still comes from people with disabilities just making that ask and forming the teams and keeping things going.

Stephanie Flynt McEben:

Thank you so, so much Sandy. I really appreciate. I know that we all really appreciate you discussing your lived experiences and participating in the Paralympics, and also talking about different ways that we can get today’s youth engaged in disabled sports. I know for me personally I did benefit from participating in disabled sports growing up. I was able to play soccer, I was able to participate on a swim team, and so participating in those things really does help in terms of helping with youth develop social skills and competency skills and leadership skills and various transferable skills and character development that can transfer into adulthood. And so I just wanted to know if you have any closing thoughts that you’d like to share with our listeners, any final thoughts that you have?

Sandy Hanebrink:

Yeah. I think for me I was an active athlete before I became disabled, and so being involved in disabled sports was all about what I can do, not what I can’t do. It was all about setting goals and pushing the limits and being a part of a team again. It was a way to achieve and to push things beyond what you thought you could ever do. I know like with the program we did in South Carolina, youth program… That was South Carolina and North Carolina we actually combined two states and we do some practices in South Carolina and some practices in North Carolina, and then we’d practice separately and that to make it happen. But it evolved into a Paralympic sports club. And the youth that started at four or five, six years old, some in their teens went on to college, they have families, they’re working. And when you compare it to statistically the same things that happen for youth who compete in non-disabled sports, the same benefits happen for youth in disabled sports. You develop those life skills and you’re successful and productive members of the community and you give back to the community.

Sandy Hanebrink:

And what I really love about the Paralympic movement is everybody kind of pays it forward. Like I’ve passed on my equipment to new athletes so that they could try things and get involved, other people have done that for me. People share their strategies. If my equipment broke, I’d actually had other athletes give me their equipment to use and I was competing against them. So it’s just a whole community dynamic, and to see from where we came in the ’80s where things were starting to boom with the evolution of sporting technologies, the changes in classification systems, the growth of Paralympic movement across the world to where it is today as considered equal athletes to our peer Olympians is quite amazing. The TV time, it’s part of everyday life of everyone, not just people with disabilities. Disabled athletes are recognized by the general public. It’s just the huge opportunities, and I just think it’s critical that youth sports and recreational sports for adults with disabilities be available so that we can continue to grow our teams for the Paralympics, but more importantly that we create those opportunities and those life skills for people with disabilities that should be available just like our non-disabled peers have.

Jack Rosen:

Well Sandy, thank you so much for taking the time to speak with us today. Where can the people find you? Do you have any social media or anything you’d like to promote?

Sandy Hanebrink:

Sure. Right now I’m actually part of the Caravan for Disability Freedom and Justice. So if you go to the Caravan for Disability Freedom and Justice 2024, we’re on Facebook, or The Disability Caravan. We’re traveling around the country celebrating people with disabilities, the history of people with disabilities, the resources and stuff today, and working towards the future. You can also get me at Touch the Future, we’re on Facebook. Or you can find me personally at Sandy Hanebrink on LinkedIn or Facebook tend to be the ones I’m on most. But I appreciate the opportunity and I’m just excited to be a part of it and really celebrate the growth of Disabled Sports and the Paralympic movement to where it is, this amazing competitive professional movement that it is today.

Jack Rosen:

And you can find those links in the show notes. Thank you so much for joining us today, Sandy.

Michelle Bishop:

Wow, y’all. Thanks so much to Sandy. It was really interesting hearing just how far things have come in terms of the Paralympics from where we started up through this year. And if you haven’t seen the little mascot for the Paralympics, it’s so cute. It’s that red hat that was the mascot for the Olympics, but he has a prosthetic leg. It’s super cute, you should check it out. Okay. Also, in honor of the Paralympics in Paris, Stephanie, I believe you have an on topic joke for us this month.

Stephanie Flynt McEben:

Of course I do, except it’s more of a question. And it’s something that I feel like people asked in 1982, but I wanted to know if anybody’s refrigerator is running? Get it? Because of the Olympics.

Michelle Bishop:

Oh, no.

Stephanie Flynt McEben:

Are there cricket noises that we can insert?

Michelle Bishop:

What worries me about that joke was not that I didn’t get where you were going, but that it’s an election year and I immediately took it as, “Is your refrigerator running for office?”

Stephanie Flynt McEben:

A frozen legislator? Oh, no.

Michelle Bishop:

It scares me when we’re too in sync, Stephanie, and it should scare everybody else.

Stephanie Flynt McEben:

Yeah, it’s fine. Well, hopefully you have been able to catch the end of this episode and my joke and all the things.

Michelle Bishop:

Jack, please tell the people where they can find us on social media and save us from this episode.

Jack Rosen:

As always, you can follow us on LinkedIn, Twitter, Instagram, Facebook, and Threads. And you can reach out to us at podcast@ndrn.org. Untill next time folks –

Stephanie Flynt McEben:

What about TikTok?

Michelle Bishop:

She really snuck, “What about TikTok?” in there.

Jack Rosen:

Was that what you were yelling?

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

Yeah.

Amy Scherer joins us for her fourth appearance on the pod to discuss her work covering the US Olympic Gymnastics trials, and the accessibility challenges she’s faced both at the events themselves and while traveling for them.

Check out Amy’s coverage at: https://www.intlgymnast.com/

Full transcript available at: https://www.ndrn.org/resource/ndr-july24/

Stephanie Flynt:

Do I just start?

Jack Rosen:

Yeah.

Stephanie Flynt:

Yeah. Well, we’ve got to be up. Hold on, well. Aghhhhhhh. I almost fell over Nala.

*Intro Music Plays*

Jack Rosen:

All right. Well, our podcast team has been decimated by meetings and migraines and everything else. So it’s just me and Raquel here to kick us off today. Guess what, Michelle? I’m doing the intro this time. So I guess I am a host. Raquel, do you want to tell the folks who we have on today?

Raquel Rosa:

Thanks, Jack. Today we are going to be joined by Amy Scherer, one of NDRN’s dynamite attorneys. She focuses on supporting the CAP program, or the client assistance program. She’s going to be talking to us today about a recent trip she took to Minneapolis where she was fortunate enough to see the gymnastics Olympic trials. Take it away, Amy.

Amy Scherer:

Wow. Raquel, thanks for such a kind introduction and I’m really glad to be on here today to talk a little bit about my experience. As Raquel said, my day job is as a staff attorney at NDRN, focusing on CAP, or client assistance program, VR related employment issues.

And I just happen to have a little side job that is also quite fun and I feel lucky to be able to do it. Maybe something that not everybody gets to do every day, but I essentially work as a freelance writer for International Gymnast Media. It used to be International Gymnastics Magazine, but as many things have happened over the last couple of years through the pandemic and everything, it’s now essentially a website, but it is the main media that covers international gymnastics, and it’s been around since 1956. So it’s really great to be able to be a part of that organization.

And the gentleman that runs the website and was a publisher of the magazine, I actually had a chance to meet him when I was 10 years old and just started getting involved in the sport and really fell in love with the 1984 Olympics when Mary Lou Retton won for the United States and also the men’s team for the US won the gold medal there. So that was sort of my introduction to the sport, and I was able to meet Paul Ziert, the publisher, and that’s where our relationship began, which led to my ability to work there many years later. I never thought as a child that literally 40 years later I’d be working for that organization, but it all worked out that way.

And the job, it’s interesting because I don’t think it’s that common even in 2024 for members of the press to be wheelchair users or to have visible physical disabilities. So my primary job with International Gymnast is to cover the NCAA season, which is separate than the Olympic season. These are individuals obviously who are in college, have scholarships, and there’s an entire NCAA season just like there would be for football or basketball. And I typically write a column during the season each week and then get a chance to go to attend the NCAA national championship at the end of the year. So that’s a live event, and involves going to the competition and writing about it while it’s happening, so similar to live chat, and then also going to press conferences after that.

So when I first started doing this, which was probably back in 2016 when I started to do the formal coverage of NCAA, they didn’t even have a place for a person in wheelchair to sit in the press section. There were actually five steps up there to even get to the platform where the media was sitting. And so here I just sat in another section and was not able to be with everyone else who was reporting on the competition. But actually, and I have to give credit to my friend Jessica Obern, who was there, and she was even more incensed than I was about what had happened. And she wrote a scathing letter to the head of the media for NCAA gymnastics and just said it was inappropriate and that it needed to be set up differently in order for me to be able to participate.

And lo and behold, they did respond to that very well. The next year there was actually a section on the press application that said, “Do you need wheelchair seating? Check this box.” And they really worked with me from that point on to try to make sure that I had a good place to sit and that I could see well and reach the table and reach the laptop and everything that was involved in reporting on that competition.

So it went well for a number of years. I have to say last year there was a change in the leadership so I wasn’t working with the same person. And even though there were many, many emails exchanged in the months prior to this year’s competition in terms of what I needed in order to be able to see and to be able to reach the table and everything, I got there and the table was about 15 feet tall and I was not able to see over the row of people in front of me.

So obviously that was a major issue, and it became a pretty significant thing because we found out about it just a couple hours before the competition. So we were trying to figure out what to do, and I was pretty frustrated because it’s not like this was a surprise. There were lots of conversations about it. The guy who was just in charge did not seemingly have the power to make the changes that needed to be made, and they were extremely apologetic, but obviously that didn’t really impact me to do my job and to do what I needed to do.

So after some chaos and people running around, we were able to find a place for me where I could see the competition and do what I needed to do in terms of my job responsibilities. I do have to say that once I said that I was a staff attorney at the National Disability Rights Network and that I had knowledge about the ADA, that definitely got things moving a bit more. So tip to anyone listening, if you can drop that into a situation like this pretty quickly, that does tend to wake people up. But that’s the situation in terms of doing the job with the press.

I’ve just also been extremely happy, though, with the organization that I work with, International Gymnast Media. They never thought it was a big deal that I use a wheelchair, had never done gymnastics in my life, couldn’t tell you how to do a back handspring from a technical standpoint at all. But they just appreciated I guess my passion for the sport and my desire to learn more. And I was excited to be able to find a way to use the knowledge that I had in a productive way and to be able to put it to use. Rather than just sitting at home and watching videos on TV, what could I actually do that might contribute to the sport? And they just totally embraced that.

And again, this is starting back in the early nineties, so not something that was necessarily typical. Never really had any specific discussions with them about accommodations or anything specifically related to my disability. We just made it work. And I think it was a good example, too, of for a while there, most of the interaction I had was through email or through the phone, but then when we started to be able to meet at different competitions, spend more time together, have meals together, I think they got a better view of what my disability was and that there were more things to be considered beyond just the fact that I use a wheelchair.

My motor coordination is also somewhat limited, and so that affects typing, which was part of the job that I was doing. But again, as I got to know them better, that just all kind of happened naturally and it was never a big deal to figure out how to make it work. So I just think that’s a great example because sometimes people think when you request accommodations it has to be this really formal, adversarial thing, and sometimes that is needed, but other times, especially when it’s just more of a side job like this, it just happened more naturally as I got to know them and we just figured out what was going to work best for me. So I think that’s probably the end of the job part of the discussion.

Did anybody have, so the second part would be, again, the most recent trip, as Raquel mentioned, to the Olympic trials for gymnastics in Minneapolis, Minnesota. And I am not able to travel independently, so I was lucky enough to bring along Raquel, who was travel assistant extraordinaire. And we had never traveled together so I think it was a learning experience in a lot of ways for both of us, but it also just showed that things don’t always go as smoothly as you hope they’re going to.

One thing is I use a power chair most of the time in my day-to-day life and then [inaudible 00:10:20], but I have never taken a power chair on an airplane for a trip because there’s just so many variables there. And if one thing gets broken, then you get to the other end to start your trip when you land and you don’t have a working mobility device. So it does definitely make it easier or less likely for a chair to be broken if you have a manual chair, especially if you take all the pieces off of the chair, which is what I would recommend. So I’m assuming most people listening to this probably know this already, but you would want to take off the back cushions, the seat cushions, the footrest, basically anything that is detachable from the chair, I recommend that you take off and hopefully are able to put that into the overhead compartment for the plane.

That doesn’t guarantee that nothing’s going to get broken, because I did have a trip last year where all that was done and they broke the brakes on the chair, which might seem like a minor issue, but it really wasn’t minor in any way, shape, or form because since I couldn’t put the brakes on to keep the chair from moving, I couldn’t do a transfer independently. So it really did make the chair useless until they were able to fix the brakes, which took a couple of months in order for that to happen. So it really can be a huge issue when they damage the chair.

In this case, though, we did not have chair damage, so I was very happy that we made it to Minneapolis in one piece, but there were some major issues in terms of getting on the plane. Typically, if you need assistance as a result of a disability to get on the plane, you could indicate that on the plane reservation and say that you need help with transferring in order to get onto the seat.

And in most cases, there’s an aisle chair, which is a more narrow chair that is the width of the airplane aisle. So that allows a person who’s not able to walk to get to the seat of the airplane. And so that involves a couple of different transfers, though. You need to be able to get from your own personal wheelchair onto the aisle chair and then from the aisle chair onto the airplane seat. And all this was very well spelled out in the reservation, that I was going to need help to do that, and specifically that I would need lift assistance from the aisle chair, well, from my chair to the aisle chair and from the aisle chair to the seat.

But when Raquel and I got there, instead of having two people, which would be the standard procedure if you’re going to help do a lift assist onto a seat, there was only one person. And so they were basically asking me if I could help or basically independently do the transfers without lift assistance and I basically was like, “No, that’s really not going to be possible.” And Raquel stepped in and said, “I’ll be glad to help since there’s not [inaudible 00:13:29] here.” And so she assisted with that and helped me to safely and comfortably get onto the aisle chair and into the airplane.

But I still look back at that and I’m not sure what would’ve happened if Raquel had not been there. I may still be sitting on the aisle seat or the aisle chair. They clearly did not have a plan B, even though I had indicated that that was the type of assistance that was going to be needed. Raquel, did you want to add anything about that, or anything I missed?

Raquel Rosa:

No, I think you said everything exactly correctly. I think if I could just give advice out there, it’s when we’re supporting people physically, that even if we know them, especially if we don’t know them, but if we know them, no matter what, we should be asking people, “May I do this? Can you do that? Can we do this?”

So when Amy and I were together, and I think the airplane transfer was a really good illustration of that, there are a number of buckles and harnesses and everything attached to that aisle chair. So it’s, “Amy, may I put this around your legs? May I put this around your chest?” Or in taking it off, “May I unbuckle this? Can you put your arms around my neck and I will hold you underneath your knees so that I can support you in the transfer?”

I think that communication is critical not only for safety but also just for permission and consent. I don’t think anybody likes to be touched without knowing or without being okay with it. And so that’s something that I am very firmly an advocate of. And so I think Amy and I had a really good exchange when we were together, and I think that’s a really good example of where that communication was loud and clear.

Amy Scherer:

I think that’s such an excellent point. I’m so glad that you said that. And to that end, too, it happened on both ends of travel. So both when we were going DC to Minneapolis and then Minneapolis back to DC, there were issues with the transfers on the plane. Same issue in both, with not having the correct setup to provide the assistance that I requested and Raquel having to step in there.

And as she said, it did get quite uncomfortable on the second leg of the trip with the gentleman that was trying to attach the seat belts so that I would not fall out of the aisle chair, which is kind of an easy thing to do if you don’t have a lot of stable balance abilities, because the chair is so narrow there aren’t armrests. And so in a lot of ways the only thing that in my case was probably keeping me from falling over or out of the chair were the seat belts.

But to Raquel’s point, the gentleman was not very clear about what he was doing or where the seat belts were going to go, and I was just trying to make sure that I didn’t fall out of the chair. So it was kind of an uncomfortable exchange and not at all what Raquel was suggesting that happened. And I would say that’s the case even in any situation, not just the airlines, but even Raquel and I knew each other, we were friends, but we had never done, as I said before, a travel experience like this. So it was really important for me to hopefully communicate to her what I needed or what was going to be difficult or what was going to work or not work. And anybody who’s in that situation, even if it’s a person that you’re hiring as a personal care attendant that you really don’t know or that you haven’t developed a relationship with, I think communication about what is needed is such an important part of the whole thing.

So with that, the other major issue we had, it was a great hotel overall, and they had really good customer service. We had a really good experience with the hotel staff, the restaurant staff, even the bartender at the bar that we went to several times got to know us and knew we were coming and everything like that. But there was one major hotel issue, and that was with the hotel bathroom. And it was a roll in shower, which is what I typically request because the transfers to the tub onto the shower chair are much more difficult. I was really glad that the roll in shower was available, because again, sometimes that can happen too. You request a roll in shower and you get there and all they have is a tub. And that’s not necessarily, depending upon what your physical capabilities are, an easy transition to make.

But in this case, didn’t have to worry about that. We had the roll in shower, and it was really a great setup in a lot of ways, a nice big space, a nice threshold on the shower so that the water didn’t go everywhere, which can happen with a roll in shower setup. However, there were grab bars on the walls of the shower, which is fantastic, and there was a shower bench attached to the wall, which is also usually really good because that way it’s solid and stable and it’s not going to move and you know that it’s going to be there. You don’t have to sit there and request and hope that they bring a shower chair that you can sit on.

But where the shower bench was was not at all close to any of the grab bars that were on the wall. And initially Raquel and I looked at that and we were like, how could that be? How is that possible? They’re assuming that you’re going to be able to stand up from your chair and then sit on the bench without having to hold onto anything because there wasn’t anything to hold onto. So we were pretty perplexed, and we knew that that wasn’t going to be easy for me, to just go from the chair to the bench without any additional support, and we didn’t want to end up on the floor of the shower, so we had to really be creative and figure out a way to do it without having to do the transfer.

And we got really creative. I’ve never really tried to do it this way, but we decided that it was probably better if I just stayed in my chair rather than trying to transfer. Now, obviously a manual wheelchair is not designed to be prepared for a full shower. They actually have shower wheelchairs that are designed for that, but it was a situation we were in, so we had to make it work. We ended up taking everything off of the chair. Again, didn’t have a back support, didn’t have a cushion that I was sitting on. We just put a towel down, but we were trying to make sure that nothing that would be damaged by getting wet was on the chair. So basically took everything off that we possibly could and did it that way. Just literally rolled my chair into the shower because there was no way to get onto the bench.

And it worked. It definitely worked. It worked better than I think we thought it would, and everything did dry pretty quickly, so there was no damage done to the chair. But honestly, we should never really have been in that situation of having to make that decision because all they needed to do was have a grab bar on the wall nearest the bench and everything would’ve worked much better.

But that’s been my experience with hotel rooms in general. Even when you say accessible hotel room, request roll in shower, the setups are all very different. They may be specifically meeting the letter of the law, but clearly not looking at would this work from a functional standpoint if you’re not able to stand up or transfer independently. And so I would just throw that out there for those that might not know that. And I think that pretty much encapsulates the experience that I wanted to share, unless there are other questions or comments from Raquel.

Raquel Rosa:

I think the only thing I would add is the height of the bed and the fact that there’s only one bed. So it’s a good thing Amy and I are friends because we had a slumber party.

Amy Scherer:

Very true. And I think unfortunately that does seem, and didn’t mean to, definitely jump back in there, Raquel, if you want, but I think that has been pretty indicative of my experience. As soon as you request a wheelchair accessible hotel room, nine times out of 10, it is a one bed situation. And I’ve always found that really interesting because logically it would seem that maybe if you had a wheelchair accessible room, maybe you would have somebody with you that would be providing assistance and you are not necessarily romantically involved with that person.

So it is kind of that one bed does seem to be the standard and the beds do tend to be very high. I’m actually under five feet tall, so that creates a major issue for me. And it was a trend that didn’t really exist I’d say until about maybe 10 years ago, and then all of a sudden the hotel beds got much higher just across the board. So from a disability perspective, that may help some people because then they don’t have to try to get up from a lower position. But higher beds can also be a problem.

Raquel Rosa:

I think also with the height of the bed, so we were able to make it work, but just thinking about other folks who might need a portable Hoyer or something, some other physical transferring device, the width between the bed and the wall is typically not conducive to any of that. So I know we don’t have our hotel friends and architects listening to this, although they should be. I would really encourage folks to engage people with disabilities in assessing their proposed rooms when they are sketching them out and that they actually navigate the space when there’s a mock-up of the space being built.

It’s just, like I said, Amy and I were able to make it work. I’ve done lots of travel with lots of people with varying disabilities, and so I’m used to this, but I would also say that even with being used to it, you never know what you’re going to encounter on the other side of the door. So I think it’s just really important that we are vocal about what the needs are and how those things could be remedied and that we are also very careful with our bodies and the bodies of the people who we are supporting because nobody needs to get hurt.

Amy Scherer:

I couldn’t have said that any better, but I think that might be it as far as our story.

Jack Rosen:

And we’d like to congratulate Amy on being the most frequent guest on National Disability Radio. This is appearance number four. So thank you, Amy, for joining us throughout the years.

Amy Scherer:

Thank you. I’m really glad to join, and if there’s ever anything I can do to help in the future, I’ll be glad to come back.

Stephanie Flynt:

Amy, one more appearance and we can induct you into the Five Timers Club, like SNL.

Amy Scherer:

Wow, that would be amazing.

Stephanie Flynt:

Jack, you know how we’ve been having office temperature issues?

Jack Rosen:

Yeah.

Stephanie Flynt:

So when it gets cold in the winter time, you might need to be careful about leaving your windows open because you might end up freezing your computer. Windows open. Freezing. That was probably terrible. I’m like, maybe we should do an encore joke. That was pretty bad. That was the worst joke ever. I can’t believe Michelle was not here to … Like, get it? Windows, freezing, computer.

Jack Rosen:

Thank you, Stephanie. Until next time, you can email us at podcast@ndrn.org. You can follow us on LinkedIn, Twitter, Threads, Facebook, and Instagram,

Raquel Rosa:

And keep your computers warm, guys. Keep those windows closed.

*Outro Music Plays*

In an episode inspired by the pending SCOTUS case Acheson v Laufer, Michelle, Stephanie and Raquel sit down with Julia Métraux, a journalism fellow at Mother Jones, NDRN’s own Amy Scherer to discuss her lived experiences navigating lodgings as a person with a disability, and finally we talk with Michelle Uzeta Deputy Legal Director at the Disability Rights Education and Defense Fund to dispel some of the myths put forward by the hotel lobby.

Check out Julia’s work: https://juliasmetraux.journoportfolio.com/

Michelle’s blog post countering myths the hotel lobby perpetuates: https://dredf.org/web-log/2023/07/28/acheson-v-laufer-debunking-common-ada-enforcement-myths/

Full transcript of this month’s episode available at https://www.ndrn.org/resource/panda-pod-august-23/

 

Michelle Bishop:

Hi everyone. Welcome back to our podcast. It is August in DC, which means it is both quiet and hot and somehow I am still stuck in the office. I don’t know about you guys, but Michelle Bishop and I am one third of our hosting team here on the podcast. I’m the voter access and engagement manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, one of our public policy analysts at NDRN. And fun fact, on the metro this morning I drank 19 ounces of iced coffee in 19 minutes.

Michelle Bishop:

That is so problematic.

Raquel Rosa:

And I’m Raquel Rosa. I am the community relations specialist at NDRN, and sadly, my mom still does not listen to the podcast, but I know somebody’s mom who does.

Michelle Bishop:

Oh, that’s right. We got an email from the one and only Carol Bishop, our favorite, longest running listener, or at least we thought, because it turns out she just started listening to our podcast a few months ago. And I will say this, when we were contacted by my mother, she did not contact us to compliment how good of a job I do on this podcast. She specifically said to make sure Jack, our producer knows what a good job he’s doing on the podcast. So thanks for that, mama. But Jack, why don’t you go ahead and introduce yourself to the people.

Jack Rosen:

And hi, this is producer Jack Rosen. This month we’re talking about ADA Access and hotels. What brought this topic on is the pending Supreme Court case, Acheson Hotels versus Laufer. This is a dispute between a hotel corporation and an ADA tester. So what is an ADA tester and what’s at stake in this case? Well listen to today’s episode and we’ll be discussing all of that and more.

We’re also having on Julia Métraux, a journalism fellow at Mother Jones who wrote an article about this case and talks about that article, the broader issue and her experiences as a person with a disability in journalism. Additionally, we have on our own Amy Scherer, who talks about traveling as a person with a disability. And finally we have on Michelle Uzeta from DREDF who helps dispel some of the myths that the hotel lobby are putting forward about a accessibility.

Michelle Bishop:

Whoa, that is an action packed episode. All right, well let’s get right into it then.

Raquel Rosa:

Well, friends, today we are joined by Julia Métraux. She is a fellow at Mother Jones. Thanks for joining us today, Julia. How are you?

Julia Métraux:

I’m doing well. Thank you for having me.

Raquel Rosa:

So I was hoping that you could talk to us about how this case first came to your attention.

Julia Métraux:

Yeah, so this case came to my attention. I had covered a previous Supreme Court case, the nursing home one, and someone in the disability community, a Rebecca Coakley, had messaged me asking if I was paying attention to the tester case and I had not been paying attention yet. So she nicely brought it to my attention and that’s how I personally learned about it.

Stephanie Flynt:

I’m really glad that this is getting some good coverage. I know that in reading your article it does, I know when it comes to the business community that individuals with disabilities are overly litigious, but do you feel like that’s a reflection of how our system is currently working when it comes to the ADA enforcement or what’s your take on that?

Julia Métraux:

I would say my take falls into a few different categories. The first is, as we know, the United States is a very capitalistic country, so it’s not that surprising that many of our systems also work in that way. And I have to say a bit about myself, I’m what you call an ADA baby. So I was born after the ADA came into play. When I think about the ADA, especially with Title III, when you hear these lawsuits, one of the first thing that comes to mind is with all things, they’re the exceptions that prove the rule, but that doesn’t mean everyone else. It’s like that or even a majority are. I also think another thing that’s important to keep in mind is it’s not fun to file complaints or lawsuits when you’re not being welcomed or able to access communities, stores, et cetera. It can be very almost cumulating.

It could be annoying. As I mentioned in my article, it can also be very, very bad. For example, if a private hospital doesn’t have web accessibility on their site, then people aren’t able to read a message from their doctor if they’re using a screen reader for example, or they might struggle to get into a store. I think with this case in particular, it’s also one of those Supreme Court cases where it could have a greater effect than just the initial lawsuit and rulings itself. And also like Dorin Dorfman told me that there had been a long history of using testers in this country and it’s also is currently used under the Department of Justice. So I think that’s a very important thing to keep in mind.

Stephanie Flynt:

Yeah, I really appreciate you bringing the attention to claims and filing claims and lawsuits in particular, those particular things in your article. It’s something that, I mean, for starters, litigation takes a lot of time. I don’t think anybody wakes up and goes, “Oh yeah, I’m going to file a lawsuit because it’s going to be my quickest way to resolve these issues.” And I feel like, of course, going back to the screen reader thing, which I am a screen reader user, I’m a blind person as most of our listeners know. But yeah, I mean there are times when certain websites might not be the most accessible, especially if you’re filing a complaint with a company in terms of the accessibility or even just the fact that there are some people, a lot of people actually being a minority group who is disproportionately affected by being low income and poverty, a lot of people don’t realize that they can file complaints and that they can do it.

And also too, taking into consideration the spoons aspect of it or feeling like that you can do this mentally. I can tell you right now that I’ve definitely had some complaints that I am like, “I know I need to file this, I know I need to file this, but I just do not have the mental energy to do that.” So thank you so, so much for bringing attention to that.

Have there been any surprising in the business community when it comes to complaints? When you were looking into this case, for example, the Clint Eastwood’s case, did you see anything in particular that kind of stood out to you? Any claims that were in particularly surprising?

Julia Métraux:

Yeah, so when it came to the Clint Eastwood’s case, that’s a great thing about having great sources. Doron Dorfman brought that case to my attention. I did not know about it previously. And in the wording of what Eastwood said after he had defeated the case was somewhat along the line that I’m standing up for the little guy and all these things. It’s like, “Wait, you have so much money and you’re not exactly a little guy here.” I think that it’s important to knowledge that some people could just be doing a lot better and maybe don’t care. I also think when it comes to the specific Supreme Court case, that there might be some small businesses that might not genuinely be up to par when it comes to everything you need to do for ADA accessibility, for example, that includes, which this Supreme Court case involves, is having to have accessibility information on your website.

Just going back a bit to the case, there was something cited in the case where one of the hotels said, “Sorry, we don’t do ADA accessibility here,” or something along those lines, which is a complete joke. It’s a 30 plus year old civil rights law. You can’t just say you don’t do it, but there might be some companies that might not know that you need to put ADA accessibility information on the site and not just as it pertains to let’s just say, make an accessible for screen readers, maybe using a background of a site and texts that have good contrast. So I think there needs to be more work, and I think a lot of advocates say the same both in the disability community and the small business community of awareness of what needs to be done and what should be done because really that benefits everyone.

And we’ve been talking about filing lawsuits and following them through takes time. This what a Title II case I believe. But another one is I am a recent graduate of UC Berkeley Graduate School, and last fall there was a years long investigation and I believe the state or the county, someone in the DOJ had gone after UC Berkeley for not using either captions or having a transcript available on online material. That took years. If a student themselves had gone after the school for that, they would maybe be chasing that long after they graduated. And that’s just an example of how frustratingly long it could be. But yeah, hope that answers the question well.

Stephanie Flynt:

Yeah, absolutely. And again, thank you so much. I like that you brought up the fact that they’re definitely still businesses, including hotels that for one reason or another, I guess sometimes it’s their staff that are trained who are like, “oh, well we don’t have to comply with this.” And I’m like, “Yeah, you actually do.” And then there may be some, which I’ve discussed with another person who’s going to be featured a little bit later in this episode. I won’t spoil it too much, but there was a particular hotel that was not accessible, not physically accessible, and there was no way that it was going to be physically accessible. And this is stuff that’s happened in recent years and you’re just like, “These people need to get with the program.” But all that to say, of course, I don’t want to take up the entire podcast. So Raquel, I know you had a few other questions.

Raquel Rosa:

I sure did. So switching gears, Julia, I was hoping you can speak with us about your thoughts on how the media could do a better job of covering issues that affect people with disabilities.

Julia Métraux:

One of the first things I’m going to say is hire disabled reporters and also talk to disabled people, not just non-disabled people around them. I came to covering this because of my connection to the disability community and also being an openly disabled reporter. I think that just looking at the world around us and talking to people is super helpful. I also, I’m not going to call it X, but disability Twitter is still there, still talking about many inaccessibility issues and inequities, and I think that something that it’s important to keep in mind and could also perhaps maybe be a bit frustrating in the 24/7 news cycle is that sometimes disabled sources need more time to schedule an interview and all that thing and I get that. I’m a chronically ill reporter. I definitely feel like I’m running on a hamster wheel, and that’s part of the own pressure I put on myself not really pressure anyone puts on me, but yeah, working in [inaudible] time doesn’t always align with the media and I think that planning ahead and all that is super helpful and also giving time.

And unfortunately we see, I say unfortunately, but sometimes they could be fortunately too, a lot of these cases and all that are playing out in courts right now. I think it’s very interesting. I say this also someone who is high risk for COVID-19 complications, ADA cases that pertain to COVID safe working conditions. We are just seeing how it’s starting to play out, including safety and hospitals.

Raquel Rosa:

Thank you. I think it needs to be said again that the best way or one of the best ways that the media could enhance their coverage of disability specific issues is to actually engage with the disability community. I certainly, there’re countless articles I’ve read where the folks being interviewed are indeed the folks around people with disabilities. So I think we need to be a lot more intentional about telling people stories with their voices. I think you completely hit the nail on the head there. So this kind of segues into my next question. You identify of course as a journalist with a disability, so I was wondering if you could share a little bit more about your personal experiences in this professional space?

Julia Métraux:

Yeah, so, a little bit nerdy, I started doing journalism in high school. I was born with a mild to moderate hearing loss, but that didn’t really shape my career when it was starting. I had to leave undergrad, I was very sick, was an undiagnosed autoimmune disorder, and that brought me into health reporting and by adjacent disability reporting, not that other people weren’t doing disability reporting. There definitely were and continue to be amazing fellow disability reporters, but it’s really a growing beat. And so when I was both as a freelancer before and during grad school, I was like, okay, I want to pursue this as a beat. And that is one of the things that I’m hoping to be able to continue to do at Mother Jones.

Raquel Rosa:

Julia, can you share with us where we can follow your work?

Julia Métraux:

Yes, I am on Twitter until the very end. I am also recently joined Blue Sky and I’m also on Instagram. I also have a somewhat unusual last name, so if you Google me, there’s only two Julia Métrauxs in the world and the other one has no digital footprint. So it’s pretty easy to find me.

Raquel Rosa:

Well, thank you, Julia. On behalf of the entire podcast team, on behalf of the PandA network and NDRN, thank you for sharing your insight and experience with us. This has been just very enlightening and revitalizing, I think to just consider the breadth of issues that are before us. So thank you so, so much for joining us today.

Julia Métraux:

Thank you so much for having me. Like I said, disability reporting, it’s definitely a growing beat and many of us are definitely trudging along and I really hope to see more disability reporting as the years go along.

Stephanie Flynt:

Alrighty, so we actually have a super special treat this month for our spotlight story here on the PandA Pod. We have Amy Scherer, who is one of our colleagues here at NDRN. She is the senior staff attorney who works on vocational rehabilitation, and I’ll let her introduce herself to the people real quick before we get into all things wheelchair access and hotels.

Amy Scherer:

Hello. I’m very happy to be here. Thank you, Stephanie for having me, and I’m really excited to be able to talk about such an important issue as hotel accessibility. I’m very interested in it professionally, but also personally as a wheelchair user, so I look forward to talking with everyone.

Stephanie Flynt:

Yeah, absolutely. So just to kick us off a little bit, I know that a lot of people don’t always think about accessibility when it comes to hotel rooms and the various types of accessibility that there are rooms that are specifically designed for folks who are deaf who stay in them. They’re of course the wheelchair accessible rooms, but I know that there are definitely times when you may be given a totally different accessible room that doesn’t meet your accessibility needs or even just a non-accessible room entirely. So I would love for you to share a story with our listeners about a time when that has happened to you. I’m assuming you’ve got some stories.

Amy Scherer:

I definitely do. I probably have a bunch that I could pick from, but I will start with this one primarily because it was fairly recently and it did really put a crimp in the plans that I had. So we were staying in a hotel in this area in the Washington DC, Virginia, Maryland area, and we had specifically requested a wheelchair accessible room, confirmed reservation, and had requested a roll-in shower instead of a tub, which works better for me. And when we got to the hotel, they actually did not have an ADA wheelchair accessible room. They did not have a room that had grab bars, which again is another usually standard part of an ADA wheelchair accessible room. And they did not have a roll-in shower either, so it wasn’t even that someone else was in the room that didn’t need it.

They literally did not have a room that met the specifications that we had requested even though, like I said, we had a confirmed reservation. So that was a big issue. And I guess on the good side, there was a solution, but it was not an easy solution. The hotel had another chain located about 10 to 15 miles away from where we currently were, and they offered us the opportunity to take an accessible room in that location instead of where we were. And it did work out, but it really was a major inconvenience because we had to get back in the car and drive 10 or 15 miles in traffic to go to the other location, get out of the car again, unpack everything and repeat the process. So the second room did work and it did meet the needs of what we were looking for, but it was really a pain that we had to go to an entirely different location than the hotel that we had initially chosen.

Stephanie Flynt:

Wow, that’s definitely a unique experience. I’ve definitely heard a lot about folks. Of course, very important, the hotels having these accessible rooms and then folks requesting them and then people not getting them. But I don’t think that until today that I’ve heard of a hotel, at least in this day and age because I know that we had talked a little bit before and it sounds like this story was relatively recent, a hotel that just didn’t have an accessible room at all. That’s bananas.

Amy Scherer:

It was very surprising, like you said, especially for me because it was within the last three years. So it’s not something that I really even think about so much in 2023 that something like that could happen. I think in general, I would say my experience has improved dramatically from the last 10 to 15 years to now in terms of hotels being more tuned into that type of thing and more something like that would not be that likely to happen, but it did.

Jack Rosen:

So when we were getting ready to do this interview, you mentioned to us that it’s not just not having an accessible room, but sometimes the rooms designated as accessible, actually aren’t because of some of the design choices they’ve made.

Amy Scherer:

Sure. I’ll be glad to talk about that. And I think it’s important to say, first of all before I explain some of the issues that I understand that when they’re making a wheelchair accessible room, they’re trying to make it work for as many people as possible who use wheelchairs. And of course we all come in different shapes and sizes, so that can be challenging. But even with that in mind, sometimes they really do fail in creating something that’s going to work for someone who is a wheelchair user or non-ambulatory. So the three examples that I run into quite a bit are first of all, the height of hotel beds. I guess it’s important to note that I am about four feet, nine inches tall, so I’m definitely on the shorter end of things, which makes it a little bit more complicated. But I have been a little bit dismayed by the trend in the last eight to 10 years at almost all hotel chains to have higher beds.

I’m not sure why that became more attractive or more aesthetically pleasing, but there was definitely an overall shift to having really high hotel beds on platforms and being a shorter person and then a person who’s trying to transfer from a seated position onto a higher bed it can be very, very difficult to the point where with the way that a lot of hotel rooms are right now with the bed situation, I’m not able to travel independently because I honestly cannot do the transfer from a little wheelchair to a high bed on my own. So that has been a big issue and I have seen in recent years on the plus side, or very recently, I would say even just within the last year, having a bit more of a choice if you ask that there might be a lower bed option and a higher bed option, both within the wheelchair accessible room blocks.

So I do suggest if that’s an issue for anyone else listening to this, maybe ask about that and you might get a little bit lucky and there may be a lower bed available for you.

The other issue, kind of again related to height is the height of the sink. Again, it’s very important obviously if you’re a wheelchair user that the wheelchair fit underneath the sink so that your knees are not hitting the sink when you’re trying to go underneath it and you can get nice and close to the sink, but they have gone pretty far and making the sinks really high, maybe overcompensating for the fact that they want to make sure that the wheelchair can fit underneath the sink and that can create issues for those of us who are shorter, not being able to actually reach the sink itself, or even if I can reach the sink, I usually cannot reach the faucet to turn the water on and off, which obviously again negates the ability to be able to use the sink independently.

So it is one of the situations where I think, again, they’re building the sink and maybe they’re meeting the letter of the law or within the letter of the law, but they are not thinking about it from a practical standpoint. And perhaps did not have somebody in a wheelchair actually try to use this before they finished building it.

Another example of that would be the shower. I typically tend to use a roll-in shower instead of a shower with a tub to make the transfer easier again, because there’s usually a bench attached to the wall of roll-in shower, which is great, and those transfers are usually not that hard to do. This is not a situation where there’s a height issue, but you can only sit on the bench that’s attached to the wall. You cannot move it around because it’s literally attached to the wall.

And so the problem there is sometimes where the bench is on one wall and then the shower head where the water would be coming out is on the complete opposite wall. So there’s absolutely no way if you’re sitting on the bench that you could reach the shower head. And in some cases it’s so far away that even if you went to turn the water on first and then transferred to the bench after you turn on the water, the spray of the water will not reach far enough to actually get you wet if you are sitting on the shower bench. And that is very frustrating. It’s amazing how many times that happens even in current day. And again, I think that’s a situation where they’re not thinking about the fact that the person who’s sitting on the shower bench attached to the wall might not be able to move or stand up or get to the other end of the shower to turn it on. So that’s again, where the practical impact is not really being factored in when they create the design for the shower.

Stephanie Flynt:

Yeah, absolutely. And I’m so glad that you pointed out the fact that people do come in different shapes and different sizes. The truth of the matter is, while it sounds like these folks, or at least I like to believe that people who are designing these have very good intentions and want to make these things accessible. But if you’re not consulting directly with disabled people, and I know I’m preaching to the choir when I say this for all six of our listeners to the podcast, but it’s so important that you consult with disabled people because the truth of the matter is that things like these we’re not all the same. We’re not all going to be five foot six and use a wheelchair. And so when it comes to those types of modification, we need to make sure that the accessibility is kept in mind from the onset as opposed to an afterthought or even just not exist entirely.

Amy Scherer:

I couldn’t agree more. I think you said that perfectly and that really is an important part of the process. And it would be great too if going forward, I guess specialists, if I’m focused on the employment aspect of things, I would love to see wheelchair users and other people with disabilities actually enter the architectural field more often or the interior design field so that you would have that perspective built in to the people who are actually designing the hotel room.

Stephanie Flynt:

Absolutely. Well, Amy, it has been an absolute pleasure having you on the PandA Pod. Thank you so, so much for sharing your story and sharing your insight. I know that I found it super valuable and I know that our listeners also have found this super valuable as well. So thank you again for being willing to chat with us today for a few minutes.

Amy Scherer:

Thank you so much. I’m so glad to do it, and I think a lot of it, like you said, is that people have good intentions, and a lot of it is just not necessarily being aware of the issues. So I love to participate in anything that is going to help to raise awareness because I think that’s the key to changes being made. So hopefully that will continue to happen.

Raquel Rosa:

And finally, joining us, we have Michelle Uzeta. She is the Deputy Legal Director at the Disability Rights Education and Defense Fund, also known as DREDF. She has specialized in civil rights law since 1993 with a particular emphasis on disability rights and fair housing litigation. Michelle has years of experience working in private practice and has previously served as the legal director of the Disability Rights Legal Center, the litigation director at the Southern California Housing Rights Center, and an associate managing attorney at Disability Rights California. Michelle’s practice has focused on the litigation of high impact lawsuits and representation of individuals facing discrimination under the Americans with Disabilities Act, Section 504, Fair Housing Amendments Act, and related state laws.

In addition to her role as litigator, Michelle has lectured and written extensively on the legal rights of people with disabilities and has authored a number of amicus briefs on disability rights issues. Michelle is a graduate of Stanford University and has earned her JD from King Hall School of Law at the University of California Davis. And shout out to Disability Rights California and Disability Rights Hawaii as Michelle worked there too. And to kick off our questions, I’m going to kick it over to our other Michelle, Michelle Bishop.

Michelle Bishop:

Great minds we find are often named Michelle, so it’s not a surprise. Michelle, thanks so much for joining us today. I was wondering if you could kick us off by telling us about Title III of the ADA and what mechanisms we have for enforcement of its provisions.

Michelle Uzeta:

Sure. And thank you for having me. It’s a pleasure to be here. So the ADA, the Americans with Disabilities Act is a comprehensive federal law that prohibits discrimination based on disability, and the way that the law is set up it has what they call titles, which are like chapters in the book. And Title III is the chapter that prohibits discrimination by private businesses, otherwise called sometimes places of public accommodation. So that’s the title that we’re really focusing on at the current time because that enforcement of people’s rights under Title III are under attack. The ADA is enforced in two primary ways.

The first is through the government, and here I’m talking about both the federal and local governments that enforce state laws that are similar to the ADA and then through private individuals who have experienced discrimination. The ADA is a remedial law. It was enacted to remedy a history of discrimination, and as such, it was specifically written to include a private right of action, which means that people with disabilities whose rights are violated can seek relief in court. And Congress made private enforcement the primary method of obtaining compliance with the ADA, simply because there’s so many businesses that are in the United States, it would be impossible for the Department of Justice or federal government to enforce the law as to all of those businesses.

Michelle Bishop:

So the ADA is over 30 years old at this point. How is it going?

Michelle Uzeta:

How’s enforcement going?

Michelle Bishop:

Absolutely. Is it working?

Michelle Uzeta:

It’s hard to say. I’ve been practicing disability law for 30 years. So I came onto the scene right around the time that the ADA has, and I haven’t really seen violations slow down, which is unfortunate. I’d say that enforcement is ongoing and consistent. It has to be because discrimination doesn’t rest. Enforcement also really depends on the administration in office and their priorities, whether disability rights or civil rights generally are within their priorities and what the resources are both financial resources that are being put into enforcement efforts and staffing.

I’ll note that there was a progress report done by the National Council on Disability published in 2019 that revealed consistently declining budget levels and a 24% drop in staffing for the Civil Rights Division, which is the division that focuses on disability rights between 2010 and 2018. There’s no more recent data, but those kind of cuts or drops in resources and staffing are concerning because enforcement can’t happen when your resources are declining and there’s no staff dedicated to doing enforcement. So in that context, it’s even more important that people with disabilities in the community be permitted to enforce their rights and not have their right to bring actions based on the ADA infringed or restricted in any way.

Raquel Rosa:

So Michelle, pivoting over to hoteling while disabled. I was wondering if you could tell us some stories you’ve heard and examples you could share about this experience.

Michelle Uzeta:

Well, it really runs the gamut so you have people who are trying to use online reservation systems because most of the hotels use online reservation systems at this point, and they can’t find any information about whether there are accessible rooms or accessible facilities, accessible parking, passive travel. And this is all information that the ADA requires hotels to include on their online reservation system so people with disabilities can make reservations at the same times and with the same ease as people who do not have disabilities. So that’s one kind of frustration that people experience.

A related frustration is you don’t see the information about accessibility online. So you pick up the phone and you call, and the person on the other side of the line has no idea what you’re talking about. Oftentimes, you’re routed to a main reservation system that isn’t onsite at the particular hotel you’re trying to get information on. And so they don’t know they aren’t onsite. They have no idea about the accessibility of the facilities. They can’t give you the information.

Sometimes you call and you are given wrong information. You’re told, “Oh yeah, we have accessible rooms. Oh yeah, the room you’re reserving is going to be accessible.” And then it turns out not to be. And even when you make a reservation online and you’re told that you have a accessible room guaranteed, and then you arrive on site after a long day of travel and you find out that the room that you reserved is not actually accessible. And this experience just happened to me recently. I have a family member with mobility impairments who required a walk-in shower and an accessible restroom with grab bars, et cetera, reserved an accessible room online, confirmed the accessible room day before travel. When we arrived, we found out that the bathroom had a tub that was unusable by my family member.

There were no grab bars and everything that had to be operated in the restroom required you to pinch and turn things, which my family member could not do due to their disabilities. This was the accessible room, even after I pointed out that lack of accessible features I was told, “But that’s the accessible room.”

So it is really difficult for people with disabilities when they travel. It’s really a crapshoot. You never know if you’re going to actually get an accessible facility. And that’s an added layer of stress on travel. Travels always stressful for people even when they go on vacations and things. The idea of traveling and not knowing where you’re staying, if it’s going to work for you, whether you’ll be able to shower, that’s just something that people shouldn’t have to deal with.

Michelle Bishop:

Michelle, can you tell us what’s at stake? Why are we collecting these stories right now?

Michelle Uzeta:

So we’re collecting these stories right now. It’s been a long, long, long hard fight against the business community to get them on board with not villainizing ADA plaintiffs and the disability community, and to really refocus their efforts on educating their business members and letting them know about tax credits and other ways of making their businesses accessible, encouraging voluntary compliance with the law. So we’re collecting these stories to counter in large part the business community’s narratives that they’re throwing out. And it’s at this particular time because there’s a case that I’m assuming we’re going to talk about that’s going to be argued before the Supreme Court in a couple of months. So the business community has been really vigilant about villainizing people with disabilities and their attorneys and trying to take down the ADA, talking about how it needs reform and how it’s so unfair to businesses who want to comply but don’t know how.

So we want to, I guess, humanize the issues to let people know these are not minor inconveniences when you don’t comply with ADA standards, the ADA standards are the bare minimum that the government decided provides accessibility. And oftentimes, it’s not enough to provide accessibility, but it is the bare minimum. And these standards have been around for 33 years. There’s really, really no reason that people should not be complying with the law at this time. And people just wait. They wait to get sued, and then they complain about being sued. They just don’t want to make their businesses accessible. And we do want people to tell the stories. We do want people to explain how they’re deterred from going out into the community. They’re deterred from going out to dinner with their family. They’re deterred from going on vacation because everything’s inaccessible to them. And these are folks that the business community should want to have as customers. They have money to spend, but they don’t. They just don’t see it so there’s this large disconnect again with, as I said before, people not getting how access impacts our community. So we’re trying to get the stories out to give a real flavor and a face to these issues that we’re complaining about. It’s not just measuring inches and slopes. You’re really impacting somebody’s life when you don’t make your business successful.

Michelle Bishop:

And there is a Supreme Court case around this. Can you tell us a little bit about it?

Michelle Uzeta:

Right. So in October, the Supreme Court is going to be hearing a case that deals with ADA enforcement, and it’s called Acheson, which is the name of a hotel here versus Deborah Laufer. Deborah Laufer’s a person with physical disabilities. She uses a wheelchair and she has filed hundreds of cases against hotels nationwide for failing to comply with the ADA’s requirement that hotels include certain accessibility information on their websites as part of their reservation system. So Ms. Laufer is what you would call a tester in these types of cases in that she doesn’t have an immediate intent to visit the hotels she’s suing, but rather she puts herself voluntarily in a situation to experience discrimination by visiting the hotel’s websites to check for compliance with the requirement that they include accessibility information in their reservation system. And when the hotels don’t have that information, she sues them so they change their policies and they put the information there for the next person who visits the website to try to make a reservation and go on vacation and visit the hotel.

Tester standing has been recognized and acknowledged in ADA cases for some times and in the context of fair housing and other civil rights cases for a very long time. But the courts at this point in time are split on whether ADA testing should be recognized in ADA cases… Oh sorry, whether testing should be recognized in ADA cases, and in particular, under circumstances like Ms. Laufer’s where she doesn’t have an immediate intent to visit the hotels whose reservation systems she’s visiting. So we’re arguing in that case DREDF and other disability organizations are filing an amicus brief in the case. And actually our brief is going to be filed tomorrow. And our brief is just providing a history of testing, putting forth information about why testing is important in ADA enforcement, and how private enforcement is really necessary to achieve the ADA’s goals of access to the community.

And we also are addressing the issue that someone like Ms. Laufer who’s a tester, who puts themselves in a position to experience discrimination, does actually experience discrimination, and that discrimination causes dignitary harm. And that type of harm is something that gives her what they call standing or the ability, legal ability to file a lawsuit. Because when Ms. Laufer visits these websites and sees that the information’s not there, it sends a message to her and to other people with disabilities who visit the website, which is, you don’t belong here, you’re not welcome at our hotel, we don’t think that you’re a customer that we need to encourage to come to our hotel. You just aren’t wanted here. And that does cause dignitary harm.

There’s been a lot of studies about how the marketplace and how different things signal to people, whether or not they are welcome and belong in the marketplace. And those aren’t just physical things like stairs or something like that that would preclude somebody from entering, but also policies that tend to exclude people and not putting information that’s required on your website is a policy that tells people with disabilities, we don’t want you here, we don’t care about you as a customer.

Michelle Bishop:

So Michelle, can you tell us why should our listeners care? What’s really at stake here?

Michelle Uzeta:

I would say that ADA enforcement is at stake. So the future of accessibility is at stake. I mean, if you consider the fact that businesses are still highly inaccessible, I would challenge anybody to just walk a couple of blocks or roll a couple of blocks and count the number of barriers that you encounter. Inaccessibility is still widespread. We need people to challenge that inaccessibility. So if the courts are further narrowing, who has the ability to enforce the law, we’re just not going to have enforcement. And as we talked about a little bit earlier, government is ill-equipped to handle the sheer volume of inaccessibility that is out there, and businesses are not voluntarily complying with the law.

Testers are really, really important too. I really want to stress that there’s this narrative out there that people with disabilities are very willing and eager to file lawsuits, and this is a false narrative.

Litigation is difficult to bring. Cases are really, really stressful for people, and they’re expensive. There’s filing fees, there’s service fees, there’s deposition costs, there’s a lot of costs that go into filing suit and Title III of the ADA does not have a damages remedy. So you’re not coming out of a lawsuit with money in your pocket. That just is not happening. There’s no guarantee that you’ll recover your attorney’s fees. The Supreme Court has already ruled in another case that if a defendant moots out the case, meaning they remove the barrier right at the beginning of the case, they can move to have the case dismissed on the basis that there’s no longer a dispute, and in that case, you don’t get your fees. So you may go through the process of informally trying to get somebody to remove barriers. They don’t do it. You file suit, you pay these costs to file your suit, and then they remove the barriers and take away your ability to recover your attorney’s fees, and then you’re actually out of pocket money.

So no one is beating down doors to be able to file enforcement actions. It’s not something that the average person with disabilities wants to do. And in addition to that, ADA plaintiffs and their counsel are often villainized and their motives are questioned, their characters are questioned. That takes a toll on your mental health. Businesses have become really, really indignant about being sued even when they acknowledge that they have violated the law. They refer to cases as being meritless, as being frivolous, and when you really look at these cases, there are actual violations there. The cases are not meritless, they’re not frivolous. Businesses are just really, really pissed off that people with disabilities are taking them to task for their ongoing failure to comply with the law.

So yeah, that’s what at risk. We have these few people, these serial litigants, who are willing to take on the burden of ADA enforcement. And that’s not to say that every serial litigant is a good guy. I mean, there are people out there who engage in what they would call bad faith litigation tactics or doing things that are not quite above board. But the majority of people who file numerous lawsuits are people who are actually trying to make a difference. They view themselves as advocates. They are advocates, and if they’re doing things the right way, there’s no reason why their serial litigation should be frowned upon. They’re taking on the burden of enforcing the law for those of us who don’t have the means to do so, and they serve an important role in the community to make the community more accessible for everybody.

Raquel Rosa:

Thank you for spending time with us today. Thank you for fighting the good fight. I think I speak for all of us when I say how much we appreciate you for being with us and being in solidarity with us. Thank you, thank you, thank you.

Michelle Uzeta:

Thank you. Appreciate it.

Michelle Bishop:

Well, thank you to all of our guests. That was a really fascinating and informative episode of the podcast. And now for everyone’s least favorite time of the month, Stephanie, tell us a joke.

Stephanie Flynt:

Don’t you mean most favorite time of the month?

Michelle Bishop:

That’s absolutely what I meant to say. Sorry. Verbal typo.

Stephanie Flynt:

Yeah, can you make sure to edit her whole thing out?

Okay. So for my joke this week, it’s more of a story joke, but I’m not sure what category you guys want to utilize. So pick a category between fast food and a department stores.

Michelle Bishop:

I’m terrified, Raquel. Make the decision.

Raquel Rosa:

I’m saying fast food.

Stephanie Flynt:

All righty. Okay, so this old couple, they go into this restaurant and they get a small burger and french fries, and they go sit down at their usual table so that they can eat that. Now the guy, the man ends up, this is a heterosexual couple, sorry, I should have specified, but the man sits down and eats some of the burger and the french fries, and there’s this person who comes up to them and they offer to buy them a separate meal. And the lady who was not eating the burger and fries declined. And this person who of course is trying to do this good deed and trying to make sure that both of them are fed, keeps going, “Well, why? What do you mean? Why don’t you? I’m happy to buy you a separate meal. It’s really okay. This is a very small meal that you guys are sharing.” And the lady says, “Oh, well, the reason is because I’m waiting on the teeth.”

Anyone get it?

Raquel Rosa:

Waiting on the teeth?

Michelle Bishop:

What is happening?

What?

Stephanie Flynt:

They’re sharing dentures.

Raquel Rosa:

Oh, no.

Michelle Bishop:

Stephanie.

Raquel Rosa:

Oh, no.

Michelle Bishop:

First of all, these jokes get longer and longer. It’s just turning into weird story time.

Raquel Rosa:

Oh my gosh.

Stephanie Flynt:

Sorry guys. Anyway, that’s my joke for the week, and I’ll work on making them shorter next time per Michelle’s request.

Michelle Bishop:

Complaints about the disorganized nature of this podcast and terrible joke telling as always, can be sent to podcast@ndrn.org. Jack, tell the people how they can follow us on social media.

Jack Rosen:

You can follow us at NDRN Advocates on Twitter, Facebook, Instagram. You can also follow us at National Disability Rights Network on LinkedIn. Until next time, folks.

Michelle, Stephanie and Raquel sit down with NDRN’s own Claire Stanley to discuss autonomous vehicles. Then we share a spotlight story recorded in the field, when Jack, Raquel and our colleague Marcia Baldwin took a Waymo in Phoenix, Arizona. Listen all the way through for a surprise guest appearance!

Full transcript of this month’s episode available at https://www.ndrn.org/resource/panda-pod-july-23/

Michelle Bishop:

Hello, welcome to podcast everyone. Welcome back. So I’m really tired today, so somebody else is going to have to be the hype man for this episode. This podcast has worn me out. This is Michelle Bishop and I am the voter access and engagement manager at NDRN and one third of your podcast hosting team.

Stephanie Flynt:

And I’m Stephanie Flynt, public policy analyst, and I am going to try to be the podcast hype lady, but I’ve only had half a cup of coffee today, so.

Michelle Bishop:

Oh, no. Raquel, please have energy.

Raquel Rosa:

Hey, this is Raquel. I have had lots of coffee. I am also full-time on the external relations team. I am your community relations specialist full-time, live and in color, and I am the three of three in your podcast family today.

Michelle Bishop:

Yay. Congrats on your move to communications. Raquel. Woo.

Stephanie Flynt:

Yes.

Michelle Bishop:

Jack, insert the applause sound here. Oh, and we as usual, forgot to introduce our producer, Jack Rosen. Hey Jack, thanks for everything.

Jack Rosen:

Our guest today is NDRN’s very own public policy analyst, Claire Stanley. Claire began working at NDRN in December of 2020. Prior to her position here, she worked as an advocate with the American Council of the Blind, where she advocated for the rights of blind and visually impaired persons. Claire has previously worked at two P&As, at Disability Rights California as a summer legal extern, and with Disability Rights DC at University Legal Services as a legal fellow under the PAMI program. Claire received her BA in Political Science and Communication from the University of California Davis and a JD from the University of California Irvine.

Stephanie Flynt:

What am I missing here?

Michelle Bishop:

Stephanie, I don’t actually know what that is either, so you’re in good company this time.

Stephanie Flynt:

Okay. That makes me feel better. Okay. Sorry for holding the world up.

Danielle:

Hi, this is Danielle and I was a tour guide at UC Irvine. So quick history on the anteater. Long story short, UC Irvine was a university that started in the ’60s and as part of their funky hippie rebellion, they had a school vote where the students, despite what the administration wanted they all decided to write in that they would become anteaters. They won the next sporting event, and so the school officially became anteaters. And so now the UC Irvine chant is, “Rip them eaters, ZOT! ZOT! ZOT!”

Jack Rosen:

All right. And now back to our show. Claire, recently, Raquel and I had the chance to try out a Waymo when we were at our annual conference in Phoenix. It was a pretty weird experience being in a self-driving car. Took a little bit to get used to, but we keep hearing these companies talk about themselves as a solution to some of the transportation barriers facing people with disabilities. On the other hand, we also noticed that the Waymo we were in might not be accessible to a lot of people with disabilities. So I was wondering if you can talk about the potential that these autonomous vehicles have and maybe some of the challenges.

Claire Stanley:

Yeah, thanks Jack, and thank you for having me here today. There is a lot of excitement in the disability community on the potential benefits that can come from autonomous vehicles or AVs, you might hear me say for short. But of course, it’s like anything, if you don’t design it with accessibility in mind, going back and retrofitting it is not going to work so well, and then it’s going to leave our whole community behind. So I’ve heard a lot of us in this field compare it to retrofitting a building. If you don’t install elevators and ramps from the beginning, it’s going to be really hard to fix it. So the same thing goes with autonomous vehicles. So there’s a lot of great potential for those of us who are blind or have low vision. Driving a traditional car is, for the most part, impossible with exception of a few people who have some assistive technology.

But all that to say, it would open up that door, but not just for the blind and low vision. I’ve heard talk for people with cognitive or intellectual and developmental disabilities, for the older community, which would be wonderful, so they can get to places like doctor’s appointments, especially for people who live in rural areas where public transportation and subsequently paratransit just don’t even exist. Persons who use wheelchair, other mobility devices. So there’s a lot of potential, which is exciting, because when you talk to people in the disability advocacy space, you’ll often hear that one of the biggest barriers to just engaging in the community is lack of transportation, public transportation, things like that. And so if we have access to these autonomous vehicles, we can truly independently get around without having to be reliant on other resources that are often unreliable, expensive, things like that.

But like you said, there’s definitely some potential pitfalls or negative consequences that could come about. We have talked, and when I say we, that’s the general disability community. We’ve talked to a lot of the major car companies, the OEMs that are developing these, and a lot of them have said that they’ll make them accessible for people with disabilities, but they can say so much, but when the rubber hits the road, will it actually happen. So I’ll just give a couple of examples and then feel free to ask questions and I can expand. But we need things like physical access. So if you’re a wheelchair user or using another mobility device, you obviously need the ability to enter the car safely. If you’re blind or have another sensory disability like deafness, or are hard of hearing, you might need what we call human machine interface, HMI.

So that’s things like text-to-speech or large print, things like that. Again, if you have a intellectual or developmental disability, we want the interaction to be straightforward and not too complicated, all kinds of things like that. Even thinking about the elderly community and making it simple for them. A lot of us suspect that a lot of these will initially be used through your smartphone. What about people who don’t have a smartphone, don’t want to use a smartphone, can’t use a smartphone. So again, the opportunities are amazing, but the barriers are definitely there if we don’t think about it.

Raquel Rosa:

So Claire, could you give us a couple of recommendations about how we could ask these companies such as Waymo to improve their accessibility in their vehicles?

Claire Stanley:

That’s a great question. So I guess that’s a hard to answer, because a lot of, again, the disability community have already been asking them. We’ve had some really great conversations. But again, our fear is that you can talk and talk all day long, and then when the rubber hits the road, no pun intended, car jokes, will they actually carry it out. So I guess the question is can we develop these relationships and really keep them going? Which of course, the optimist in us all wants to believe that’s true, and NDRN and other disability advocacy organizations are really staying on top of those relationships. But of course, at the end of the day, it’s an industry. It’s a company that wants to make money, and so will they carry it out. So I guess they have two thoughts there. One, of course, we should continue to be whispering in their ear or maybe yelling in their ear so that they don’t forget us.

But then there’s also perhaps a policy side to it. Do we need to, on the policy side, mandate that it happens or will it not happen? So it’s hard that, again, the optimists in me want to say, if we continue these relationships that already exist, things will get done. But then the policy side of me says, do we need to implement law that’ll require it so that we know that it’ll happen? So I wish I could say there was an easy answer and NDRN and several other organizations were fortunate to go to the autonomous vehicle, oh, I’m going to get the wrong name wrong, but it’s basically a caucus that has formed in Congress. And we were invited to one of their meetings about a month ago, and we went and we got to meet some of the industry partners, which was exciting, because we got to actually physically look at some of the cars, which was really fun. And we were able to talk to some of the Congress members there who are leading the cause and leading some of the legislation.

So again, I think it’s a mix of interacting with the companies, interacting with the Congress members who are helping to push this along, push it down the road. Let’s see how many car jokes I can make. But yeah, it’s not a clear cut answer, but just continuing to make sure that our voice is heard in every segment of the process as it rolls down the road.

Raquel Rosa:

Thanks, Claire. I think you bring up a really good point about how these companies are truly, they’re trying to meet needs, but at the end of the day, they’re trying to make money off of it. And I think our collective approach also includes how we talk about an economic benefit for everybody when everybody has access, that’s good for all of us. So I really appreciate you giving us those tips and ideas.

Claire Stanley:

I think that’s a really good point, because we say that in the transportation space, in the advocacy world, in all forms of transportation, whether it be autonomous vehicles or public transit, et cetera, we always make the argument that if people in our situation, people with disabilities, have a access to transportation, we can do more, i.e go to work, go to businesses and spend our money. You got to get out and about to be part of the community. And so I think that’s a great point that if we have access to that, we can be another customer in the industry and we can be other employed individuals. And so involvement makes everything contribute to the community as well.

Stephanie Flynt:

Yeah, absolutely. And I love that you pointed out the access to transportation. I know that there are some folks who of course have some weariness around the autonomous vehicle space. I’ve definitely heard folks back home go, “Why can’t you just keep using Uber and Lyft?” And I will not get on my soapbox like I did my first episode of the podcast. If you want to go back and hear my Uber and Lyft denial stories, feel free to do that, or feel free to go find me on TikTok. But all that to say, being denied rides because you have a disability or even not being able to access rideshares and that sort of thing. Having this whole new world of autonomous vehicles that opens that door knowing that when you’re requesting a ride, that the autonomous vehicles not going to deny you based on a disability or service animal. So I know that we both share those commonalities and those experiences as well.

Claire Stanley:

Yeah, that’s a really good point. And in fact, I like that you emphasized comparing it to rideshare companies, because a lot of the major industry competitors we’ve spoken to like, Waymo, can’t talk, who created these, have told us that at least the first iteration, which who knows how many years that’ll last, will not be privately owned cars or vehicles like most of us grew up with, they will be more of a rideshare model. So unless you’re the wealthiest of the wealthy, you’re probably not going to have an AV sitting in your driveway or a garage, most of it’s going to be a rideshare situation. So you’re exactly right. Those of us in the general population who are using it, which hopefully will be everybody based on accessibility and affordability, which is a totally other topic we could go down, but based on that, it’ll be a rideshare model and then anybody can use it.

And like you said, exactly, a car hopefully cannot discriminate. A car’s not going to talk and say, “I don’t want your service dog, you can’t get in.” And one other thing I wanted to say, as far as accessibility, I had talked about the fact that access is important for both physical access and HMI or human machine interface. One other thing that has been discussed as far as accessibility is just being able to find the vehicle itself. For persons who are blind or have low vision, the app on our phone may say it’s a red Mustang convertible, that would be awesome, but we’re not able, for the most part to see the red Mustang convertible. So there’s been talk about things like haptics, that’ll vibrate to tell you when you’re getting closer, a beeping sound coming from the car. So getting creative with those. This would be the same for persons with perhaps intellectual or developmental disabilities, making it very straightforward on finding your car.

We’ve heard discussions from some car industries that they are not making it as easy to have the car pull up right on the corner where the curb cut is. So a wheelchair user or other mobility devices could easily use the curb cut and get in the car. We’ve heard directly from those companies that some prefer to pull up more and mid-road, that’s not going to work for people who use mobility devices. So really advocating for the cars to know to pull up at the safest spot, close to a curb cut, things like that. So it’s not just using the car itself, but it’s even finding the car and being able to get into it from the beginning. So that’s another area of advocacy that’s going on in this space.

Raquel Rosa:

I think we are on the same wavelength. Claire, I was going to ask you what your wishlist might include, and it sounds like you’ve identified some of those items. And to your point about having the car pull up in a seamless way for entry, I remember, and I don’t know Jack if you took photos or videos of this, I know I didn’t, but when our car approached, it was almost like the older brother in The Wonder Years who was like, press the accelerator and then stop and then press the accelerator and stop. So he’s joking with his brother like, “Get in the car,” and then, “Sike,” and that kind of thing. And that’s what it felt like at first, and we could not figure out how we’re supposed to get the vehicle to stop and get us inside. So that part was a bit of a hiccup, and I would imagine that for anybody requiring modifications or just universal design to get in easily, that that is a barrier. That could definitely be a safety issue where wheelchairs, mobility, aids, feet, dogs are concerned.

Claire Stanley:

Exactly. Somebody, an elderly individual might just take a couple of minutes longer just by virtue of their age. If a wheelchair ramp has to be deployed, that’s going to take more time. I have a service dog I get in first. She has to follow me. That’s going to take extra time. So definitely all those variables to consider. I’ll just throw out one other thing. There’s several pieces of legislation that are considering these issues. There were two different laws in both the Senate and the House back in 2018 I want to say, but they got sidelined, because of the COVID pandemic, and so they lost steam for a while, but we hear that things are bubbling up to the surface. Again, I had talked about those leads in Congress that we met with, so they’re starting to bubble up again and they include a lot of different things.

But one thing that we talked about back in 2018 and we’re talking about again, that I think is important, is an element about who would qualify to be able to use autonomous vehicles. Not everywhere, but at the state level. There’d been murmurs in a lot of different states, yet you would still have to pass the general test to have a driver’s license to use an autonomous vehicle, which of course is terrifying to the disability community when we’re making the point that because of AVs, the non-traditional driver will be able to use them, that’s what’s so exciting. And yet states for control reasons, I’m not sure what their thought process is, they’re saying in certain situations that people would still have to have a traditional driver’s license. And so in several of the pieces of legislation that we’ve supported, that’s been a big element of the law that we have said, “Yes, yes.” And we’ve pointed to and said, “Please don’t inadvertently cut us out because people are anxious and they just want to hold onto what they know when we’re saying our community should be able to use these.”

Raquel Rosa:

Absolutely. As somebody who does not own a vehicle, by choice, I think that that’s just another pathway for people who may need to get somewhere quickly and not rent a vehicle, or hail a taxi, or take the bus, or whatever. I think all of what you’re saying, Claire, is totally in alignment with just universal access and that’s all we want, and I think that’s got a lot to keep marching on for.

Claire Stanley:

Exactly.

Michelle Bishop:

Claire, thank you so much for joining us today. This was fantastic and really fascinating for those of us who did not ride in an autonomous vehicle for this episode. So thank you so much for joining us, Claire. We really appreciate it, and I think a couple of us got to ride in an autonomous vehicle for the spotlight story. Take it away.

Raquel Rosa:

All right, so now we are going to listen to a sound clip of Jack, Marcia Baldwin, who is our deputy executive director for training, technical assistance and operations, and I, we were all in the vehicle and giving a on the ground experience as it navigated from the restaurant. We had dinner back to the hotel. It was a pretty surreal experience, I think. Definitely pros and cons. We’re really looking forward to having you all listen to it and you should hit us up with your thoughts. Jack, what’s our email address? Jack, how can people send us feedback?

Michelle Bishop:

Did he disappear? Wait, should I just-

Raquel Rosa:

I guess.

Stephanie Flynt:

Jack’s voice has changed, it’s podcast@ndrn.org.

Raquel Rosa:

Excellent.

Michelle Bishop:

Our loyal listeners can reach us anytime at podcast@ndn.org.

Raquel Rosa:

That’s right. We want to hear from David Boyer, Tina Pinedo-

Michelle Bishop:

My mom.

Raquel Rosa:

David Card

Stephanie Flynt:

Yes.

Raquel Rosa:

And Michelle’s mom, because I can confirm as of this morning that my mom does not listen to the podcast.

Michelle Bishop:

Oh, no. Another mom problem.

Raquel Rosa:

All four or five of our listeners, please email us and please let us know what you think about our experience taking Waymo.

Audio:

Hello from Waymo.

Jack Rosen:

So we are recording this episode or something of the PandA Pod from a self-driving car, seeing if this can solve a lot of mobility concerns for people with disabilities. I don’t know. What’s your initial reactions? I am a little nervous, to be honest.

Raquel Rosa:

Yeah, it’s pretty strange to see the wheel in motion and nobody’s behind it. It’s like a haunted vehicle.

Marcia Baldwin:

This is Marcia. This is the coolest thing I’ve ever done. And as the mom of a person on the autism spectrum who does not drive, I can’t wait for driverless cars to become the norm.

Raquel Rosa:

And as a person who chooses not to drive, this sounds like a really nice backup situation. I could get around like this.

Jack Rosen:

Okay, so it’s got a few options in it. You can tell it to pull over, you can call support. Hopefully we will not be needing that one and we can play music. I don’t think we’ll be using that one quite yet since we want to be able to get the audio, but it does a decent job turning, I have to say. I was worried it was going to be a little jerkier.

Marcia Baldwin:

Yeah. It is definitely staying off the main roads.

Raquel Rosa:

Yeah.

Jack Rosen:

Yes.

Marcia Baldwin:

It is taking a circuitous route.

Raquel Rosa:

Ooh, Marcia, I think you have your future on the PandA Pod. On the PandA Pod.

Marcia Baldwin:

Sorry. This is a onetime guest appearance on.

Raquel Rosa:

Dave Boyer, read it and weep Marcia’s on the pod and you are not. Oh, and also mom, who’s not listening, mom, I’m in a driverless car.

Jack Rosen:

Okay, let’s see. It’s at a stop sign, it stopped.

Marcia Baldwin:

And we’ve got people across the street. It acknowledges that there are people around and it is driving with caution. That was a better stop than I do when I drive.

Jack Rosen:

I know, right? Same.

Marcia Baldwin:

Yes. It did a full stop. It was not a rolling stop.

Jack Rosen:

Oh, okay. It knew there was a speed bump and slowed down. You know what? I miss that sometimes, so this thing might be a better driver than me and Marcia’s.

Raquel Rosa:

This is nice. I’ve been in Marcia’s car. She’s a very good driver. But as somebody who takes public transit all the time, I can say that this is much smoother than a lot of bus drivers.

Marcia Baldwin:

So now we’re behind an ice cream truck.

Raquel Rosa:

Ooh, ice cream.

Marcia Baldwin:

That is going…

Raquel Rosa:

Very slowly.

Marcia Baldwin:

Less than 10 miles per hour.

Jack Rosen:

In the middle of the night through a…

Raquel Rosa:

Residential neighborhood.

Jack Rosen:

Yeah.

Marcia Baldwin:

This is so-

Jack Rosen:

Well, I’d rather be in this car than that one.

Marcia Baldwin:

Nice. That one was driving with the door open. That’s not safe at all.

Raquel Rosa:

Oh, we’ve got the turn indicator.

Marcia Baldwin:

This is absolutely wild.

Jack Rosen:

Okay. It got in the other lane when it saw a bus was merging in.

Marcia Baldwin:

It does make me feel a lot safer that there are virtually no other cars on the road.

Jack Rosen:

Yes.

Raquel Rosa:

Oh, totally. Yeah.

Jack Rosen:

Yeah. I don’t know why it’s shifting lanes, but it is.

Marcia Baldwin:

One of the other things that I like is that on the front panel, it tells us our estimated time of arrival.

Raquel Rosa:

I think it drives in the right lane by default, because I think it goes slower than most of the traffic on the road. It’s only going 30 miles an hour in a 40 mile an hour zone.

Jack Rosen:

Oh, you’re right.

Marcia Baldwin:

Highly observant.

Jack Rosen:

Okay, so it might have some trouble dealing with DC and Maryland drivers where they’re going 50 in the right lane.

Marcia Baldwin:

That is true.

Raquel Rosa:

Exactly, yeah.

Marcia Baldwin:

Which is why you don’t find driverless cars on beltway of DC.

Raquel Rosa:

Notice that he didn’t say Virginia drivers.

Jack Rosen:

They’re banned in their own unique ways.

Marcia Baldwin:

For those of you in the DMV that that’s a hard joke right there.

Jack Rosen:

To be fair, they couldn’t drive in Virginia because it’s nothing but highways anyway. Be a little hard for it.

Raquel Rosa:

There’s plenty of non-highway in Virginia.

Jack Rosen:

I don’t know if that’s true. But no, it seems like this could be pretty useful for people with disabilities. I don’t know if they have a wheelchair accessible version of it. There wasn’t a lift or anything like that attached to it, but if you’re blind, or don’t drive for a variety of other reasons, seems like it’s a pretty good option. And…

Marcia Baldwin:

Okay, we’re coming up to a stoplight in a fairly busy intersection and some exits to get on a highway. It is definitely taking the long way back.

Raquel Rosa:

Oh, I just realized that it also-

Jack Rosen:

Oh, yeah. Okay. Get that on the-

Marcia Baldwin:

There’s an animated map that shows-

Jack Rosen:

What it sees, yeah.

Raquel Rosa:

Cars and the traffic signal and the other cars, it shows where they’re turning the ones that are stationary. Wow.

Jack Rosen:

Raquel, is it recording on your end?

Marcia Baldwin:

It’s funny it doesn’t have-

Raquel Rosa:

Son of a gun. No, it’s not.

Jack Rosen:

We were just saying how for a lot of people with disabilities, if you are blind or low vision, even if you have an anxiety disorder and don’t want to have to interact with a driver dead in a stranger’s car, well, there’s no stranger here. It’s just a machine driving you not quite sure what to make of that, but it is pretty cool.

Raquel Rosa:

Yeah. Jack, I’m glad you talked us into this. This was…

Marcia Baldwin:

I’m so excited.

Raquel Rosa:

Very excited.

Marcia Baldwin:

I would’ve done this just to do it with no destination.

Raquel Rosa:

So not only do we have a destination, we have the bonus of you being on the pod.

Marcia Baldwin:

It’s too bad there’s no narration available.

Raquel Rosa:

Yeah, I agree. I agree. Then that, I’m glad you brought that up because not only is there no narration, I wonder if, because the screens are all in English, I wonder if there is a way of customizing it for other languages.

Jack Rosen:

Well, let’s see. There’s a menu. Map view, about this, riding tips, camera. Oh, we are being recorded by, it doesn’t look like there’s another language option, which is odd given that is in Phoenix, you do have a large Spanish-speaking population here.

Raquel Rosa:

Yes.

Marcia Baldwin:

Well, and more importantly for anyone with visual disabilities, they would not be able to keep track of this display screen.

Jack Rosen:

Yeah, that is true. I’m not seeing any sort of… A, it doesn’t narrate automatically, and I’m not seeing any sort of enable voiceover option.

Marcia Baldwin:

No. If Google Maps can talk to you or Waze can talk to you, surely this driveless car could talk to you.

Jack Rosen:

Yeah, definitely could.

Marcia Baldwin:

And it had a welcome message when we got in. We were talking over it. It is definitely staying off the main roads. I do find that interesting and probably safer.

Raquel Rosa:

Yes, it does take a lot longer.

Jack Rosen:

On the plus side, at least for now, while it’s in the demo stage for folks who are lower income, I did notice that this costs less than a competing rideshare company from the same location we were leaving, back to our hotel. And well, I guess you don’t have to tip it. It’s not going to lower your Uber rating if you don’t tip the robot, so that’s a nice bonus.

Marcia Baldwin:

I don’t think I’ve heard of any of these driverless vehicles being wheelchair accessible yet.

Raquel Rosa:

No, no.

Marcia Baldwin:

I would certainly hope that that would be high on the priority list.

Raquel Rosa:

Yes.

Marcia Baldwin:

And other mobility aids. If somebody uses a walker, anything that could be collapsed and put in the trunk, there’s no obvious.

Raquel Rosa:

I wonder if you can call one-

Marcia Baldwin:

Storing.

Raquel Rosa:

… from the airport.

Marcia Baldwin:

Oh, because the airport’s pretty congested. I think it would be a high traffic area. I wonder if it would even go there.

Raquel Rosa:

Ooh, that’s a good point. Well, we’re all leaving tomorrow, so maybe somebody will give that a whirl. Oh, no.

Audio:

Almost there. Don’t forget your belongings.

Marcia Baldwin:

Nice.

Jack Rosen:

Okay. Thank you. Self-driving car for guesting on the pod.

Audio:

The doors will remain locked when we arrive. Pull the handle twice to exit. The first pull unlocks. The second opens the door.

Raquel Rosa:

Oh, it’s so cool.

Marcia Baldwin:

Okay, interesting.

Jack Rosen:

Is it?

Marcia Baldwin:

It’s letting us out here and not pulling into the hotel.

Jack Rosen:

Okay. Yep, all right that is it.

Audio:

Please make sure-

Jack Rosen:

Thank you.

Marcia Baldwin:

Thank you.

Jack Rosen:

All right, let’s take a, all right.

Michelle Bishop:

So cool. Totally not at all jealous that I wasn’t there when you guys got to ride the autonomous vehicle. That’s fine. No, it’s fine. I’m totally not jealous. It’s cool. Whatever. Anyway, moving on, Stephanie. Oh, no. Why do I do this to myself? Stephanie, do you have a joke for this episode?

Stephanie Flynt:

Yes, I do have a joke today and it’s a good one. Why don’t oysters donate to charity? Why don’t they donate to us?

Jack Rosen:

Why?

Stephanie Flynt:

Because they’re shellfish.

Raquel Rosa:

Oh my goodness.

Michelle Bishop:

I knew that answer!. I knew the answer to that one and I couldn’t get to on mute button, because my OneNote was blocking my Zoom. I’m so mad, I’m so mad.

Stephanie Flynt:

Maybe you’ll know next time.

Michelle Bishop:

All right.

Jack Rosen:

Thank you for listening to maybe the least organized episode of the PandA Pod ever.

Michelle Bishop:

Please do not email podcast@ndrn.org because I went into a Hulk-like rage the end of an episode. I’m here issue a formal apology. Stephanie, fabulous joke this month. Please don’t email us at podcast@ndrn.org. Jack, where can they follow us on social media?

Jack Rosen:

You can follow us on Twitter, Instagram, Facebook and LinkedIn, and you can now follow us on Threads, where every day I am annoying Mark Zuckerberg until he rolls out accessibility features.

Stephanie Flynt:

Woo-hoo.

Jack Rosen:

All right. Thank you folks. Until next time.

 

Michelle, Raquel, and Stephanie talk with Mia-Ives Rublee about the Disability Justice Movement. Then Stephanie sits down with Maddie Crowley from Disability Rights Florida, for a discussion about what it means to be LGBTQIA+ and a person with a disability.

Links:

Full transcript of this episode – https://www.ndrn.org/resource/pandapodjune23/

Ten Principals of Disability Justice – https://www.sinsinvalid.org/blog/10-principles-of-disability-justice

Transcript:

Jack Rosen:

All right. And welcome to the PandA Pod. We have a very special episode for you today. Oh, I don’t like “very special episode” given the topics we’re talking about. Makes it sound like an after-school special, but-

Michelle Bishop:

It sounds like an episode of Blossom or something.

Stephanie Flynt:

I just don’t like the term, special, anymore. It needs to go away.

Michelle Bishop:

If anyone of you knows what Blossom is?

Stephanie Flynt:

Who’s Blossom?

Jack Rosen:

Wait, no, it’s the Lady from the Big Bang Theory who’s now the host of Jeopardy, but-

Stephanie Flynt:

Oh, Amy! Amy Farrah Fowler. I know who that is.

Michelle Bishop:

Okay, she was Blossom first. See, this is why we can’t record episodes without Raquel, okay? Somebody else has to be as old as me and remember these things. I can’t just be out here on my own remembering 90s stuff without anyone to support me. We need Raquel. I can’t do this.

Stephanie Flynt:

All by myself. Okay, I’m done.

Michelle Bishop:

Okay. Episode is completely off the rails. First of all, what are we even talking about? And since when does Jack introduce the episode?

Stephanie Flynt:

I think Jack is like, “Oh, my God, just say words that I can edit.”

Michelle Bishop:

He’s so mad that we call him a producer and not a co-host, I feel he’s secretly seething about this and he is trying to take over the episode.

Stephanie Flynt:

Do you want to be a producer-host?

Jack Rosen:

That sounds like more work.

Stephanie Flynt:

Well, you’re already producing it, and you already say things. You’re already doing some of those things.

Michelle Bishop:

Welcome-

Stephanie Flynt:

You even came prepared with… Okay, sorry.

Michelle Bishop:

Welcome to the PandA Pod. This is not a very special episode because we don’t do that. I am one of your hosts, Michelle Bishop, Voter Access and Engagement Manager at the National Disability Rights Network.

Stephanie Flynt:

And I’m Stephanie Flynt, Public Policy Analyst here at the National Disability Rights Network.

Michelle Bishop:

Our third host, Raquel, is on vacation, and we are very happy for her about that. So, you’ll hear her a little later in the episode, but not right now. I think we do have a big announcement, Stephanie. We are supposed to make a shout-out to one of our loyal listeners.

Stephanie Flynt:

Yeah, yeah. Also, too, if you guys are interested or if you guys would like a shout-out, feel free to email us and we’ll take a poll on whether or not we actually want to shout you out. You can also use our email that I honestly forgot that we had until now, podcast@ndrn.org. It’s just the way that it sounds and is spelled. But the shout-out that we are going to give this week is to one of our very own who works at Disability Rights, Oregon, David Boyer, unless he’s moved and not told anybody.

Michelle Bishop:

Which is possible, but-

Stephanie Flynt:

Yes.

Michelle Bishop:

… Davy Boyer, thank you for listening, or if you use Stephanie’s screen reader, you’re Dave Boje.

Stephanie Flynt:

Boje, something like that. Boje, Boyay, so yeah.

Michelle Bishop:

Which is the same person except when he wears a fancy hat or speaks French.

Stephanie Flynt:

Yes, yes. I really want to see Dave Boyer speak French.

Michelle Bishop:

I was about to say, I don’t think he knows French, but as soon as I say that, I’m going to get a phone call or an email in French from him

Stephanie Flynt:

We’ll get an entire email, yes, in French from Dave. But yeah, thank you so much for being one of our awesome, loyal listeners, and your wish has been granted. And Nala was very upset that you were not at annual conference, but we understand that you have all the things and important things to do.

Michelle Bishop:

Nala is Stephanie’s service dog, if you don’t know Nala. And yay to our loyal listeners, we love you. Keep tuning in. And of course, also, shout-out to our producer, Jack Rosen. We appreciate you, Jack. I’m sorry we berate you every episode.

Stephanie Flynt:

Yes, bless your heart. You all, he really has to put up with a lot. I feel really bad for him because we have 15 minutes of prerecording, and sometimes he’s like, “Thank God I’m not recording this,” and then, sometimes he’s like, “I should have been recording this.” So, bless his heart. Thank you, Jack, for all that you do.

Michelle Bishop:

He just spends an inordinate amount of time listening to me and Stephanie and Raquel blabber about basically anything. So-

Stephanie Flynt:

Yes.

Michelle Bishop:

… we do appreciate you, Jack.

Jack Rosen:

Thank you, guys. And Michelle, why don’t you tell the folks why it’s a-

Michelle Bishop:

Don’t say very special-

Jack Rosen:

… special, not very special episode.

Michelle Bishop:

This episode of the podcast, we’re going to be talking about disability justice, the Disability Justice Movement. And if you’re thinking, “I’m pretty sure she means Disability Rights Movement,” I do not. We are going to be talking specifically about a newer wing of the movement called Disability Justice, which has a fresh new focus and is really about being much more inclusive and intersectional in our approach to disability rights work.

So, toward that end, we have an amazing interview for you today with the Disability Justice Initiative, which is part of the Center for American Progress.

Stephanie Flynt:

Yes, super excited to hear about this. I feel a lot of people, while in some ways they compliment each other, the Disability Justice and the Disability Rights Movement are things that we don’t always think about. I know that I personally have not always thought about disability justice always in the context of disability rights, and so I’m so excited to have the opportunity to listen through these interviews. But yes, totally excited, super excited. We are definitely looking forward to hearing about this movement and to hearing about this unique perspective. I feel I learned something new every single episode. And yeah, I am super excited to keep on learning, and I hope that all of you listeners continue to share that sentiment. So, yeah.

Raquel Rosa:

Mia Ives-Rublee is the director for the Disability Justice Initiative at the Center for American Progress. Prior, she has worked with Families Belong Together, DC Action Lab, Adoptees for Justice, Fair Fight, People’s Collective for Justice and Liberation, and numerous political campaigns. At the Foreign Foundation, in 2019, Ives Rublee created a disability-inclusion toolkit for nonprofit organizations.

But Mia is perhaps best known for founding the Women’s March, the Disability Caucus, and helping to organize the original Women’s March on Washington in 2017. She was named by Glamour Magazine as one of 2017’s Women of the Year by She the People as one of 20 women of Color in politics to watch in 2020, and awarded the 2019 Distinguished Alumni Award from the University of North Carolina’s School of Social Work.

Mia holds a bachelor’s degree in sociology from the University of Illinois at Urban Champaign, and a master’s degree in social work from the University of North Carolina Chapel Hill. Welcome, Mia. Super excited to have you on the podcast this month.

Mia Ives-Rublee:

So glad to be here.

Raquel Rosa:

Again, thank you so much for joining us. Would you mind starting off by telling us what the Disability Justice Movement is?

Mia Ives-Rublee:

Yeah. The Disability Justice Movement or framework was actually something that was developed by a group of black, brown, queer, and trans people, included people like Patty Burn, Mia Mingus, Stacey Melbrom, Leroy Moore Jr., Eli Claire and Sebastian Margot. And what they did was they saw that there’s a difficulty in really being able to focus on some of the most impacted folks within the disability community.

So, they created, basically, a structure or a framework that was able to look at how disability and ableism relates to other forms of oppression and identity. And it requires an understanding that disability is an identity that cannot be siloed away from other identities because there are disabled people with multiple marginalized identities.

Michelle Bishop:

Mia, could you talk to us a bit about how Disability Justice relates to what we would call the old-school Disability Rights Movement?

Mia Ives-Rublee:

Yeah. The old-school Disability Rights Movement was focused pretty much solely around accessibility accommodations and education, employment. The problem was that it was very white-centered or it utilizes a white lens to address a lot of the problems that were impacting the disability community.

And I think that a lot of people who didn’t fit that framework, including women, including folks who identify as trans or LGBTQ or were black, brown, Asian, all of these individuals didn’t feel a lot of the issues that they were impacted by, including things like criminal justice, reproductive healthcare access, et cetera, were actually being addressed by the Disability Rights Movement.

So, they wanted to create a structural understanding and a movement towards a collective liberation, so an understanding that disability was a part of an identity, but it wasn’t a single part, and that all of these individuals needed to be collectively together to work towards change that would actually work in tangent with other justice movements, including issues around racial justice, around reproductive justice, et cetera.

So, it followed a lot along the lines of those justice movements in saying, “Look, we’re not addressing the full pantheon of issues that affect particularly marginalized communities. So, how can we make sure that we address them and create more of a community and a collective liberation?”

Raquel Rosa:

Mia, on that point, can you tell us a bit more about the 10 principles of Disability justice that guide this movement?

Mia Ives-Rublee:

Yeah. Again, I’ve got to give props to the group that really started and helped put together this framework. I think a lot of individuals who don’t understand disability justice actually don’t know that there are these 10 principles. A lot of people utilize disability rights and disability justice interchangeably, not understanding that there’s actually a structure and a framework for disability justice that one has to go and utilize in order to be truly and faithfully towards what this group of individuals created.

So, there’s 10 principles, and the first principle is intersectionality. It’s a term that, again, much like disability justice is being utilized in a lot of different ways that it wasn’t intended to be utilized as, the term was developed by Kimberly Crenshaw who is a sociologist and a law professor who was looking at the perspective of black women and their experiences with not only racism, but also sexism, and how those can interlink to each other, not as in, this is a checkbox of, oh, this person has this and this, it’s saying, how do these systems interact with each other and create a unique experience for black women?

Luckily, that terminology and that understanding was expanding by her as she was hearing the experiences of other individuals, including the disability community. So, one of the principles, intersectionality, is an understanding, much like Andrew Lloyd who also has a disability, stated, “We do not live single issue lives and we don’t experience things in a single issue way.”

So, it talks about how ableism is coupled with all of these other isms and talks about white supremacy and capitalism and heteropatriarchy, et cetera, and tries to explain how individuals, who are marginalized, experience the world in a different manner that can degrade or negate their ability to interact with the world in a fair manner.

So, the second principle is leadership of the most impacted, which is pretty much what it says right there. It’s stating that a lot of times we create these movements, but they’re often led by people who aren’t actually the ones that are being affected by the issue. Take disability rights, a lot of disability rights fight has been actually done by parents who are not impacted, or the Disability Rights Movement is often led by white men.

So, what the Disability Justice Movement says is, “No, we don’t want that to happen anymore. We actually want the people who are most marginalized, people who are black, people who are queer, et cetera, to be the ones that are leading the charge, particularly on specific areas within the disability community, leading the conversation and leading the discussion around what should change.” So, that’s leadership of the most impacted.

The third area is an anti-capitalist politic, and this is where a lot of people get tripped up. So, an anti-capitalist politic is an understanding that ableism actually stems from capitalism. So, in an economy that basically puts a dollar amount on your ability to commodify yourself, we can’t overtake ableism unless we talk about the intrinsic problems with capitalism and the fact that, if you have a non-conforming body or mind that can’t “produce”, then you are always going to be seen as less-than in a society that runs on capitalism.

The next principle is commitment to cross movement organizing. I think this is something that we’ve seen has been a difficulty in the disability community. And I don’t think it’s just because the disability community doesn’t want to interact with the group or other movements. I think it’s both the inner and outer forces that are causing disability to often be siloed on its own.

And some of that has to do with the fact that a lot of times the Disability Rights Movement doesn’t really address the issues that multi-marginalized communities face, like, we’re not great at talking about the criminal justice system, we’re not great talking about reproductive justice issues. So, that often leaves us siloed.

And I think that what Disability Justice wants for folks to do is learn how to work amongst each other and not just be allies, but be comrades and be co-conspirators so that you’re not working isolated, and that you’re working amongst lots and lots of issues so that you can collaborate and create power through solidarity.

The next principle is interdependence. I think this is a really important key part, and I think it goes towards the last principle, which is collective liberation as well. And it’s an understanding that we have to meet each other’s needs in order to build towards liberation. So, it’s an understanding that we have to help each other out within the community.

I think a lot of times, what happens is, we get caught up in life, and sometimes we forget that we should be giving back to our community, we should be counting on one another to build community and to build that trust and to build resources within our community so that we can be stronger and so that we can build towards liberation.

The next principle is collective access, which basically, it relates to the interdependence and collective liberation, which is an understanding that we need to be in community with each other, and that we need to provide access to one another. So, if I gain access to something, I should keep the door open for all others to be able to gain access to similar resources that I had access to. So, it’s a collectivism ideal of sharing.

Then, collective liberation, of course, is saying that nobody should be left behind, and that is pretty self-explanatory, I believe, in that we can’t get liberation without ensuring that everybody is liberated and we can’t create a revolution and more equality if we don’t collectively do it.

Then, I think I did miss one of them, which was a commitment to cross-disability solidarity, which I think is extremely needed, particularly in the fact that so many of our disability organizations right now are so focused on one specific disability or the other.

We have disability orgs that are just focused on physical disabilities, and then we have some orgs that are just focused on chronic illnesses, or another that is just focused on intellectual disabilities.

And the problem is that we’ve unfortunately created a bit of an unbalance of powers within the disability community where individuals who particularly have developmental or intellectual disabilities, or mental health disabilities, don’t feel they’re part of the community. And I’m sure that stems from a lot of different things, including our own internal ableism.

But what this calls for is to understand that we can’t fight for one disability and think that we’re going to get our rights restored or have access to our rights, we need to build it for all of our community. So, that’s the basics for Disability Justice.

Michelle Bishop:

Mia, if our listeners want to learn more or get involved in the movement, where should they start?

Mia Ives-Rublee:

That’s a great question, and I think, for me, whenever I’m trying to learn about a new subject is, I try and go to the source. I try and find out more about it. And I really do believe that doing your reading, learning about the history of disability justice, reading from the individuals who develop disability justice is another great thing. Read the principles, read the essays that these individuals have written about disability justice, and do your homework.

I know it sounds boring, but I think that’s one of the best ways to get started, and then get involved in organizations that utilize a disability justice lens, and continue thinking about how to build more inclusive environments and communities that really instill some of these principles within them.

Michelle Bishop:

Thank you so much, Mia, for spending time with us and for giving us so much food for thoughts. I think, when we look at the Disability Justice Movement, the Disability Rights Movement, there’s a lot to unpack, and I feel that you’ve really enlightened us today with how we can deepen our advocacy, deepen our alliance with disabled people of color who belong to myriad communities. Thank you so much for being with us today. You’re the best. Thank you. Thank you, thank you.

Mia Ives-Rublee:

I’m so glad that you invited me on today.

Stephanie Flynt:

Awesome. Well, that was a super enlightening interview. I know that I learned a whole lot about the Disability Justice Movement, and I hope that all of you got to learn something new today as well. And we have a special treat coming up. I had the privilege of having an awesome, super enlightening conversation with Maddie Crowley.

They are the social media and content specialists for Disability Rights, Florida, and we both got to talk about our experiences of being LGBTQIA and multiple disabled. And I hope that you guys find this enlightening and hopefully enjoy this conversation as much as we enjoyed having it. So, yeah, here is our conversation with Maddie.

All right. We have come to the part of the episode where we have our spotlight story, and I and we are all in for a very special treat today. I’m super excited to have Maddie from Disability Rights Florida with us today. Maddie, introduce yourself to the people.

Maddie Crowley:

Hi. Thank you so much for having me. Hi, everyone. My name is Maddie. I use they, them, or she, her pronouns. I’m a non-binary white person, identify as multiple disabled within the LGBTQ community, and I’m comfortable with a lot of different identities, whether it’s lesbian, queer, your batch of identities. But yeah, I’m really excited to be here and chatting with you all and look forward to talking.

Stephanie Flynt:

Yeah, of course. And we are so excited to have you here. As most of us know, or as all of us know, June is Pride Month, super exciting time of year, super different time of year considering all the things that are going on. But today we really want to talk a lot about, it’s interesting, I was talking with Maddie before we started recording, and I was like, “We are totally twinsies,” because we both identify as LGBTQ and multiple disabled.

And it’s one of those things where we’ve seen that there are a lot of folks who are LGBTQ and disabled, and yet, a lot of the times we see that in the LGBTQ community accessibility isn’t always prioritized.

Maddie Crowley:

Yeah, for sure. I think that’s one of the… I enjoy Pride Month. I’ve actually yet to go to an actual Pride celebration, but I hope one year I’m able to-

Stephanie Flynt:

Yes.

Maddie Crowley:

Yeah, that’s actually one of my disappointments within the LGBTQ space as a space that prides itself on being inclusive and welcoming of all genders and sexualities and walks of life. Oftentimes, folks with disabilities don’t have the access to participate fully in their LGBTQ+ identities in that space because of inaccessibility and barriers and a lack of inclusion planning for LGBTQ folks with disabilities.

So, it’s something that I really hope will change with time, and I think it already has gotten better, and some folks have become more aware of disability accessibility and identity, but definitely has much more to go.

Stephanie Flynt:

Yeah, absolutely. And I totally agree. And I think a part of that is, and I’m not saying this is everyone, but I think that a lot of the LGBTQ community doesn’t necessarily think about this first. Usually, when you are thinking about how to make things inclusive of everyone, unfortunately, disability is usually on the back burner, just in general. I don’t think that it’s anybody trying to purposefully discount disability.

But when we talk about accessibility, it’s such a broad term, whether it be physical accessibility to an establishment that caters mostly to LGBTQ patrons, whether it’s accessibility in terms of folks with sensory disabilities, whether it’s accessibility in terms of ASL being offered at different shows, and that sort of thing, it’s something that I think some people, and I totally agree with you there, I feel a lot of people are now starting to think more about it because there is a lot more education around it. So, that’s definitely been great to see. And as Bob Dylan says, “The times, they are a changing.”

Maddie Crowley:

No, definitely. And I think, something else we were chatting a bit about was just some of the violent histories of folks within disability communities, but also the LGBT communities. They’ve kind of been weaponized against each other by folks in power. So, LGBTQ folks were medicalized as having mental illnesses or being disabled to justify different laws or different barriers or a whole host of things.

Then, the opposite way, sometimes people automatically think, if you’re disabled, you’re have a host of other marginalized identities, because I don’t know, people just have a way of just automatically assuming the worst about people, and not that being LGBTQ or disabled is a bad thing at all. I think there’s just a lot of historical overlap that makes bridging the communities a bit difficult, because rightfully so, there’s a lot of harm that needs to be worked through and discussed.

Stephanie Flynt:

Yeah, absolutely. And I think that there are a lot of people, particularly those who are anti-LGBTQ, that are just looking for something to blame in terms of somebody being LGBTQ and to justify the “choice” of that person. So, when they’re looking at that, they’re like, “Oh, well, it’s because they’re disabled.” I’m a blind woman, and I have been told that, “Oh, well, the reason you don’t like men is because you can’t see how attractive they are,” and I just-

Maddie Crowley:

Wow. Yeah.

Stephanie Flynt:

Yeah, it’s nauseating. It’s nauseating. Well, one thing that I’m definitely very curious to know, and I’m sure our listeners are very curious to know, because a lot of us have our own connotations of what pride particularly means to each and every one of us. So, I was wondering if you would mind telling the people what does Pride mean to you specifically?

Maddie Crowley:

That’s such a wonderful question, and honestly, something I’ll, transparently, sometimes reconcile a lot with, because I didn’t identify within the LGBTQ community until a few years ago, so I’m still navigating that space personally and understanding who I am. And I came out as queer earlier on, then, non-binary leader. So, it’s just understanding who I am, and then, further, becoming a part of the community as I’ve been ready to or comfortable in myself.

But I think, pride, to me, is that process and how LGBTQ folks hold each other in that process because every person in the community will tell you that coming out or navigating cis hetero patriarchy is a huge struggle. And I think, just the community’s ability to hold people and knew people within the community is something I’m really proud about, because that’s a huge form of love that I’ve been able to accept and experience in the time that I’ve navigated my identities.

And I think pride in that vein is ever-evolving. I think your experience with how you identify and how you relate to others and find communities ever-changing. So, I think pride for me is just that whole experience of community.

Stephanie Flynt:

Absolutely. And a community that encourages each other, supports each other. I remember “coming out” officially on Facebook a few years back, and I just remember getting different messages from folks going, “Love and support. I’m so excited for you. Welcome to the other side,” in that sense. But people are so quick to just say, “Hey, come out when you’re ready. Do what you need to do when you’re ready, and we will be here to welcome you with open arms.”

And really and truly, for what it’s worth, for me at least, I’ve noticed that being queer and disabled, I feel I’m just on this journey of self-discovery. And to be honest with you, I don’t think that’s ever going to change. So, I’m just along for the ride.

Maddie Crowley:

No, I agree. And I think that’s something that, to the beginning of the conversation, that a lot of people may find uncomfortable and maybe not be able to understand because some people are just so concrete and firm in their identities that they may feel discomfort in it being ever-changing, but I think because disability is always changing. Your experience within your body or acquiring a disability or whatever it may be, that’s ever-changing in the same way sexuality and gender can.

And I think that’s a really cool experience that disabled queer folks get to talk about and share space with each other about that maybe non-disabled LGBTQ folks can’t necessarily connect to in that same way.

Stephanie Flynt:

Yeah, absolutely, absolutely. Well, thank you so much for sharing your perspective. I know that I have thoroughly enjoyed our conversation today. I know that our listeners will get a lot out of this. And yeah, happy Pride. Hopefully you’ll get to go to a Pride celebration soon. I will say, there’s nothing like your first Pride celebration. Always fun, always a joy. But yeah, thank you so much for joining us today.

Maddie Crowley:

Thank you. It was great to be on.

Michelle Bishop:

That was awesome, Maddie. Thank you so much for sharing your story. Has been a very special episode? No, no, I’m not going to say that, I’m not going to say that. But it is June, which means we thank everyone who came out for our annual conference. We were in Phoenix, Arizona earlier this month. It was amazing to see you.

Thank you to Mia for talking to us about the Disability Justice Movement. If that’s not something that you’re currently using in your framework as a P&A about how you think about the work that we do, we’d love to put you in touch with folks like Mia to talk about it more. Also, just happy Pride month, everyone.

Stephanie Flynt:

Woo-hoo, happy Pride, guys!

Michelle Bishop:

Oh, no, Stephanie, do you still have a joke this month?

Stephanie Flynt:

Of course, I do. I have Pride in my jokes, so who’s ready for this one?

Michelle Bishop:

I’m not, but go for it.

Stephanie Flynt:

Okay. So, there are two terms to describe a dog who like to take bath. What are they? Anyone want to guess?

Jack Rosen:

A pool-noodle-retriever?

Stephanie Flynt:

You’re close in some respects. So, one of the terms is a shaampoodle, and then the other term is a Bath-it Hound.

Michelle Bishop:

Oh, man. Oh…

Stephanie Flynt:

Oh, man, this is the best part of the episode where I get to laugh at my own jokes. Hopefully you guys find them as funny as I do.

Michelle Bishop:

Without Raquel here to give you that polite laughter she does every time you tell a joke?

Stephanie Flynt:

I know, I know. Well, Jack, you’re just going to have to do that in Raquel’s place. But yeah, I think that that is all that we have for this episode. If you guys are wanting a shout-out similar to David Boyer’s, feel free to email us @podcastndrn.org, or you can use our personal email addresses if you’re that interconnected with us. But until then, see you all in July. Bye.

Michelle Bishop:

I think he only answers to Boje now. But also, guys, we promise not to record any more episodes without Raquel. It just goes off the rails way too fast. Thanks everybody. We’ll see you next month.

Jack Rosen:

And you can follow us on Facebook, Twitter, and Instagram at NDRAdvocates. And you can follow us on LinkedIn at National Disability Rights Network, as well as check out our website, www.ndrn.org. Until next time, see you folks.

Michelle, Raquel, and Stephanie talk with Terry Ao Minnis about what Asian American and Pacific Islander Heritage Month means to her and her work at Asian Americans Advancing Justice – AAJC. Then Mia Ives-Rublee joins us for the spotlight story as she shares her experiences as an Asian American adoptee with a disability.

Links: Asian Americans Advancing Justice: advancingjustice-aajc.org. Link to full transcript: https://www.ndrn.org/resource/pandapodmay23/

Michelle Bishop:

All right, everyone, welcome back to the Panda Pod, and oh my gosh, Stephanie. Stephanie, are you there? Are you there out in the podcastverse right now?

Stephanie Flynt:

I’m here in the podcastverse, yes.

Michelle Bishop:

Yes, because we have major news this episode. I mean…

Stephanie Flynt:

Very major news. Big league news.

Michelle Bishop:

Huge. Huge.

Stephanie Flynt:

Yes.

Michelle Bishop:

We have a third host.

Stephanie Flynt:

Yes! Yes, we do. And it’s because it’s what the people want, okay?

Michelle Bishop:

What the people want.

Stephanie Flynt:

We’ve got to give the people what they want.

Michelle Bishop:

Jack, insert the applause noise right here because everyone is so excited.

Jack Rosen:

Producers note, we do not have that sound effect.

Michelle Bishop:

Everyone say hi to Raquel, our new third host! Woohoo!

Raquel Rosa:

Hi.

Michelle Bishop:

So I am one of your hosts, Michelle Bishop, the Voter Access and Engagement Manager at NDRN, and

Stephanie Flynt:

I’m also one of your hosts, Stephanie Flint, Public Policy Analyst here at NDRN.

Raquel Rosa:

And I am Raquel Rosa, the third wheel, and my mom is also not listening to this podcast. I am with the Rep Payee team, and I am also with the Comms team.

Michelle Bishop:

I am glad you brought this up because I have a crucial update in the saga of my mom not listening to our podcast. So if you guys remember a couple episodes ago, I said I was going to call her out every single episode until she started listening because she had told us years ago that she listens to the podcast, and we have been referring to her as our only listener for frequently, and I found out she’s never listened. So, I mean, Stephanie had a really good point that if I just say on this podcast that she has to start listening or I’ll keep calling her out when she doesn’t listen to it, she’s never going to hear it. But you guys are not going to believe this. Someone else actually does listen to our podcast. Shout out to our good family friend, Andy. Andy, you are the best. And he definitely told my mom she’d better get her act together, and she has officially started listening to our podcast.

Stephanie Flynt:

Yay! Two listeners!

Michelle Bishop:

Two, we have two whole listeners. We have half as many people listening to this show as is required to make it, so we’re on our way.

Stephanie Flynt:

Can we get a third? Can we get a third? Can we get a third person to listen to this?

Michelle Bishop:

Yes. Everybody call your loved ones. We need them.

Stephanie Flynt:

Yes. Yes, and members of Congress. Okay, I’m done.

Michelle Bishop:

So with us, as always, is of course our faithful producer, Jack Rosen. Hi, Jack.

Jack Rosen:

Hey, everyone. And with that, I think we will go into the news. From the Salem Reporter, schools hiring emergency teachers for special education potentially violating federal law. More than 130 emergency licensed teachers are filling in as special education instructors in Oregon this year, short-changing thousands of students and potentially violating a federal law, that law being the Individuals with Disabilities in Education Act or IDEA. Jake Cornett, Executive Director of Disability Rights Oregon said, “High-quality teacher preparation matters for all students, but it’s doubly important for students with disabilities. Teachers who are under prepared are two to three times as likely to leave the classroom. This sort of high teacher turnover among special educators only makes a teacher shortage worse.”

Michelle Bishop:

So I didn’t even know emergency certification of teachers was even a thing. Has anyone heard of this before?

Stephanie Flynt:

Never heard of it. And also too, I’m curious about what criteria they’re even using. Or are they just like, whatever Joe Schmoes come in off the street, are they just saying, “You can be a teacher of…” You know, “You can be an educator of a student with a disability,” or, “You can be educators for students with disabilities in the classroom.” What?

Michelle Bishop:

It’s got… It must be related to… I mean, who knows? It’s got to be related to the teacher shortages caused by COVID, right?

Stephanie Flynt:

Yeah, that’s what I would think. But also too, it’s like Jake said, we need to make sure that these teachers are prepared for their sake, but also, too, the students. That’s really and truly what matters. You know, you see a lot of turnover. It’s already hard enough for our students to get the services that they need. Then you’re going to put a turnover in there of staff that is very likely to happen over the next couple of years, and all of a sudden, so many students are likely going to have to start from square one. And I know that people could also make the argument of, “No, that’s not going to happen,” but considering the current trends, even before the teacher shortage…

Michelle Bishop:

I did take a look at this article. It said that low-income students, students with disabilities, and English language learners were the most likely to have underqualified teachers as well.

Stephanie Flynt:

Not surprised. It’s painful. It’s really sad for our students, and it’s not what they deserve. I mean, free appropriate public education is a thing that all students deserve in these school systems.

Michelle Bishop:

And great quote from Jake Cornett. Keep fighting the good fight, Disability Rights Oregon. We see you. What else do we have in the news, Jack?

Jack Rosen:

From the body, reform of HIV criminalization laws gaining traction in Indiana, but not yet there. From a letter Disability Rights Indiana submitted to the state legislature, “Laws criminalizing people living with HIV without basis in current objective scientific evidence risk violating the Americans with Disabilities Act. Title two of the ADA prohibits discrimination on the basis of disability by state and local governments. Indiana’s HIV criminalization laws based on this outdated science may constitute disability discrimination because the laws expressly treat people living with HIV differently from others engaging in the same behavior.” Under the current law in Indiana, if someone spit on another person, for instance, those charges would be enhanced if the person doing the spitting had HIV. It would be enhanced to a felony charge.

Raquel Rosa:

I didn’t realize we went back to the 80s.

Michelle Bishop:

I never want to go back to the 80s.

Raquel Rosa:

Except for when Michelle and I do our sitcom.

Michelle Bishop:

That’s true.

Stephanie Flynt:

I would so watch that.

Michelle Bishop:

I don’t know if the people know that Raquel and I have an 80s sitcom that we star in in our own minds.

Raquel Rosa:

It’s Michelle and Raquel Take On, and then it’s whatever city we’re visiting.

Michelle Bishop:

And you know what we still wouldn’t have done in the 80s? Discriminated against people with HIV.

Raquel Rosa:

For the people in the back.

Michelle Bishop:

I mean, people who are HIV positive are protected by the Americans with Disabilities Act. It’s probably one of the major triumphs of getting that bill passed, and that was an historic piece of civil rights legislation. So there’s no justification. The science doesn’t support it. Federal law doesn’t support it. There’s no reason to do this.

Raquel Rosa:

Yep. Facts.

Michelle Bishop:

And Jack, do we have anything else in the news? Let’s talk about it.

Jack Rosen:

Yes. From ABC6, “Disability rights groups pushing to support Ohio Voters. Disability Rights Ohio has launched the Plan Your Vote Program in an effort to ensure people with disabilities don’t run into any issues casting their ballot this upcoming election season. The organization is providing some key tips, such as a poll worker can help you cast your ballot, you can take as much time as you need, and if you cannot enter your polling place due to your disability, you can vote curbside.” Though I may say more accurately, “If you can’t enter your polling place due to the fact that it is inaccessible to people with disabilities.”

Michelle Bishop:

Did you put a voting article in here just for me?

Jack Rosen:

It’s quite possible.

Michelle Bishop:

This is why you’re a producer extraordinaire. No, this is actually super important. Planning your vote. I’m so glad this is getting out there. First of all, shout out to Disability Rights Ohio. We love a PNA that gets earned media around their voting work. We’re doing a whole session about that at NDRN’s in-person conference in June, so you might want to check that out. Quick plug, quick plug. Jack, put the link to register in the show notes. Anyway, planning your vote is really, really important and especially for people with disabilities because you think you’re going to vote, you know when election day is coming, and the last thing you want is a surprise on election day when it’s time to get the job done, and things don’t go as planned. So this is something we talk about all the time for voters, and thank you to Disability Rights Ohio for getting the word out, especially in a year like this. It’s a really quiet election year when a lot of voters may not be paying attention, and they need that extra nudge.

So this month is actually Asian American and Pacific Islander Heritage Month, which NDRN is so excited to celebrate with a good friend of ours, Terry Ao Minnis. Terry is the senior director of the Census and Voting programs for Asian Americans Advancing Justice, AAJC. She was part of the litigation team that challenged adding a citizenship question to the 2020 census, co-chairs the Leadership Conference on Civil and Human Rights Census Task Force, and was part of the Department of Commerce’s 2010 Census Advisory Committee, as well as the Census Bureau’s National Advisory Committee on Racial, Ethnic, and Other Populations.

In terms of voting rights, she was a leader in the 2006 reauthorization of the Voting Rights Act. Snaps to that, incredibly important moment in American history. She has been counsel on numerous briefs filed before the Supreme Court on voting rights cases, including Shelby v Holder. No snaps to that, also an incredibly important moment in American history. Minnis was named one of the four living 2020 National Women’s History Alliance honorees, Valiant Women of the Vote. She is one of Now’s 100 Sisters of Suffrage as part of their celebration of the centennial anniversary of the passage of the 19th Amendment. Major snaps to that, incredibly important moment in our history. This is an all-woman hosting team, of course. And she received her Juris Doctorate from American University, Washington College of Law, and her bachelor’s degree in economics at the University of Chicago. Terry, thanks so much for joining us today.

Terry Ao Minnis:

Thank you, Michelle. Glad to be here.

Jack Rosen:

Thanks for joining us, Terry. We’re thrilled to have you on for Asian American and Pacific Islander Heritage Month. Can you get us started by telling us more about the month and what it means to you?

Terry Ao Minnis:

To me, Asian American, Native Hawaiian, and Pacific Islander Heritage Month, it’s a time not only to reflect on, but also to celebrate all that our communities have accomplished, overcome, and continue to battle for with respect to our future. In our month, there really is so much to celebrate, including being the fastest-growing population in the country, a growing representation of Asian Americans in Hollywood, and those in our organization and within the community who are making sure our community is represented in the conversations and fights for civil and human rights.

Of course, there’s still so much work to be done to create a fair and equitable society for all, including taking measures to ensure our community members can feel safe in public spaces, giving our community and ally communities ways to intervene safely when confronted with anti-Asian hate, and from ensuring that all Asian Americans are counted in the census, to fighting for our right to vote and equitable access to the ballot box.

Heritage month is the time to center our community, intentionally reflect, and publicly name how far we’ve come as a community, while acknowledging how much further we need to go. For me, it’s also a chance to be in solidarity with so many amazing advocates, such as yourself, both inside and outside the Asian American community, as we all band together to achieve the promise of equity and diversity in our country.

Michelle Bishop:

So Terry, I got way too excited about all the voting rights stuff in your bio, and there’s a reason for that. Everybody, all of our listeners know that voting is my jam, but also you and I have actually worked together for a long time, and we talk about this issue a lot. I’m wondering if you can talk a little bit about what intersection you see between being a disabled American and being Asian American. What should our listeners who work in the disability community be paying attention to?

Terry Ao Minnis:

Thanks, Michelle. I’d like to start, as you often remind us, people with disabilities come from all communities. The Census Bureau’s, American Community Survey shows that currently at least 8% of the Asian American community are members that have a disability. Often we know that in our work particularly, we can silo the work and the efforts around our advocacy, but the reality is that these are not separate communities, but rather communities that intermingle and share issues, concerns, and needs, and exactly as you said, are where we’ve had opportunities to really collaborate and work together.

So I think one area where there are particular commonalities are for those Asian Americans that are limited English proficient or LEP, right? And that is somebody who is noted as a person who speaks English less than very well. That’s the actual definition for that. And due to the racist immigration laws historically in this country, the Asian American community is highly immigrant. I believe we’re at about over 90% of our community who are either immigrants themselves or children of immigrants. So as a result, we see that Asian Americans speak dozens of languages and dialects, and three out of four Asian Americans in America today speak a language other than English at home.

We also know, thanks to our Census bureau and the work that they do around collecting data, that 45.2% of Asian American citizens of voting age are limited English proficient and experience some difficulty communicating in English. So this is important in this context that we’re talking about because language barriers are a major obstacle for Asian Americans when it comes to voting. Voting is a complex process for even fluent English speakers, so you can imagine for voters for whom English is a second language, that they will face even more confusion when trying to vote and navigate our complex voting system, especially if they immigrated from a country with a different, or in some cases, no democratic process.

So I would say for me that is really an area where we’ve often worked together, and that is dealing with the barriers that our communities face when trying to vote. In addition to the language barriers, or in some ways related to what I was just talking about, Asian Americans have long experienced voting discrimination, and this discrimination is rooted in the false stereotype of Asian Americans as outsiders, aliens, and perpetual foreigners. Based on this perception, we know that Asian Americans were long denied rights held by US citizens, including the ability to vote for most of the country’s existence, including a time period in which the community was the only community expressly prohibited by statute from entering this country. And this is all despite actually having a presence in the United States since the mid-1800s. So we see this discriminatory attitude towards Asian Americans running rampant throughout the political process, whether it’s verbal attacks that we’ve seen lobbied against Asian American candidates or voters, we’ve seen it through political ads that use racially discriminatory imagery or perceptions.

We can imagine that these types of incidents likely have a chilling effect on Asian-Americans willingness and desire to participate in the political process as the constant and consistent message they’re receiving is that they’re somehow un-American and not valued or eligible to vote and don’t belong. I think in our conversations, Michelle, it seems as though oftentimes voters with disabilities also can face that at the polls, much as Asian American voters when they go to vote can sometimes be stopped or questioned suspiciously as to whether or not they have a right to be there, or whether they should be allowed to vote. I think we’ve talked about voter challenges that can occur, whether that is challenges by third parties or challenges by poll workers. And that is something that we have worked together on and produced Know Your Rights Fact sheets about for both of our communities, recognizing that our communities are often the ones that are targeted for suspicion, for questioning whether or not we should actually be allowed to cast a ballot.

So I think for advocates in the disability community what to look for, I think a lot of what we do is work to support one another because often it’s our communities that can be left behind when advances are being sought. And I don’t say that it’s an intentional leaving behind. It’s not as though people within our communities, our allies are targeting. Certainly we know there are others outside of our allies and our communities that are targeting our population. But even within, I’d say that what ends up happening is that it can be a little bit more difficult or a little bit more costly to try to address the needs for our communities, but that doesn’t mean it shouldn’t be done. And what we sometimes come across is the desire to advance a policy, and that desire to get something done sooner rather than later makes it a little bit easier for people to put the harder pieces to the side, and say, “We’ll deal with that later.”

And unfortunately, what happens is that it doesn’t get dealt with later. And what we see is that as policies continue to advance, our communities continue to get left further and further behind. It’s not a stagnant; it’s not a status quo for our communities. If others are being advanced, then by standing still, we are actually falling behind. And that’s something that is just not acceptable.

And so I know that certainly when I am looking at voting policy works, and as I know you often do, we will raise issues for each other if we don’t happen to be in the room, and suggest that the other person’s community be engaged in the discussion because it’s important that when people are working on policy and don’t need to think about those who may have additional needs that must be addressed, that they don’t think about it. So it’s important that we hold them accountable and remind them, “Hey, are you making sure you’re checking in with folks who represent those with limited English proficiency? Are you checking in with people who represent voters with disability?” Right? “Are you making sure that these policies that you are seeking to advance are ones that actually benefit everybody, particularly those that may have the greatest need or have been the ones that have been left behind the most often?”

Raquel Rosa:

Thank you, Terry. I was hoping that you could share with us where our listeners can learn more.

Terry Ao Minnis:

Sure. So I invite people to come visit our website at advancingjustice-aajc.org. From there, you’ll find information about my organization. We are a national nonprofit C3 whose mission is to protect and advance the human and civil rights of Asian Americans and to build a fair and equitable society for all. From that website, you can see the different programmatic areas that we cover. So I cover census and voting, but we also have a tech and telecom team, an anti-Asian hate portfolio, a litigation team. We have a growing community engagement, a field team. We also do work around education, immigration, affirmative action, and so much more. So I definitely invite people to come, and from our website you can connect with our other social media platforms, where we are providing information to interested community members, whether that’s more in the action alert side about how you can get involved, or as I mentioned some know your rights information fact sheets.

One thing that we certainly do on our end, and going back to the previous question, something that people can think about is when we produce community education materials, we make sure to do so in multiple languages when we can. We certainly have a high premium on making sure our materials are translated. For the 2022 election, we translated our materials into 13 non-English languages, and we make sure to provide that. Additionally, I will say, and I’m not saying that we can’t do a better job, and we’ll strive to continue to do that, is when we are looking at our materials, we also try to make sure that they are accessible for readers with disabilities. So Michelle has had the joy of me sending things to ask whether or not we are hitting the mark, and it’s something that definitely I know that we can do a better job, and we will certainly continue to work to make sure that what we’re doing is accessible to all the different members in our community.

Raquel Rosa:

Thank you so much, Terry, for joining us and for expanding our knowledge and insight of comrades in the field, people with whom we should be standing alongside. Your time and efforts are very much appreciated, and I just want to thank you on behalf of our podcast and DRN and the PNA network. Thank you so much.

Terry Ao Minnis:

Thank you for having me.

Jack Rosen:

Thank you so much, Terry. And now for our spotlight story with Mia Ives-Rublee about her experiences as an Asian American woman with a disability.

Mia Ives-Rublee:

Yeah, hey, my name is Mia Ives-Rublee. I am a Korean American adoptee who also has a disability, and I had an interesting experience growing up because I was an adoptee, so my experience as a Korean disabled woman is a bit different from the typical experience because my parents were white. And so I didn’t really have a really good sense of what it meant to be an Asian American growing up. My parents, I don’t think they were exactly prepared to raise a daughter who was a different race of them. They don’t give parents a handbook anyway, but they definitely don’t give adoptive parents a handbook on how to deal with the structures outside of the family that a child will face while growing up and becoming an adult.

So my parents, they tried their best. They sent me to Korean school, and I actually left because I got bullied because I didn’t speak Korean. And we went to a couple of cultural festivals and some theater shows, but I didn’t really have a good understanding of what it meant to be Asian American as a child. What I did understand quite fluently was what it meant to have a disability. It always felt like my disability came first in terms of my identity growing up. My parents were rabid activists and advocates for me. They made sure that the school took my rights into account. There were many days that my parents would storm into the school and argue with the principal, or argue with the teacher, or even argue with the county to ensure that I got access to things like accessible school buses, the ability to take certain classes, et cetera. And so for me, again, disability was sort of on the forefront of my mind growing up in terms of identity.

And then I went to… And there weren’t that many Asian Americans in my school. There was one Korean girl that I remember meeting in high school, and then there were some South Asians as well that I went to school with. But in terms of folks I had a lot of interactions with, I just didn’t have a lot to go off of. And so it wasn’t until I hit college that I decided to take it upon myself to actually do some sort of digging and reconnecting with that part of myself. And I think that sort of got kicked off by a friend of mine who I did acting with, and she was talking about some of the stereotypes that Asian Americans faced, and I was like, “Oh, wait. These are the things that I’m facing. These are the things that I experienced growing up as a child.”

I remember people making fun of my eyes. I remember them making fun of my hair, and getting told that I spoke English well, et cetera, and people talking to me about karate, and martial arts, and stuff like that. I remember that, but I just didn’t have the words to talk about my discomfort in it because I knew that people were stereotyping me, but I didn’t understand why. And it wasn’t until I met this friend in college who was talking about her experiences that I was like, “Oh, so this is what it means to be an Asian in America,” and that experience of reconnecting with her and with others was huge for me because, again, I just didn’t have that at growing up. And I continued to sort of do some background research and reconnect with folks in the Asian American community.

It had to be very intentional on my part to try and make sure that I did get connected, and I just can’t thank my friends enough for taking me under their wing, and teaching me everything, and really including me in a lot of the events and activities that they like to do, including celebrating Lunar New Years and doing all of these other fun events with AAPI organizations.

And then I actually got the awesome opportunity to do some campaign work in North Carolina, doing outreach to Asian American and Pacific Islander communities. And it gave me a chance to just sit in communities, communities that I sort of lived near, but never got to really interact with as a child. I got to go and interview them and talk to them about their experiences and the concerns that they had, et cetera. And it was just an awesome experience to get to do that in my home state. And then I got to go down to Georgia and do that again. And it’s just such a unique opportunity to sort of reconnect with things, and to better understand folks who look like you, and who have similar experiences to you. And so all of that was an amazing experience.

And then I got the opportunity to join the Presidential Advisory Commission on Asian American, Native Hawaiian and Pacific Islanders and have gotten to hear even more about different experiences across the AANHPI community is such a broad community. Over 60 to 80 different ethnicities and cultures go within that title of Asian American, and so it’s been an amazing journey. I wish it hadn’t been so hard to get reconnected and figure out who I was. And lately I’ve been able to talk about what it means to be an Asian American with a disability, and I think that puts another sort of color or another tint to the lens that I work with in terms of being able to talk about the stigma of disability in Asian American communities, and talking about how we address it to ensure that kids like me get to grow up feeling empowered, and feeling like they have people that they can look up to as they’re growing up.

Michelle Bishop:

Mia, as we take this month to reflect on the disability community and the Asian American community and where it is that we meet, it’s so powerful to just hear you talk about the importance of community and finding community in your life, so just thank you so much for sharing your story with us.

Mia Ives-Rublee:

Yeah, I’m so glad to have been able to share my story.

Raquel Rosa:

We want to thank our speakers today for being real with us and reminding us about the diversity of the disability experience.

Michelle Bishop:

Yes, absolutely. First of all, for the realness, because if anybody keeps it real, it’s definitely Terry and Mia, but also just that reminder that the disability community is so big and so diverse, and we are not all one color, we are not all one religion, we are not all one gender identity or sexual orientation. We don’t even all have the same disability. It’s such a large community, and there’s so much intersection between all of those identities that really create the disability experience.

Raquel Rosa:

And as we fade from our real talk, we’re going to fade into some joke talk. Stephanie, it’s all you.

Stephanie Flynt:

Oh, my gosh. Can we start calling it Joke Talk? Jack, I’m going to record a jingle, and I’ll send it to you for next month.

Michelle Bishop:

Please don’t do that.

Jack Rosen:

You have been promising me jingles for months.

Stephanie Flynt:

Well, okay. I need to do that.

Michelle Bishop:

Speaking of realness.

Stephanie Flynt:

That’s fair. [inaudible 00:32:13].

Jack Rosen:

I want the jingles!

Stephanie Flynt:

I know, I know. I deserve the shit, but okay, we need to figure out… We’ll do this offline, but we’ll figure out the list of jingles that you want, so that I can send you a comprehensive album.

Michelle Bishop:

Realness. Jack just totally called Stephanie out, first of all, for promising all these jingles. That was amazing. Also, I’m pretty sure I Want The Jingles is now the name of this episode.

Stephanie Flynt:

Yes.

Okay, I’m done.

Okay, so I actually have an announcement rather than a joke this time.

Michelle Bishop:

Plot twist.

Stephanie Flynt:

Yes, yes. So for those of you who don’t know, I have a guide dog, and her name is Nala. And Nala is a Labrador golden retriever mix, and she loves Michelle, and she loves Raquel and yes.

Michelle Bishop:

Me and Nala, we are besties. Besties for life, me and Nala. Yes.

Jack Rosen:

Does Nala not like me?

Stephanie Flynt:

No, Nala loves you too! But I always… Michelle and Raquel rhyme. She also loves producer Jack, always wants belly rubs whenever he comes by, and literally will wag her tail if he comes by and doesn’t stop by. She’s like, “Hello?”

Michelle Bishop:

Good save, Stephanie. Good save. Good save.

Stephanie Flynt:

No, no, no. It’s the truth. But anyway, so when we’re not at the office, Nala gets really lonely, and so I’ve decided that I’m going to get Nala a pet, and I’m going to get her a pet frog. You want to know why?

Michelle Bishop:

I’m so scared of where this is going, but yes.

Stephanie Flynt:

Because… Okay. Well, the frog is very likely… Studies show that the frog is very likely to find my jokes ribbeting.

Michelle Bishop:

That was…

Jack Rosen:

Oh, my God.

Michelle Bishop:

So much lead up for that joke.

Stephanie Flynt:

Jack, [inaudible 00:33:53]. (Laughs) I’ve been practicing that one for a week. Okay.

Michelle Bishop:

This whole episode broke my brain.

Stephanie Flynt:

Okay, I just made Michelle laugh. She is smiling, guys.

Michelle Bishop:

Oh, that’s so bad. All right, well now that is out of the way, we also want to take a moment to, of course, plug NDRN’s annual in-person conference that is coming up next month. The first week of June, we are going to be in lovely Phoenix, Arizona, and we will make sure that the link to check that out and get more details is in the show notes. All of us will be there, and you know you totally want to meet us in person.

Stephanie Flynt:

Yes. I was just going to give a plug for the public policy session because all the cool kids are going to be there, so don’t forget to sign up for that. Okay, thanks. Bye.

Jack Rosen:

All right. And you can follow us on LinkedIn, Facebook, Instagram, and Twitter. We lost the blue check, but we are still there. You can also…

Michelle Bishop:

I promise it’s still really us, even without the blue check. It’s still us.

Jack Rosen:

And you can visit our website, www.ndrn.org to keep up with all the great things we’re doing. See you next time, folks.

Michelle, Raquel, Stephanie, and Jack speak with people who knew Judy Heumann about her love of life, her sense of humor, and what it was like when you disagreed with the mother of the disability rights movement. Guests in order of appearance: David Hutt, Diego Mariscal, Kelila Weiner and Kylie Miller, and Maria Town.

Listen to Judy’s podcast The Heumann Perspective: https://judithheumann.com/heumann-perspective/

Stream Crip Camp: https://www.netflix.com/title/81001496

Read more reflections of the people Judy influenced: https://19thnews.org/2023/03/remembering-judy-heumann-disability-rights-policy-movement/

View full transcript of this episode on: https://www.ndrn.org/resource/panda-pod-tribute-to-judy-heumann/

Stephanie Flynt:

Hi folks, and welcome back to another edition of the PandA Pod. Now, this episode is going to be a little bit different this month. So for this episode, we are going to be paying tribute to Judy Heumann, or to who most of us know her as the Mother of the Disability Rights Movement. I’m super excited about today’s episode because you guys are going to get to hear from a variety of people who worked closely with Judy in various points, people who were very close with Judy, and people who were able to work with her in multiple capacities. So you’ll be hearing from David Hutt, our legal director here at NDRN, Diego Mariscal, CEO of 2Gether-International. Next we have Kelila Weiner, Judy’s personal executive assistant, and Kylie Miller, Judy’s digital content creator for the Human Perspective, among other digital content. And last but not least, Maria Town, the CEO of the American Association of People with Disabilities. So without further ado, let’s not waste any more time. Let’s get right into these stories and interviews.

Michelle Bishop:

David, can you talk a little bit about what it was like to work with Judy?

David Hutt:

So after I left New York and came to Washington to work with NDRN, which would’ve been in about 2006, 2007, I started working with Judy who was, at the time, getting very involved in the Convention on the Rights of Persons with Disabilities. So at the time, the United States had said, “We’re really not going to have anything to do with this international treaty on disability rights.” And Judy was very active at the time to try to get both the United States to first sign the treaty, and then eventually for the Senate to ratify the treaty. And she had this both toughness and incredible warmth that she could combine. So the advocate I saw many times when she was working to organize the disability community, when she was making a point to whether it’s a government official or to a member of Congress, so she was definitely tough and had her points well out, but she also had this warmth, and it wasn’t combative in the fact that she was, “I’m right, you’re wrong.” It was a way that she persuaded people that she was right that was so effective.

And it was very rare that I was not in a meeting with Judy that she wasn’t trying to make some sort of connection with somebody. So she would hear a person with a disability having this idea, and she would try to connect them with someone else within the disability community. Or to the level of if she heard of someone who was having a difficulty, she would often call me up or some other folks at NDRN to say, “Hey, can you help me connect this person with the P&A in this state because they’re having an issue.” This happened a couple of occasions. Often it would happen with someone who maybe, when she was working on international issues, wanted to help that person get into the US or they were in the US and they were looking for services, and she would look to see if the P&A can help them. The more I worked with her, the more I realized just how she can make that one-on-one connection with people.

I used to joke in the first couple years that I worked with her just how intimidated I was, I was nervous and tongue-tied talking to her because of her great work and her great history, but then as time go on, she actually became a colleague and a friend, the more we worked together.

Stephanie Flynt:

I will say this, David, it is very hard for me to picture you being intimidated, so that is still something that I’m having trouble picturing. But all that to say, a lot of people have been sharing a lot of different stories about Judy and her character, and I know that you’ve been talking about a lot of the work that you were able to do with Judy. Do you have any favorite story moments? We all know how spunky she was, or at least those who knew her knew how spunky she was. And I mean, it only took you about five minutes to realize that she was very no nonsense, but like you were saying earlier, also had this way of talking to people that would make her listen rather than be condescending or what have you. But do you have any particular stories that really stand out to you about working with Judy?

David Hutt:

Yeah, Stephanie. So a couple of stories. So one, after I’d worked with her for a couple of years on various international issues and the disability rights treaty, we were in a meeting, I don’t know, maybe this is about five, six years ago, maybe a little longer than that, and I had some difficulties going with various things, and I had grown a beard and I was upset with a few things, and I was either going to reach out to her or she reached out to me, I can’t remember, but she looked at me and in such a nice way, she says, “You don’t look good.” And I don’t know if it was the beard she didn’t like, or if it was I looked drawn and tired, which is probably the case. And she said, “Hey, why don’t we get together? Let’s come over to talk.” And I was like, “Oh my God, Judy’s going to have me over to her apartment.” And she invited me over and we sat down and talked about some issues that I was having and some ideas she had.

Given Judy, she put me in contact with a couple of people and later that day emailed me and said, “Oh, you should talk to this person, or that person,” quickly followed up. Then I went over there a few other times, we had some mutual friends, we went out to dinner or to lunch with a few times. So it was just that ability to really help somebody. And I remember at the memorial service, a lot of people were laughing at the stories about how she always had her phone with her, and she was always saying, “Oh, I got to take this,” or, “I’ll be right back.” And every time I was with Judy, whether it was personally or through a more professional reason, she was always that way, “Oh, wait a minute, I got to take this. I’ll be right back,” or, “Let me just text this person.” So that’s one of my, I think, as a friend of hers, one of my favorite stories, is just that empathy to reach out and notice that I was struggling with a few things.

Raquel Rosa:

Diego, thank you so much for joining us today. If you could start by sharing with us how you first met Judy, we’d love to hear that.

Diego Mariscal:

Yeah, of course. Thank you for having me. I feel like it’s such an honor to get to talk to Judy at length. Like you said, we did have a very special and unique relationship. So Judy and I met about eight years ago, so I feel like it’s not that long ago, at the UN Conference of States Parties in New York. I knew who she was, and so when I saw her, I remember getting her card and immediately having to go to the bathroom to calm myself because I was so excited that I got to meet Judy Heumann. And from there, we’ve developed this very unique friendship, and I don’t know if you want me to go into the specifics of how that developed, but we ended up, for the past eight years, really quickly, we would talk almost every day. She was my emergency contact. I mean, really it was she was like my second mom. And so it was such a privilege and a blessing to be able to have that relationship develop so quickly and organically.

Raquel Rosa:

Thank you so much. So obviously you had this strong personal connection. I was hoping you could share with us a little bit about what she was like as a person.

Diego Mariscal:

So I can get a little bit into how we developed that relationship, and that I think would yield some light into how she was as a person. So we met and she was working at the State Department at the time, extremely busy, but she immediately said, “Yeah, let’s of course get together and talk about what you’re working on.” And being the extreme extrovert she was and how busy she was, it took a couple of months to schedule the call. But once we got on the call, she was interested in what we were doing. But the thing that really hooked her was when I told her that I’m originally from Mexico because her husband is from Mexico. And so when I told her that, she was like, “Oh my God, here, take down my cellphone and we have to get together for dinner.” And so I did.

And again, it was one of those moments where I couldn’t believe what was happening. And a few weeks later, I texted her about getting together and we went out for ice cream. And so I share this story to show that Judy was so much about getting to know people for who they really were, even though she was really a celebrity and often called the Mother of the Disability Rights Movement, she was so simple and humble. And even the last text I have from her, I had gone on a trip to Cuba and her last text to me was, “I’m in the hospital, Jorge is also in the hospital. How was Cuba?” So if that doesn’t tell you how much she cared about other people beyond herself, I mean, it was an incredible, incredible person that keeps inspiring me every day.

Raquel Rosa:

I’m sure you had some fun and lighthearted moments together. Do you have any specific memories that you would like to share?

Diego Mariscal:

One of the last, in fact, I think the last in-person meetings that we had was at her house singing karaoke. We were singing Abba songs. And there’s a video of me singing with her karaoke, and that was the day before I went to Cuba.

Raquel Rosa:

Could you tell us what song you were singing together? I just want everybody to know.

Diego Mariscal:

Yeah, yeah. We were singing, I will definitely share with you, we were singing The Winner Takes It All, which seems quite fitting for the situation that we’re all in right now.

Raquel Rosa:

So ladies, I was hoping you can tell us a little bit more about what Judy was like as a person. Kelila, let’s start with you.

Kelila Weiner:

I knew Judy in the last part of her life, quite literally. And my impression of her was that she had her way of doing things and her way of being all figured out. And one thing that became abundantly clear and was very clear in life, and just became even more clear through the process of grieving her with her community, is that she was very familiar and she asked lots of people lots of questions right away, and maintained that getting to know people and connecting with them was one of her favorite ways to find joy in life.

So I think that’s a really big part of who Judy was and what she was like. And I also think that something that shone through a lot was how eager she was to work. I started this by saying that I knew her in her last part of life, but that doesn’t mean that she had or had any interest in slowing down at all, which was very admirable. And of course created lots and lots of work for Kylie and I, so we were never bored. That was one thing that I really admired about her. And one thing that came through pretty clearly was her affinity for her work and for working in general.

Raquel Rosa:

Amen to that. Kylie, can you tell us about how Judy was as a person?

Kylie Miller:

Yeah, I echo everything Kelila said. Something I keep saying to people is Judy was not interested in knowing people on a surface level, she was only capable of wanting to know really everything about someone if she could. At the top of every business call, she wanted to go around and not only know everybody’s name, but know where they’re from and if they had kids. And she would do this on business calls, she would do it at the grocery store. Really, she just had this intrinsic desire to know people well. And I think that’s why so many people feel so close to her in her passing, even people who haven’t met her. And I guess otherwise, personally, I think Judy really loved joy and joyous things. She loved theater, she loved music playing, and these are things that I think because of the intensity of her work sometimes aren’t talked about enough, just how much she loved color. She was so joyous about the Mexican culture of her husband, Jorge, and she really was just a vibrant person all around.

Raquel Rosa:

So as you’re telling us what Judy was like as a person and what your experiences were like with her.

Kelila Weiner:

Something that was funny to me was when Judy would choose to have a celebratory drink, it was pretty far between, but one moment that sticks out to me is another one of our trips where Kylie and I got to accompany her to New York. She received an honorary doctorate and also was their commencement speaker. And afterwards, in the hotel bar, she was like, “I am ordering a White Russian.” And we were like, “Okay. Odd choice, but absolutely.” And then she drank the whole thing. She was like, “That was great, and I’m glad I did it.”

Kylie Miller:

Yeah. Yeah, that’s a good one. Another that comes to mind is I went to a show with Judy called Hi, Are You Single? It’s a play by Ryan Haddad, and he’s a disabled actor, playwright, all things theater. And we went to go see the show at the Wooly Mammoth. And afterwards, it had been set up for Ryan and Judy to meet, they had a lot of mutual friends, and he was thrilled, he personally invited her to come. And we met, and he said that the whole show, he was watching Judy, because it’s a kind of monologue show, it’s a one-person show, so there’s a lot of audience interaction. And he said he was watching her and he could not get a read on her take on the show. He’s like, “Oh my God, she hates it, she hates it, she hates it.” He thought that the whole time. And the show’s really raunchy, it’s about his experience as a disabled gay man and trying to find people to go on dates with and stuff.

And he was like, “I know it’s not some people’s comedy, it might not have been your thing.” And she’s like, “Look, I’m no prude. I loved it, it was great.” So it was just a funny story. And I think I even echoed that. I’m like, “Yeah, no, Judy’s 75, but she’s not a prude. She’s not afraid of this type of thing.” And I thought that was a really funny interaction between the two of them.

Jack Rosen:

Thank you for joining us today, Maria. Can you tell us what Judy was like as a person?

Maria Town:

Judy was an incredible friend and connector. She was really good at maintaining relationships, but she was, if I can say this, even better at connecting people to one another. And if she knew that you were interested in voting, she would say, “Oh, well, have you talked with anybody at REV UP?” And she might connect you to AAPD’s REV UP team. Or if she knew you were autistic, she might just connect you with other autistic advocates. So things like that. She asked a lot of questions, and those questions could sometimes be very direct and straightforward. And for people who were unaccustomed to that, it could be a little off-putting. But for Judy, asking the tough questions was actually one of her primary ways of expressing interest and care, and engaging in things that she thought were important. Judy really believed in the, or I should say she insisted upon leadership by disabled people. She was always one of the first people to say, “Who’s at the table? Are they disabled? We need disabled people to be there.”

And I think Judy also really believed in the power of cross-disability organizing. And that was something that she really started with Disabled in Action and with other groups, I think I’m going to get the acronym wrong, but the Coalition of Disabled Citizens, and then the work that she did with the 504 protests, and [inaudible 00:16:58] and beyond. And it’s one of the things that I think she really contributed a lot to the AAPD board in was her perspective on why cross-disability organizing was important, how it was vital that we, as a community, really understood one another’s experiences and worked to support each other. Judy was an extrovert, she loved the phone, she loved to get together over dinner, and she also worked incredibly hard. I can’t tell you how often we would work together at 10 o’clock, 11 o’clock, 12 o’clock at night on key issues. And she and I worked together in a few different ways.

When she was at the Department of State, I was at the Department of Labor, but because of her work at the Department of Education, we did work together sometimes on issues facing young people with disabilities as they transitioned from school to work. We worked together on something called the Marrakesh Treaty, which affects Braille documents that are transported across international borders. And then as we became friends, we work together on different presidential campaigns and then on all kinds of issues, when I came to AAPD and she began to build her media empire. And I think for people who want to learn more about what Judy was like as a person, they should watch her podcasts, which is available on a variety of platforms. And you can see the way that she engages with people, the questions that she asks. She was an incredible, incredible person.

Jack Rosen:

And finally, I was wondering if you had any positive or lighthearted stories about Judy you’d like to share?

Maria Town:

I do. One of my favorite Judy’s stories, so I have been married now for a little over a year, and my wife’s name is Cheryl, and Judy really loved Cheryl. And when I got engaged, we were really excited, but not everyone in our family was as excited as we were. And prior to getting engaged, a few months before getting engaged, Judy called me and said, “Are you engaged?” And it was so funny because when she called me, only a few days before, I’d actually decided to propose to my wife. And so it was this strange question and I was like, “Judy, no, I’m not engaged. Who have you been talking to? Why are you asking me this?” And she said, “I don’t know, I just felt like you should be engaged.” And so I told her that when I got engaged, I would call her. And she wouldn’t find out from somebody else, she wouldn’t find out on social media. When I got engaged, I would be the one to tell her, I would call her.

So fast-forward in February when I actually did propose to Cheryl, I called Judy and when she answered, I said, “Judy, you know how I said I would call you when I was engaged?” “Come on, [inaudible 00:19:58] show me the ring, tell me everything.” She was just so excited. And I really cherished that because it was just excitement that we really needed at that time, and she was so loving.

Jack Rosen:

Wow. She sounded like such an incredible person, I wish I had the chance to know her. Thank you, Maria. Anything else before we close out?

Maria Town:

So one of the things about Judy is that she pushed people and in a lot of different ways. And she, for example, was always pushing me to be bolder in my advocacy and to really claim my own power. And I wasn’t necessarily, again, ready for all of this at the time, but she still did it. And on a funnier, lighter note, Judy and I attended the wedding of another disability advocate, Ari Ne’eman. And Aria’s Jewish, and Judy asked me to do the hora with her. Now, I have cerebral palsy, my balance is terrible, doing the hora is something that will result in disaster, and potentially bodily harm to me and others. And I was like, “Judy, I don’t know about this. I don’t think it’s a good idea.” And she was like, “Come on, just dance. You can hold onto the back of my chair.” And so that’s what we did, and I walked away unscathed, and grateful to have done the hora with Judy Heumann.

Jack Rosen:

It was so incredible to see all the lives that Judy touched, and it seemed there really was a running theme that she took a real interest in so many of the people she met and was dedicated to leaving the disability rights movement in a better place.

Stephanie Flynt:

Oh my goodness, you’re telling me. Yeah, definitely, you can just tell from all of the stories that have been told today that she served as a friend and a mentor and a colleague. And she wasn’t afraid to tell you how it was and she never seemed to met a stranger. She wanted to help every single one of us in this community become better advocates in whatever way she possibly could. And that is so evident in the stories told today. And yeah, I think we can see why she is considered the Mother of the Disability Rights Movement, she more than earned that title.

Jack Rosen:

100%. And if you want to learn more about Judy’s legacy, there’s a couple of articles we’ll link to in the show notes. Also, you can check out Crip Camp on Netflix of course.

Stephanie Flynt:

Yes, 10/10 recommend, watch it.

Jack Rosen:

Thank you for joining us on today’s episode of the PandA Pod. As always, you can follow us on social media, @NDRNadvocates on Instagram, Twitter, and Facebook. You can also follow us on LinkedIn at the National Disability Rights Network. And finally, you can join us in Phoenix, Arizona, June 5th through the 8th for the 2023 National Disability Rights In-Person Conference. We’ll have a wide variety of sessions, ranging from legal issues to public policy. You can even join me for The A to Zs of Content Creation. You can find more information about the annual conference at our website, www.ndrn.org.

Stephanie Flynt:

Oh, and BTWs, all the cool kids are going to be at the public policy session. So yeah, go ahead and sign up now. Until next time, everybody.

Jack Rosen:

See you.

Raquel Rosa joins us on this one, as we sit down with some of our friends from the Arc of Massachusetts to talk about Operation House Call. Maura Sullivan and Jonathan Gardner explain how the program teaches medical and nursing students about treating patients with I/DD with respect and sensitivity to improve outcomes for all involved. Then med student and future pediatrician Naaz Daneshvar talks about getting her university to adopt Operation House Call as part of their curriculum.

Learn more about Operation House Call at https://www.operationhousecall.com

Full transcript of this month’s episode available at https://www.ndrn.org/resource/panda-pod-is-there-a-doctor-in-the-pod

 

Transcript:

*Intro Music Plays*

Michelle Bishop:

Hi everyone, and welcome to another edition of the Panda Pod, your favorite disability rights podcast. I am Michelle Bishop, NDRM’s Voter Access and Engagement Manager, and one third of your incredible hosting team.

 

Stephanie Flynt:

I’m Stephanie Flint, one of NDRN’s Public Policy Analysts.

 

Michelle Bishop:

And we have another special guest host this month, Raquel Rosa. Shout yourself out to our listeners.

 

Raquel Rosa:

Hi everyone, this is Raquel. I am also at NDRN. I am part of the Rep Payee team, and I am solely transitioning over to the External Relations team. Thanks for having me.

 

Michelle Bishop:

Thanks, Raquel. We’re so excited for you to join. Before we get started with the business of this episode, I have some important business to conduct. I have to make good on a promise I made someone. This is our March 2023 episode, and officially the first episode of me calling out my mom every single episode until she starts listening to our podcast. I think y’all have heard me say before that my mom is our only listener, and I just recently found out despite the fact that I set up a podcast app on her phone, she is not listening to us. So mom, this is your official call-out. You better get in touch with me ASAP or I’m calling you out again next month.

 

Stephanie Flynt:

Okay, so if she doesn’t listen to the podcast, she’s not going to hear you. You might want to text her.

 

Michelle Bishop:

I’m going to keep saying it until the word gets back to her. The four of you are just going to have to listen to this every month until the podcast inevitably crashes and burns.

 

Stephanie Flynt:

You heard it here first. Y’all figure out a way to contact Michelle’s mom so that we don’t have to listen to this PSA every month.

 

Michelle Bishop:

If you’re stuck with Stephanie’s jokes every month, then I can do this, all right?

 

Stephanie Flynt:

Fine.

 

Michelle Bishop:

Sorry. Sorry. Okay, Jack Rose and our trustee Producer, who we forget to introduce every single episode, please take it away. Tell us what’s in the news these days.

 

Jack Rosen:

From Youth Today, a state is being sued for warehousing children with disabilities in foster care. Late last year, Disability Rights North Carolina and the North Carolina chapter of the NAACP filed a class action suit against North Carolina Department of Health and Human Services Secretary Kody Kinsley, seeking to end discrimination regarding children with disabilities who were placed in foster care as wards of the state, and who are then unnecessarily segregated from their home communities.

As a result, these children are often isolated and heavily restrictive, and politically inappropriate institutional placements called “psychiatric residential treatment facilities.” Through their attorneys, the North Carolina lawsuit alleges the children who stand as named plaintiffs, using pseudonyms of course, are receiving heavy cocktails of mind-altering, psychotropic medications while at these facilities.

 

Stephanie Flynt:

I feel like I only have one word, and it’s a question, and that is, why? I know that the foster care system is a broken system, but this is just heartbreaking. I’m honestly at a loss for words.

 

Raquel Rosa:

I was just going to say, this is so gut-wrenching, the trauma upon trauma that these young people are faced with. There is a general perception I think that the child welfare system is benevolent and that these young people are in good hands. Unfortunately, that is incredibly the furthest thing from the truth. A lot of these young people are also receiving Social Security benefits, and those benefits are unfortunately not always used in their best interest, and they’re not always being conserved for when they transition into independent adult life. It’s bad every way you slice it.

 

Michelle Bishop:

Yeah, I’m not sure what else to say about this one. It’s truly terrifying, but it makes me thankful for organizations like the PNAs in our network that are doing incredible work to try to stop things like this from happening to people with disabilities. So, shout out to all of you who are out there protecting people with disabilities every day. I appreciate you so much.

What else do we have in the news, Jack?

 

Jack Rosen:

From the State Journal in West Virginia, home care services shortages and issues placed West Virginians at risk. Advocates for the elderly and people with disabilities in West Virginia are calling for more investment and oversight in home care as workforce shortages and other issues within the industry bring consequences ranging from mere inconvenience to unnecessary institutionalization, and even death. These services can help individuals live independently in their own homes, be involved in their communities, and avoid institutionalization in psychiatric facilities or nursing homes. They also provide a cost savings.

It costs about $250-$300 per day to keep an individual in their home, compared to about $900 a day for that individual to live in an institution. Susan Given, the Executive Director of Disability Rights West Virginia, had this to say, “We’re trying to get people to understand that this is serious. People think this doesn’t affect them, but their parents may be one day away from having a stroke or heart attack that would be debilitating, or a car accident with a child. It’s just something that everyone should be concerned about because you never know when you’re going to be in that situation. No one is insulated from something like this happening to them or a family member.”

 

Michelle Bishop:

Disability Rights of West Virginia, first of all, are fearless, so shout out to them for the advocacy they’re doing here. Do we know y’all, and I’m kind of looking at you Raquel because I feel like you would know about things like this, is this a COVID-related thing? Are there worker shortages in this industry following the pandemic?

 

Raquel Rosa:

Well first, I also want to piggyback on the big shout-out to Disability Rights West Virginia because they are phenomenal. I am just so pleased with them being so bold in pushing for people to be at home, and thrive in their own personal space. Yeah, so to answer your question, Michelle, this has been a pre-existing issue. COVID has made it worse. When it comes to direct supports, and by the way everyone, I spent the first decade plus of my career providing direct supports so it’s something very near and dear to me, there’s more than one issue.

One of them is that it’s not a well-valued career. People unfortunately associate this work with intimate care that is just not considered appealing. It’s not paid well. People are not trained well. Oftentimes, service providers do not offer any kind of professional development or incentives to grow. For some of the people, myself included, who moved beyond that, it’s really up to us to make those steps into another direction, to deepen our advocacy, to deepen our expertise. Otherwise, it’s just unfortunately a cycle of not great recruitment strategies, no good retention strategies, and unfortunately just the de-valuing of people with disabilities.

COVID has obviously made it worse, and part of it is people’s fear of just being in spaces with people who are that much more vulnerable to COVID. Some people are saying, “Hey look, this has made me reassess what’s important to me, and I want to do something more.” People are taking the proverbial bull by the horns and getting that education on their own. They are attempting other career moves that can help people. I think it’s a really big issue. I think we need to get a lot of policy makers on board with enhancing budgets, and really trying to incentivize this workforce because everybody deserves the right to be at home, live at home, thrive at home, and to also go to the policymaking angel.

Having a cost benefit analysis is just chef’s kiss because people ultimately want to see how is this beneficial when it comes to dollars and cents. When you’re talking about at $700 difference between at home support and institutional support, it’s astounding. So not only is the quality of life for someone that much better when they’re at home, the cost benefit is undeniable. So yeah, I think it’s a really big issue for us to tackle, and it’s something near to me. I am happy to be part of the charge.

 

Michelle Bishop:

Well y’all see why we had Raquel on today.

 

Stephanie Flynt:

Beats me.

 

Raquel Rosa:

I hear you snapping those fingers.

 

Stephanie Flynt:

Yes.

 

Michelle Bishop:

Jack, any other news stories for us this month?

 

Jack Rosen:

From a local NBC affiliate in Texas, KXAN, a Texas bill would ban schools from restraining students on the ground. Texas Representative Mary Gonzalez of El Paso, “This session introduced a bill that would ban teachers and other school employees from restraining students on the ground at school, specifically those with disabilities.” “Tragically, those restraints are happening more and more violently to students with disabilities,” disability rights Texas Senior Policy Specialist, Steve Aleman said.

Rep Gonzalez added, “I just think about how our schools exist or do exist for our most vulnerable kids to get the support they need. And when I see this video, it just gives me some red flags and that is why we’re doing this piece of legislation with Disability Rights Texas,” Rep Gonzalez added. The video in question was a school administrator throwing a 14-year-old boy into the wall of a “pull down room” and then restraining him on the ground. So, glad to see that Disability Rights Texas is working with the legislature to make some progress on banning this practice.

 

Stephanie Flynt:

The fact that this is still happening in 2023 is just plain wrong. The fact that this is considered some sort of discipline is quite frankly disgusting. Like Steve was saying, this is something that is happening everywhere. This is something that is happening all over the country, and this is something that doesn’t really get talked about.

 

Michelle Bishop:

Yeah, I don’t understand why anyone’s getting restrained against the ground specifically, especially when we’re talking about a 14-year-old. That’s a child. I do love all the shout-outs to our amazing network today. Disability Rights Texas as well, just do incredible work. Thank you Disability Rights Texas for leading the charge on this one.

 

Raquel Rosa:

Yeah, I could not agree with you all more. Just the egregious nature of presuming that’s okay, that’s child abuse. It is absolutely child abuse. As adults, we collectively need to check ourselves. We are talking about young people who are developmentally different than us, they are generationally different than us. The world is different for them than it is for us in a lot of ways. Then you add disability into the mix, and we’re just going to wrangle kid and put them on the ground? It is nothing short of violence and abuse, and people should be ashamed of themselves.

 

Stephanie Flynt:

Raquel, can you say that louder for the people in the back?

 

Raquel Rosa:

The whole thing?

 

Stephanie Flynt:

The whole thing for the people in the back.

 

Raquel Rosa:

We need to do better. We need to do better. We need to hold one another more accountable. If people really have that much aggression, they can take boxing lessons. Do that with people who consent to physical encounters. Don’t be bringing kids down. It’s not cool.

 

Stephanie Flynt:

I sense Raquel becoming a co-host.

 

Michelle Bishop:

Actually, on that note, let’s get into the main issue for today’s episode. We found out about this really cool program happening in Massachusetts called Operation House Call. We got some folks involved with that project on today to talk about it. Raquel, can you introduce our speakers for us?

 

Raquel Rosa:

Absolutely. First, we’ve got Maura Sullivan. She is a dedicated and passionate leader in advocacy for people with Autism, and intellectual and developmental disabilities. Her expertise is in disability health policy and education. Currently, she’s the Director of Government Affairs for the Arc of Massachusetts, and she’s the Director and Lead Instructor for Operation House Call, the program that teaches medical students best practices in caring for individuals with Autism, and intellectual and developmental disabilities. She teaches at all the major medical schools in Massachusetts, which reaches over 1,000 medical and nursing students every year. Her life’s focus for this work comes from being a mom of two young men with Autism and intellectual disabilities.

Then we’ve got Jonathan Gardner. He is a 20-year-old self advocate, cancer survivor, and decision maker who also happens to have Autism. He has a vision of helping others any way he can. Jonathan is currently employed by the Arc of Massachusetts as an Ambassador for Operation House Call. He is a council member of the Massachusetts DD Council, and he is a Flutie Fellow for the Doug Flutie, Jr. Foundation, where he gets to share his vision of helping other people. Most recently, he was named Co-Chair to the Massachusetts Supportive Decision Making Coalition. In his spare time, he enjoys video games, anime, wrestling, and advocating for himself and other people.

 

Michelle Bishop:

Thank you all so much for joining us today. I was wondering if we could just get started with Maura. Maybe you can tell us a little bit more about Operation House Call, and how this program got started.

 

Maura Sullivan:

Absolutely. Thank you so much for having me. Operation House Call is a really unique program. It teaches medical students and other healthcare professionals really how to provide the best care to patients with Autism or intellectual and developmental disabilities. But we do this from the patient and parent’s perspective. It’s true experiential learning combined with lecture that provides foundational learning, and education, but they really learn through our stories. Our stories highlight important learning objectives. They highlight those pivotal moments we’ve experienced with medical providers throughout our journeys.

The real goal of the program is to really begin to address the health disparities and the access issues that face our community. This is why the Arc of Massachusetts has prioritized this program. We have so much we want to teach and share with future doctors and future healthcare professionals. It has been a slow-growing program, but it’s now been about 10 years here in Massachusetts with the Arc of Massachusetts. We are currently in every medical school, and in a few graduate nursing schools as well. We’re so excited to have this presence. It’s not easy to get time in medical school curriculum, so it’s taken a lot to prove the importance of the program and to really build out our program, which is based on families participating.

In Massachusetts, we have 250 families across the state who participate by opening their doors and their hoes to medical students, and really just giving those students an opportunity to learn what life is like living with a disability. They learn directly from individuals and family members about the challenges that they’ve had in the medical community, some of the extraordinary things they’ve been through. They also learn just day to day life and the usual challenges they have for education, and out in the community. We feel like families do such a wonderful job showing medical students their resilience and their strength in the face of some very complex medical conditions, and those combined with intellectual or developmental disabilities can really be really challenging and complex for families.

We’re really excited. We see students coming away from this program just enlightened. They have incredible amounts of respect for the families and for the individuals, and they really have a willingness to learn more. I think that’s what’s great. It kind of breaks any of the fear they may have had about treating patients with Autism or I/DD, and they just grow confidence. That’s one of the main goals, is we want more providers willing to treat patients. Especially when we get to adulthood, we see that it’s really difficult to find primary care, to find specialty care. To have doctors who you may encounter in the emergency room, or as covering doctors really understand the needs of patients with Autism and I/DD, and their families.

Some of the things that I think are so important about our program are the learning objectives that we cover. We do that again through our personal stories, but we talk so much about communication and the importance of communication, whether it’s learning to communicate with someone whose non-speaking and uses gestures, and sounds, and play as part of their communication, or really partnering with family members, all the way to learning how to give patients enough processing time when they ask questions so they can really be engaged and participate in their own healthcare.

One of the great parts of the program is during our lectures in the medical schools, we bring in an individual who has Autism or an I/DD, intellectual developmental disability, and they serve as a co-teacher. You’ll hear from Jonathan later about this, but they share their experiences directly with the medical students, and then open up class to a question and answer session that is always incredibly moving and impactful as they learn more about this individual and their journey, and their needs. Then lastly, I would say they come away from class with a lot of resources. They have tips that we’ve put together about accommodations, and these tips come in from our 250 families.

And, the students write about their experience, which is also a whole other aspect of learning, is just reflecting and beginning to think about their biases that may affect treatment and assessment of patients, and through that essay they process with a parent instructor. A parent instructor will then provide feedback and answer any questions, and allow those students to explore additional resources. I feel like it’s a great model. It’s really remarkable how the students are transformed from meeting families and individuals, and we’re very luck to have the support of so many families and the support of the Arc of Massachusetts.

 

Raquel Rosa:

Jonathan, I have a couple of questions for you. The first part is, what has it meant to you to participate in this program?

 

Jonathan Gardner:

I feel very honored and validated to be an Ambassador for Operation House Call. My vision has always been to help others in any way I can, and this is fulfilling my vision in so many ways. I get to share my story and help others share theirs. All together, we can make such an impactful positive change in the way everyone should receive their healthcare. Operation House Call gives me a chance to teach up and coming doctors and nurses from my own experiences, which were some good and some bad, so that the bad experiences that I went through won’t happen to others.

Sharing my story gives me a chance to help the students understand how to communicate with someone who happens to have a disability, and to look past that disability so that everyone is able to get the best possible care. I believe that all behavior is a form of someone trying to communicate. The students get the chance to ask questions when I teach, and this is a way for us to work together to make sure everyone is able to get the possible care possible. The students want to learn how to treat everyone equally, and this gives us all a chance to work together to make sure everyone is able to get the possible care.

Operation House Call has helped me with my own advocacy because I have always been shy. I was traumatized at a very young age. It has helped me become the version of myself that I knew I could always be. I have always wanted to help others to the best of my abilities, and now I get to do just that. I am now a strong advocate not just for myself, but for others. My voice is validated and respected when it used to not be. This is so empowering to me. I can make others feel more comfortable doing their own co-teaching and taking care of their patients. This all fits with my vision of helping others any way I can.

As an ambassador, I get to help mentor the co-teachers and provide strategies to cope through the classes, and there is no better way to learn than from someone with a personal story. Operation House Call is all about families and individuals with disabilities teaching our doctors. They are gaining a very personal education from the heart when the come to our classes. To me, nothing more is meaningful.

 

Raquel Rosa:

Thank you. You actually answered what I was going to ask earlier, but I came up with something kind of bridging the two together, which is how has Operation House Call given you techniques to advocate for yourself? What advice would you have for other people with disabilities, and how they can advocate for themselves?

 

Jonathan Gardner:

That’s a very interesting question. I would say for how it helped me become more of an advocate, I guess the supports and the knowledge of the people that are around me. For example, my mom, whom is one my main teachers and one of my main mentors, she is wonderful and she’s taught me so much about this advocacy world. I’ve never been so grateful in my entire life. Then there’s Maura, who you just heard from a little bit ago, who is one of my mom’s mentors, and I’m glad to say she’s one of mine as well, because honestly she’s done a great job in supporting me and others through this wonderful program.

For others, I guess my suggestions would be to don’t feel like you can’t rely on supports to help you with advocating. I guess my suggestion is, don’t feel afraid to ask for supports and do what makes you feel comfortable in the moment.

 

Jack Rosen:

I was wondering, in light of the success of Operation House Call, how can PNAs and disability organizations get something like this going in other states?

 

Maura Sullivan:

Like I mentioned, it’s really been a slow growth for Operation House Call here in Massachusetts, but I think the good news is there’s really national recognition of the health equity issues for people with I/DD and Autism right now. I believe more and more states are going to want their medical students and their doctors, and other healthcare professionals, better trained and better equipped. I think there’s definitely a movement to have more trainings available, more continuing emergency department, more trainings for emergency rooms.

But for us, the best way we built out our program was to connect with a champion at that medical school or at our local hospital, or even the local clinics that have more expertise in Autism or I/DD, like our Down’s Syndrome clinics here at Mass General Hospital. We found those doctors who are established champions in the field and in the community, and they were able to help us get a foot in the door at the medical schools. Offering a pilot program was really helpful. We were able to do the program with a small number of students and then get their feedback.

We have a great story of recently one of our medical students at UMASS Medical School, she really wanted this program. She advocated for it herself, actually bringing it to her administration saying she had Googled and found out that medical schools don’t have training programs in Autism or I/DD, and that she actually had found Operation House Call and was shocked to see that her medical school is the only one in Massachusetts that hadn’t implemented it yet. They really listened to her and they allowed us to do a pilot, and they brought us right onboard. So, it was wonderful.

Other programs have been longstanding, and each year we make sure that we’re constantly getting student feedback because the reality is they don’t have a lot of time in their curriculum. We really do need to prove how important this is for medical students, so we rely on the students’ feedback and they tell us what an incredible experience and what an important and impactful one it’s been during their medical school rotation or clerkships. What’s nice is we can always also use their reflection essays internally here to show really the power that these families are having to educate and to inspire these doctors.

I would also say that there’s been some studies and some research done on sort of the attitudes of doctors when it comes to treating patients with disabilities. I think the more research and studies that are done to show that not all doctors are willing to treat patients with disabilities, and some will go to a pretty extreme length to not treat patients with disabilities. We really need to break through where we can with that. Our program is really focused on those attitudinal barriers, but there’s much more to do.

We need to focus nationally on better reimbursement for these providers because they really do need to have longer appointments sometimes, not all the time. But it’s helpful. We talk about communication and processing, and building bonds with their patients, and establishing that level of trust and comfort. Sometimes, those things take a little bit longer. We’d love to see some… There is some federal legislation that would help in this way, but we would love to see more efforts put into reimbursement as well as mandating training across all medical schools.

 

Michelle Bishop:

Maura and everyone, thank you so much for joining us today. This has been such a fascinating conversation, and I know that a lot of our listeners understand exactly what you’re talking about in terms of medical professionals who aren’t willing to serve people with disabilities, or if they do, they don’t know how to respectfully interact with people with disabilities, or they don’t listen to us when we tell them what our symptoms are and what our concerns are. I know that this is a widespread problem, and a program like this would probably benefit people with disabilities everywhere. So, we appreciate you so much coming on and just telling us more about this. Any resources you have for us, we’d love to put in the show notes so that our organizations in other states can maybe pick up the torch and try to get something like this going in their states as well.

Thank you so much for joining us today.

 

Maura Sullivan:

We can absolutely share our resources. I would only add to that, one of the great things that families are able to share is their positive and wonderful experiences they have with their doctors. This goes a long way too. We talk about the doctors who have really worked at bonding, who have made all the accommodations possible for our loved ones, and the ones that think outside the box and go that extra mile, and how important modeling that kind of person-first behavior, and how far that can go because if one doctor is a champion and they can reach other doctors and healthcare professionals, we’ll see a great effect.

It’s about making doctors aware of the problems that are out there, and the disparities, and honestly really also staying current with the issues and making sure that we hit on things like intersectionality and the intersection of race and disability, and the disparities that come from that as well. Even COVID taught us so much. So, we’re doing our best to stay on top of all the issues and reach as many doctors and nurses as we can.

 

Michelle Bishop:

Thank you all so much for your hard work and your advocacy, and thanks for joining today.

 

Maura Sullivan:

Thank you so much.

 

Jonathan Gardner:

Thank you so much for having us.

 

Stephanie Flynt:

Okay, awesome. So that was a super exciting interview with hearing about the instructional aspect of Operation House Call, as well as the self advocate aspect. One of the things that we really want to give you is just a very well-rounded perspective on Operation House Call. We do have a medical student who actually was sharing with me earlier that she participated in a pilot program prior to Operation House Call, becoming I guess you could say more of a normal elective. I can’t think of the right words this morning because coffee is a thing and it hasn’t totally kicked in yet. But all that to say, super excited to hear her story.

 

Naaz Daneshvar:

My name is Nas. I am currently a third year student at UMASS Gen Medical School. As you said, I participated in a pilot program of Operation House Call in a more optional opt-in format, and then helped bring Operation House Call into the core curriculum at UMASS so that all students are able to participate in it. I grew up with an older cousin with an intellectual and developmental disability, and he was definitely a guiding force in my reasons for going into medicine. Though I changed my mind a million times about what I might want to go into, I’ve stayed true to that driving reason for pursing medicine in the first place.

So, I knew my first year that I wanted to find some way to still be an advocate in medical school. As you said, a lot of providers and people in the medical field don’t necessarily mean to overlook that patient population, but medical curriculums are often incredibly standardized and it’s hard to incorporate new educational material into them. I thought I would start on a small basis, and UMASS gives us the opportunity to lead student-driven electives. I have a particular interest in pediatrics, so I initially led an elective on caring for pediatric patients with disabilities and complex medical needs.

I did a little bit of research and discovered Operation House Call, which as you heard previously in this episode, it’s basically part core curriculum/part interactions with an individual and their family members with some sort of disability. I think that I can speak for most medical students when I say that the best way to learn how to care for patients with complex needs, is just to hear their stories, hear what day-to-day life is like for them, hear what obstacles they face, and hear about both difficulties and successes in the medical field.

That’s exactly what Operation House Call does. I participated in the pilot program through that elective, but now every first year has this Operation House Call program integrated into their first year curriculum. It starts with Maura coming in and giving some tips and tricks on how to interact with patients that might have sensory issues, or any sort of challenges or obstacles that some of these patients may face in medical settings. She shares her story, and shares some perspectives she has from being a part of the Arc of Massachusetts for so many years.

Then students get the chance to break up into smaller groups and meet with individuals with disabilities and their families, and just again, hear their stories, ask questions in a small group setting. A lot of times it can be difficult when you’re given a sort of standard curriculum in a 300 person class. You don’t want to embarrass yourself or kind of expose yourself for not knowing much about this patient population in such a large setting, so I really do think that breaking these conversations down into groups of five or six gives medical students the chance to ask any questions that are on their mind.

I’ve found that through talking with more and through participating in the program families can be more honest. Some medical students have never had the chance to really interact with anyone with any sort of disability. So, it kind of just breaks the ice and I think allows medical students to feel more comfortable going forward. There are so many individuals in the United States that have disabilities that are obvious or not so obvious. Just breaking the ice and giving medical students that initial interaction so that when these patients circle through their practices they feel at least a little more comfortable accepting these patients and billing willing to see them, I think is the ultimate goal of Operation House Call.

I’m glad that more and more physicians that are trained at UMASS will feel comfortable with these interactions, and feel comfortable accepting new patients regardless of the disabilities they face. I think the home visit is the most valuable part, and I think a major part of that stems from the fact that you’re not only discussing a patient’s medical conditions, you’re really discussing what day-to-day life looks like for them, the social challenges they face. I think that’s the most important part to keep in mind when interacting with these patients, understanding that it goes beyond just a medical condition or diagnosis. It really does impact day-to-day life, and getting to learn a bit more about what day-to-day life looks like for them does ultimately impact the care that medical providers should be providing.

I think that’s both the best and honestly the most tricky part, because yeah as a physician or a healthcare provider, your responsibility is to aid patients with their medical conditions or medical problems they’re facing. But a lot of times with these patients, there’s a lot of social issues that come up too, whether that be navigating resources that should be provided to them via the government, advocating for them in job settings or school settings depending on the patient’s age, securing transportation to and from doctors’ appointments. There’s a million social things that go into caring for this population.

And so, a healthcare provider’s job goes beyond just that basic medical care. It broadens into just caring for this individual as a whole, and helping to alleviate the day-to-day stressors they face as best we can. I think that’s a major challenge, and it’s not quite clear what the best solution for that is. I definitely think that some specialties have a little bit more time to navigate those kinds of social complexities and to make more change in just the day-to-day life of their patients. I think it’s at least a good thing to get physicians to start thinking about and brainstorming ways that they can really impact the day-to-day life of these patients and make them easier.

 

Michelle Bishop:

Yes. No, speak that truth. I think I can speak for all of our co-hosts when I say we love an OG. We love a trendsetter. So, thank you for being an early adopter of the curriculum through Operation House Call. I think it’s such a cool program. It’s going to make such an impact on the medical profession and for people with disabilities. I’m just going to say it, more doctors like Nas, that’s what we want to see. Also, more self advocates like Jonathan, while we’re on the topic. So, thank you Nas for sharing your story, and thank you to all of our amazing guests today. I hope all of our listeners are going to go forth and create something like this in their state.

 

Naaz Daneshvar:

Absolutely. Thank you guys so much, and thank you guys for sharing our story. I really do hope that more and more medical schools start to incorporate this into their curriculum.

 

Michelle Bishop:

Oh my gosh, quite the episode today. People were shouted out. People were called out. Our guests today were spitting that truth. Raquel was on fire. Podcast@NDRN.org, if you want Raquel host with us again. Now comes the time in every episode that we all fear. Stephanie, do you have a joke?

 

Stephanie Flynt:

Of course I do, although you did have a really nice pun there, Michelle. I’ll let people figure that one out for themselves. Here’s the joke for this episode. What do you call a dog that knows everything? Any guesses?

 

Michelle Bishop:

I got nothing.

 

Stephanie Flynt:

A Labra-Google.

 

Michelle Bishop:

Oh.

 

Stephanie Flynt:

By the way, my partner says that I should have given her credit for the last joke, so I’m giving her credit for this joke.

 

Michelle Bishop:

That one, last month’s joke, was better. Oh. It all makes sense now.

 

Stephanie Flynt:

Wow, Michelle just said that she liked my jokes. You’ve heard it here, y’all. You heard it here.

 

Michelle Bishop:

I think I said I liked your partner’s joke, but…

 

Stephanie Flynt:

Rewind. Rewind.

 

Michelle Bishop:

And that concludes the Joke of the Month. You could always hit the podcast at NDRN.org if you have topics you’d like us to create an episode around. Do you have a spotlight story you want to share? If you have a joke for Stephanie, or you want to vote to get rid of the Joke of the Month, all of those are acceptable, you can always email us if you don’t like the jokes.

 

Stephanie Flynt:

Fake news.

 

Michelle Bishop:

Jack, how can they follow us on social media?

 

Jack Rosen:

You can follow us on Twitter, LinkedIn, Facebook, Instagram. We’re @NDRNAdvocates on most of them. Yeah, follow us.

 

Michelle Bishop:

I think that’s a wrap y’all. Who’s got final words of wisdom before Jack puts the outro music on us?

*Outro Music Plays*

 

Guest host Renaldo Fowler joins us this episode, as we talk with Keri Gray, founder of National Alliance of Melanin Disabled Advocates, about her activism and Black Disabled Lives Matter. Then, we turn the focus to Renaldo to talk about the African American Conference on Disabilities.

Links:

Learn more about Keri and her advocacy – https://withkeri.com

African American Conference on Disabilities – https://www.azdisabilitylaw.org/african-american-conference-on-disabilities/

Center for American Progress report on race, disability and policing – https://www.americanprogress.org/article/understanding-policing-black-disabled-bodies/ 

We Can’t Breathe: The Deaf & Disabled Margin of Police Brutality Project – https://ncil.org/resources/we-cant-breathe-the-deaf-disabled-margin-of-police-brutality-project/

 

Transcript:

Michelle Bishop:

Hi, everyone. Welcome back to the PandA Pod. Thank you for joining us today. We’re so excited that all of our listeners are here with us today. I am one of your hosts, Michelle Bishop, the Voter Access and Engagement Manager at the National Disability Rights Network.

Stephanie Flynt:

And I’m Stephanie Flynt, one of your hosts also, Public Policy Analyst with the National Disability Rights Network, and I just want to thank Jack for continuing the PandA Pod despite the last episode that we had.

Michelle Bishop:

And we also have with us, of course, our dedicated producer, Jack Rosen, and again, a special guest host this month. Renaldo, please introduce yourself to the people.

Renaldo Fowler:

Hi. Thank you for inviting me. Hi, my name is Renaldo Fowler. I’m a Senior Staff Advocate with the Arizona Center for Disability Law, which is Arizona’s Protection and Advocacy.

Michelle Bishop:

Thanks, Renaldo. We’re so excited to have you with us. Before we jump into today’s episode, Jack, talk to us. Do we have anything exciting going on in the news, anything from the network?

Jack Rosen:

Yes, Michelle. From the Daily Herald in Utah, their voice, Disability Advocacy Day helps people speak for themselves. Each year a group of disability organizations that include the Utah P&A, the Disability Law Center, the Utah Developmental Disabilities Council, the Utah Parent Center, and Utah Statewide Independent Living Council and USU Institute for Disability Research Policy and Practice sponsor Disability Advocacy Day. This is a day where individuals with disabilities, caregivers, families and providers can go to the Capitol Rotunda and network with agencies to learn about disability topics that will be addressed in the upcoming legislative session.

Stephanie Flynt:

And this is so important not just on the federal level, but like this article demonstrates, it’s so important on the state level. Considering that one in four Americans have disabilities. Of course, different policies do affect us, but also two, it helps us grow as disabled people. It helps us learn self-advocacy skills. It helps us learn how to advocate for ourselves and advocate for others alongside us. So there are so many positives that I cannot express. I’m clearly a huge proponent of advocacy being one of public policy analysts here at NDRN, but I’m of course a huge proponent of self-advocacy. I really do think that that self advocacy really and truly is where it starts, and it really is the heart of advocacy.

Michelle Bishop:

Stephanie, I mean, you do a lot of our public policy work and you do our public policy around voting. I get a little bit of a chance to do some of my own Hill work with Congress, chopping it up about voter access, and I always feel like there’s a big difference between talking to one of us as one of the talking heads for NDRN about an issue versus hearing from actual just regular people with disabilities telling you about how policies impact their lives. I feel like that’s something really different for legislators. I feel like days like this are really important.

Stephanie Flynt:

Yes, absolutely. And thank you so much for bringing that up. So one thing that I tell people a lot of the times when I’ve gone to The Hill with folks, they don’t want to hear us talk. They get to hear us talk all the time. They want to hear from constituents, they want to hear from people that are affected by this, that they represent. I don’t care what level this is. On the federal level, they want to hear from people that they represent. On the state level, they want to hear from people that they represent. On the local level, they want to hear from people that they represent about what’s going on in their communities, and quite frankly, a lot of people have this misconception that legislative officials are more likely to listen to us, and that could not be farther from the truth. They’re going to listen to the people who are actually affected by this. Of course, they may listen to us regarding some of the technical pieces, but really and truly your advocacy matters more than ours in some ways.

Renaldo Fowler:

When I read this article, for years and years working at the P&A I’ve worked a lot around special education, and it’s really interesting when I read this article about self-advocacy skills, that’s one of the issues that I brought up doing my IEP meetings. Often when I would work with students in high school, they would talk about transition planning, employment opportunities, and I was like, “Hey, there’s a piece missing. What about working on advocacy skills? I mean, you got to have advocacy skills if you’re going to go to a job, if you’re going to work on independent living skills.”

So one of the areas that I think is so important that we don’t think about is we think those skills are automatic. A lot of those advocacy skills need to be taught by parents, one of the things that article talked about working with parents and caregivers, but I think one of the crucial parts of this whole self-advocacy thing is working with them when they’re young students in special education because so much of special education parents are making decisions and sometimes I think often there we’re not listening to the actual student and the student wishes, even though they talk about it. So I think that’s one of the areas that really taking a look at building self-advocacy skills need to start really around schools and teaching those skills. Just like you teach math, you teach reading, I think advocacy skills we can really need to be worked on in the school setting. So that’s kind of my take in terms of self-advocacy skills, of building those skills.

Michelle Bishop:

Yes, so important. I agree completely. So, so important. So Jack, what else do we have going on in the network these days?

Jack Rosen:

From E&E News, majority of disabled people never go home after disasters. According to data of released by the Census Bureau recently, people with disabilities are far more likely than anyone else to face major hardship, including displacement from their homes due to a major disaster. For example, 70% of deaf people who were evacuated reported living in unsanitary conditions a month after a disaster. More than 74% of evacuees who were unable to walk reported experiencing a lack of food one month after a disaster. Only 7% of evacuees who were not deaf or hard of hearing were in unsanitary conditions. Our former colleague, Justice Shorter, who was the disaster advisor for the National Disability Rights Network, said, “This is completely in alignment with things we’ve noted over several years now regarding individuals with disabilities and disasters. This should encourage folks to understand that all of the stories, testimony, commentary, that people with disabilities have been giving for years are credible, believable, and it shouldn’t take this to make those stories valid.”

Michelle Bishop:

So not to take away from our amazing colleague, Justice Shorter, who knows more about this than I ever will, but I have done some work that touches on emergency preparedness, and I have to say this is both true and terrifying. I think we take for granted that non-disabled people when they’re evacuated during emergencies, go to stay in shelters temporarily and then eventually get to go home.

People with disabilities are often actually put into settings like nursing homes, which on the surface I think people think make sense because they’re set up to accommodate their care needs in a way that a temporary shelter probably isn’t, but I think a lot of people listening to this podcast know that once you go into a nursing home system, it’s incredibly difficult to get out. And a lot of people are put into long-term care facilities during a disaster who have a home in the community and they never get out, and they never go back to their homes. I just can’t imagine that just one natural disaster happens and your home still exists and it’s there in your life and all your stuff are there, and you just somehow never get to go home, and the fact that this happens to so many people with disabilities and we just don’t ever talk about it, to me, is truly terrifying.

Renaldo Fowler:

One of the things with this article is that when you’re removed from your community, there’s a natural support system that’s there, including their church, their family members, and so when those folks don’t have an opportunity to go back home, a lot of those family members, those communities that they are familiar with, they feel strong with, and also when you’re in that different setting, your dietary needs may not be met at the nursing home. So there’s so many impact that not having someone go back home after a disaster. I mean, just the stress itself from the disaster, now your disassociation from your community and your family and maybe some of your religious practice. So it’s why it’s really important that people go back to their communities with the supports that they need.

Stephanie Flynt:

Yeah, and just to kind of piggyback a little bit off of that, I know at least for me as a disabled person, and obviously this isn’t like an emergency disaster situation or a situation where I’ve been in a nursing home, but I think that for a lot of individuals who aren’t disabled, their first assumption when it comes to disabled people is, “Oh, don’t you have a little friend who can come get you? Oh, don’t you have family members who can come and get you?”

And I think a lot of people think that disabled people just constantly have all of these family supports and friends supports around them, and while some of us do… I mean, for starters, that’s not always the case for everyone, but also too is that those people may not be able to afford to come and get those individuals. So really and truly more needs to be done rather than just assuming that somebody has somebody to bring them home or get them home, like something needs to be done on a state level, or who knows, maybe even a federal level if possible, especially when it comes to these types of disasters in order to get these folks home so that they’re not stranded, for lack of a better word.

Michelle Bishop:

Yeah, I think that it’s one thing if a natural disaster that’s beyond our control is the reason that you lose everything, but if we just don’t bother to set up the system for people with disabilities shouldn’t be the reason that you lose everything, and that’s what really strikes me about this issue. Jack, give us one more story. Please do we have some good news?

Jack Rosen:

We do have some good news. Advocates cheer as Ohio erases the R word in state law. After two years of advocacy from Ohioans with disabilities and dozens of disability aging and victim advocacy organizations, including our friends at the Ohio P&A, Governor DeWine has signed the Mental Health and Disability Terminology Act. The Act changes harmful and derogatory language about people with disabilities that has been written into the Ohio Revised Code. The effort to make these important changes began in January 2021 when 26 organizations sent a letter to all members of the Ohio legislature asking them to take action.

Stephanie Flynt:

Okay, this makes my heart so freaking happy, y’all don’t even know. I’m one of those people, and I know I’m not alone in this, but when I hear somebody say the actual R word, I physically cringe. It literally makes me nauseous, and there’s just a lot of really bad stigma behind that word and a lot of low expectations that are associated with that word. So I applaud Disability Rights Ohio for their work, I applaud the state of Ohio for enacting this legislation and that it is the law of the land over there, and I, for one, encourage other states to follow suit. That’s just amazing.

Michelle Bishop:

Yes. If you saw some of the language that traditionally is in Ohio law, it’s got the R word, but also has idiot, deaf and dumb, lunatics, mental defective, crippled, derangement, and handicapped. Just truly horrifically. I can’t even get on Ohio’s case for this because there are a lot of states that have equally horrific language in their state laws. A lot of which I get are old, but it’s never too late, as we see from Ohio, to change it and to put better language into our laws. Language and naming and labels are really powerful and they send a message to, and then they impact the people that they’re about. So props to Ohio and Disability Rights Ohio for their work on this. What an important change.

Renaldo Fowler:

I agree with you very strongly, Michelle. This is very important. Names do have an impact, and names do have a meaning.

Michelle Bishop:

Well, I think that’s a perfect transition into our topic today. Speaking of names and labels, so many that we use, like criminal and thug, are used to divide, to blame and to justify harm done to people of color, and in recognition of the fact that this is Black History Month, we wanted to confront that and center today’s episode on racial justice, particularly in the disabled community. So we’ll be talking about the intersection of race, disability, policing in America and the Black Disabled Lives Matter movement, a sister movement to Black Lives Matter.

So with that, we’re pleased to introduce you to Keri Gray. Keri is a cancer survivor, entrepreneur, speaker and facilitator. She is the CEO of the Keri Gray Consulting Group where they strive to create professional communities of understanding through disability and racial justice education. She’s also founder of the National Alliance of Melanin Disabled Advocates, which creates space for disabled leaders of color and BIPOC allies to gather, learn, and connect and grow around racial and disability justice. Through her various roles, Keri has recruited approximately 4,000 professionals for over 100 organizations and Fortune 500 companies. She has also designed and managed programs for over 1000 professionals that has helped participants secure competitive employment, identifying transferable skills, build an influential network, and gain notable opportunities. Keri’s work has been featured in Teen Vogue, the New York Times, People Magazine, Time Magazine, PBS News Hour, a personal favorite of mine, and the Diet Coke Campaign hashtag Unlabeled, but we want to talk with Keri today about her work with Black Disabled Lives Matter.

Stephanie Flynt:

Yes, and Keri, thank you so much for taking the time to join us to talk about this very, very important work that you do with Black Disabled Lives Matter. I would love for you to share with our listeners a little bit more about what Black Disabled Lives Matter is and also how it relates to the larger Black Lives Matter movement. I know a lot of us are familiar with the Black Lives Matter movement, but a lot of us might not be as familiar with Black Disabled Lives Matter. So I’d love for you to give us a little bit of background to start.

Keri Gray:

Absolutely. Well, good afternoon to everybody. I’m excited to be here and chat with you today. Thanks for having me. Black Disabled Lives Matter. What I love about it is that the Black Lives Matter movement was founded on an intersectional philosophy, so that means that essentially the folks who came together and said, “We are going to be a part of a larger effort to advocate for Black people,” they made an intentional decision to recognize the diversity of Blackness. And so from the very beginning of the movement, it started as a way where we said, “We are going to talk about, advocate and organize around a wide variety of issues.” So Black Disabled Lives Matter is a part of the entire body, the ecosystem of the Black Lives Matter movement.

One of the biggest ways that I would like to describe the movement is to just share briefly about our experiences together in 2020. I know it’s a rough time to reflect on, just so much, and we went over it, but it’s important. It’s important that we never forget the name George Floyd, the names Breonna Taylor, the countless people who have been murdered by our policing system and just treated in incredibly violent ways. And so in the year of 2020, there was just a historic uprising that occurred where Black people and allies across the country were organizing protests, were getting movements together, were claiming power essentially. And so on June 6th 2020, myself and a incredible, amazing woman named Justice Shorter, two Black disabled women based in the DC area said, “We want to organize our people. We see Black folks, we see everybody coming together to talk about the issues, to push for legislative change, all of these different things. We want to create a space where disabled folks can be a part of this.”

And if you remember, that was incredibly important because in 2020 we were dealing with the aftermaths of George Floyd, all of the things that were occurring, but we were also in the midst of a pandemic, a space in a time where disabled people… It could be nerve-racking to go outside and just… It was a scary time, if you remember. Us thinking about, “Are we going to catch COVID? Are we going to be left vulnerable to the things that are going around?” And so even in the midst of that, the movement of Black Lives Matter was so strong that our community said, “There are some things that you got to be willing to get involved in to make sure progression happens.” So how do we do that in a safe and accessible way? So we organized close to 100 people, Washington, D.C., Black disabled folks, allies, all sorts of people came together, and we marched to the White House and participated in all of the organizing that was going on that day.

And that is an example of what Black Disabled Lives looked like because we wanted to ensure that we had medics out there, we had interpreters out there, we had lawyers, journalists, a comms crew, we had waters, snacks. We had so many people who came together that said, “What do we need to do to ensure that we’re talking about Black people, we’re talking about Black trans life, we’re talking about disabled lives, we’re using ASL, we’re using English?” All of these different things to ensure that our movement is intersectional. So when you talk about the Black Disabled Lives Matter movement, it is part of the body of the Black Lives Matter movement and an opportunity for us to raise awareness and participate in the overall picture of advancing Black people.

Renaldo Fowler:

Can we talk for a moment about the intersection of race and disability, and how policing has habitually harmed and impacted people of color with disabilities?

Keri Gray:

Absolutely. There was a study done by the Center for American Progress, and in that study it found a, quote, 50% of people killed by law enforcement are disabled, and more than half of disabled African Americans have been arrested by the time they turn 28, double the risk in comparison to their white disabled counterparts. So there’s a lot of discussion. If you’re interested in the movement and you’re interested in Black Disabled Lives matter, policing has always been a core component to that, and recognizing a system around our policing in the United States that has been incredibly ineffective, and so when I mentioned this study that was put together by the Center for American Progress, I highly encourage folks to look up the reports that have been written about this.

This was written by a woman named Vilissa Thompson, just incredible research, and it’s showing the deaths of what our community is experiencing it. It’s showing the amount of violence. It’s showing something that should not in any case be considered the norm, but we’re looking at violence, we’re looking at circumstances and situations where a particular group is being treated and overpoliced, Black disabled people. So when we think about what’s happening at the intersection of race and disabilities, a resource that I want to encourage folks to look at is a project that I was able to create in collaboration with a guy named Dustin Gibson, and it’s a project called the We Can’t Breathe Project. You can look it up online. It is called the We Can’t Breathe: Deaf & Disabled Margin of Police Brutality, and essentially what you will find is a toolkit that yourself or yourself and some of your colleagues, your comrades, whoever you get down with in this movement, and you’re able to check out this toolkit and it walks you through understanding what police brutality is.

You end up watching an educational video. And I will give a couple trigger. Again, we’re talking about police brutality, we’re talking about the violence that people are quite literally experiencing on their bodies and the aftermath of what can happen in terms of ending up with PTSD from these types of situations. So it’s a little heavy, so prepare your heart, prepare your spirit for it, but at the same time, it is a useful tool that I encourage to walk through and be able to really understand what’s happening and how you can articulate this experience to others. So when you check out this toolkit, there’s a video that you can watch that takes you through the narrative of five disabled people who also have other intersectional identities. So naming the fact that a part of the reason that our community is experiencing police brutality is because they are disabled and Black, is because they’re disabled and queer, because they’re disabled and a woman, and these things, our identities, come together and for whatever reason invoke a reason for folks to think that they can take advantage of you.

Now, I don’t want to get too deep into that. I ain’t trying to preach nothing, but what I am saying is that you watch this video and it helps you understand what’s happening within the community, helps you understand how it happens because of the intersection of disability and other identities that are going along, and it gives you language, it gives you tools, and it helps you start to be able to see what is our community response to this. How do we be a part of the solution rather just saying, “Oh, that sucks.” We don’t want that type of response. That’s not the movement. The movement calls for us to come together and organize and advocate and be a part of the process. So I want to encourage people to check out that resource, the We Can’t Breath Project: Deaf & Disabled Margin of Police Brutality, and to really get a further way of navigating this conversation.

Renaldo Fowler:

Thank you. Thank you, Keri. One of the things I think is really interesting, Keri, I look at the definition. One of the things I wanted to do was look at the definition of policing, and that was just an interesting concept that I’ve never looked at. What does a word policing mean? So I looked up a definition and it says, “An activity carried out by police officers in order to preserve law and order,” and there’s also a subsection that says, “An action of a person or group in authority in order to ensure fairness and legality in an area of public life.” I think that’s real interesting as you gave that discussion about law enforcement. So we’ll talk a bit more later on about law enforcement today. So I want to move to another topic, is to talk about the disability community is a large and diverse community. How does privilege play a role in the community and in terms of disability and policing?

Keri Gray:

Yes. So privilege. Privilege is important to wrestle with, to acknowledge. Privilege being a thing that if you ignore it, it perpetuates cycles. So a quote that I want to give about privilege theory argues that each individual is embedded in a matrix of categories and context and will be in some ways privileged and in other ways disadvantaged. What I like about this definition is it recognizes that the human experience is complex and it recognizes that in some ways where having privilege means that you have an advantage, and because of our complexity, you can probably also understand what it means to be disadvantaged. People, I think, wrestle with it a bit, but understand that concept. In some ways, I’m good, I’m okay, and in some ways I have a disadvantage. I think there are things that able-bodied folks, in particular, able-bodied people don’t have to think about, i.e. privilege. And so when we’re having this conversation, does privilege play a role in all of this? Definitely.

There’s a couple of areas that stand out. The first one being accessibility. So privilege means that when you go out and about and just enjoy your day, you don’t typically have to think about the infrastructure of places, the tools and the resources of showing up to work every day or whatever the case may be, and will it be accessible to you, and so that has largely been an issue within our community of still having to fight, advocate, navigate is accessibility even a part of the equation? Will I have access to a sign language interpreter to be able to talk to the police? Will I have access to even be able to get into this police car that you’re trying to do? These are literally intangibly still issues that are creating a barrier and conflicts between our communities. Pain management is a privilege. Having to appear able-bodied.

One of the things about the disability community is that our bodies can just start to react beyond our control things. We will start moving, we will start twitching. It is the disabled experience. And what I love about being a part of the disabled community and the movement is that we understand those kind of complexities and know how to just go with the flow because people are people, but when you have a militarized police force, they start to immediately put expectations on how your body should behave, and so if a police officer tells you, “Stop moving,” but you have the type of body that will switch whatever the case may be after he has given you an order, there’s going to be a problem that escalates.

And I’m not mentioning these hypothetically, but again, when you document the history and you see what’s happening, you’re seeing that privilege plays a part in the relationships, the communication, the arrest process, all of these different things. I think of a particular name, Natasha McKenna, a Black woman with mental health disabilities who was institutionalized in Fairfax, Virginia, not too far outside of the DC area, and she just an amazing… If you love Black people, I tell you, she’s beautiful. She’s amazing. And we watch her be institutionalized in a video, and she’s naked and she’s handcuffed by the police and they are, quote, unquote, attempting to transfer for her from this institution to another one. And we watch over the course of not long in this video that she dies in the process naked and handcuffed, and they still can’t do what they supposedly need to do. They still end up killing her.

And I named this, I named this because I believe in Black rage. I believe in the power of being able to say, “That ain’t right and I’m going to do what needs to be done so that there’s real change in our communities and in our systems that are failing us and our people.” So privilege is powerful. I don’t want to make people feel bad for being who they are. You can’t always help it. That’s not the point of, I think, this discussion that we’re having today. I think the point is being able to identify the disparities that are happening, the issues that are occurring and being a part of the solution, and so part of that is definitely identifying and changing our circumstances around privilege.

Michelle Bishop:

Keri, I’m glad Renaldo brought up policing and that you talked a little bit about systems. I was wondering if you could discuss the importance of ensuring that people with disabilities are consistently and appropriately accommodated when interacting with policing systems, and how can we collectively and systemically protect people of color with disabilities from police violence?

Keri Gray:

It is tough. That’s a tough question. I want to look at it two ways. The first way I want to look at it is I want to encourage everyone who’s listening to the podcast and things of that nature to ask a real question around is our policing system working? Ask it and wrestle with it, bang on tables around it, debate with your peers, your comrades. Have the discussion because on one hand, there’s the option of we can make some changes, we can adapt our system to make it better, but on another hand, there are those of you who are in the space who may be more abolitionists and who may just answer that question and say, “Our policing system isn’t working and the solution is something so different than what we currently have. We got to get moving on this alternative practices and processes to policing.” And I don’t want for folks to make it seem like that is leaps and bounds from where we could potentially go because we’ve seen communities and cities practice this.

One of the amazing things that came out of 2020 is that we saw a series of different schools and campuses who started to say, “We are not going to allow policing in our schools anymore.” That’s powerful. I don’t know where people went to school at, but it’s very common to have officers at school for a variety of different reasons, all sorts of things can happen, but that’s another area where people are experiencing disparities in the sense of who gets in handcuffs, who gets suspended, who gets sent to the alternative school, who ends up in juvie, all of these different things, and the disparity is that it’s definitely happening to our students of color and it is happening to our students of color with disabilities for sure.

And so for schools to turn around and say, “You know what? We might need some help. Our schools, our educational system, they need good people to ensure that things go smoothly.” I didn’t go to a soft school, I’ll just say it like that. Where I went, I’m from Longview, Texas, I’m from the South, and I’m not saying we didn’t need some sort of authority, folks who could really get us together, but to say that it’s policing is another answer to that. I’m trying not to go in circles with you here.

Well, all of the that to say, one, I want folks to really consider alternatives, and then two, I think that acknowledging the fact that we are in reality, that policing is a big part of our systems and things thus far, we definitely need to make some philosophical changes on what’s happening. Just the treatment, the lack of people understanding, to your point in terms of accessibility, not even thinking that someone might need an ASL interpreter, American Sign Language, not even thinking that it’s essential that you’re asking about medication needs. All of these things are part of it, and all of them lack a philosophy of disability justice. So I think there’s a couple of routes that folks should take and we need your advocacy, I would say be an active part of the solution.

Renaldo Fowler:

Okay. Thank you, Keri. Now, I’d like to move a little bit in a different direction. Can you share inclusive community-based strategies that does not involve policing as the sole means of safety?

Keri Gray:

Yes. So again, sometimes I wish this was live. I kind of want to ask a question and see what folks are a part of, but a big response to have to that is all about local organizing. We tend to see the big moments in life. So 2020 was such a viral moment, if I could put it like that. All eyes were looking at Louisville, Kentucky, were looking at different places across the country and seeing how united folks were around Black Lives Matter. We saw corporations, we saw representatives, we saw community members. It was a big year. However, we know that what really keeps our community thriving is the continuous engagement investment that we give in our neighbors day after day, and that type of love, that type of protection, advocacy happens when you are involved on a local level and when you are a part of that solution.

So I’m based in the Washington D.C. area, and we have an incredible organization all out here called Harriet’s Dreams, and they have a fellowship where they bring in organizers every year and teach you the fundamentals of how it works, how you can be a part of it. Organizing isn’t easy, y’all. It is profound. It is one of the most powerful, magical experiences that you can be a part of to be united with your fellow comrades, but it ain’t easy. It is about being able to strategically understand what is our goal or objective and how do we get there, and so they’re an example of an organization where they make sure that you have those type of knowledge, that you’re meeting people across the community, that you’re understanding different ways that you can support those, that can be an alternative to efforts such as what happens in our policing. So that’s just one example, but there are so many. So I want to encourage folks when you’re thinking about what is the alternative, it is definitely about getting involved in what’s happening in your community.

It’s about having the relationship with the schools, it’s about having a relationship with the disability programs within your community, and there are even national organizations that have chapters all across the country. If you think of the National Urban League, and you can likely find your local Urban League, you can likely find your local NNACP. So there are options of ways to get into this work, and I think when we’re thinking about community-based strategies, these are the groups that are understanding who their community are and what sort of solutions do you need. Are the solutions about needing more economic empowerment in your community, about needing more food sourcing, about needing more spaces for childcare, mentorship? What does your community need and how can you be a supplier? We have this statement in organizing spaces that says, “We keep us safe,” and so it is a call to action for us to get involved, if you’re not already, but to find a place where you can really be a support to those around you.

Stephanie Flynt:

Yeah, and I love that you brought up getting involved and establishing those partnerships within the community, within the schools, with different organizations, and so I’d love for you to expand a little bit on that. What advice do you have for members of the disability community specifically or for our network of organizations who work in the disability community in terms of getting involved and working towards this justice nationwide?

Keri Gray:

I think I’m thinking of two pieces of advice. The first one, I want to encourage you to find your political home. Where’s the space that loves on you and challenges you? Where’s the space that teaches you about Black queer politics, about Black disability, Black Disabled Lives Matter, about disability justice? Where are the spaces that keep you in the know about what’s happening in your community, that asks you, “What is your perspective on this?” That provides an opportunity for you to get involved, find your political home.

From one recommendation I have, so at the top of this podcast was mentioned that I’m a founder of an educational platform called the NAMD Advocates, the National Alliance of Melanin Disabled Advocates, and we were founded for a reason of really spreading awareness around disability justice from the perspective of people of color. And that’s necessary. It is necessary for us to find each other, people of color with disabilities and to create spaces for each other, to recognize the things that we experience and that we go through. It’s also important for us to recognize the disparities, the lack of leadership opportunities, the lack of executive positions, the amount of violence and discord and all of the things that we experience across industries within the movement, within policing, within the workplace.

All of these things happen. And so by us getting together… So the NAMD Advocates was created for disabled people of color and BIPOC allies to learn, grow, and gather around racial and disability justice. So I want to encourage you to check out our website, see some of the things that we’ve been a part of. I named earlier us convening folks in 2020 around the Black Lives Matter movement. We also host the Annual Leadership Summit. We find different ways for us to educate, inform and equip people with skills and necessary skills and resources to help you be successful in this work. So the NAMD Advocates can be a space for you. You can go to my website, which is withkeri.com. That’s W-I-T-H-K-E-R-I.com, and you’ll see our information across the website.

But the overall piece to this, as I mentioned, is find the space that fits for you, right? NDRN is an incredible network to be a part of. There are so many spaces that are doing incredible work. The first organization where I learned about my politics in terms of Black liberation was an organization called BYP100, Black Youth Project, and it’s there that I really saw the in depth of policing and all of these different things. So the biggest piece that I want to encourage you is to stay involved, to find a way, and to find your political home.

Michelle Bishop:

Keri, this was incredible. Thank you so much just for all of your insights and for those ways for people to plug into the movement and get involved. Everything you’ve shared with us, we will put in the show notes. The folks know where to find that information if they want to learn more, and more importantly, if they want to do more. But thank you so much for joining us today.

Keri Gray:

Thanks for having me. Appreciate it.

Michelle Bishop:

And for our spotlight story today, we’re shaking it up a little bit. I know you’re used to people with disabilities talking about some of their individual lived experiences, but we couldn’t resist the opportunity since we have Renaldo here with us today from Arizona to give him a chance to do the spotlight story and talk a little bit about the African American Conference on Disability. If you’re not familiar with it, it is such a unique conference that happens annual in Arizona that we think is just amazing and also really shines a spotlight on the intersection of race and disability. So Renaldo, if you can just take it away and tell us a little bit about what this conference is, how it came about, how it’s grown, and what it’s meant to the community.

Renaldo Fowler:

Thank you, Michelle. Yeah, the African American Conference on Disability, it was co-founded almost 12 years ago by myself and David Carey, who works for the Arizona Independent Living Council. And so to make it really a story short, about 12 years ago David and I were sitting down having a lunch, and we just struck up a conversation. I’ve been in the disability field for almost four decades now, and David’s the person with the disability. I think he’s been injured for about almost 30 years, and one of the things, the common thread, that we saw in Arizona, Arizona African American population is around 5%, 6%, but we’re a growing state. But one of the things that we noticed, there was a common thread. We would be at different events, statewide, city, municipal, it didn’t matter. We would not see African American families there. We rarely saw persons with disabilities, African Americans with disabilities at these events.

And so we had this conversation, “Well, let’s do something about it,” and David said, “I have some monies. Maybe we can get some lunches together.” I said, “David, let’s get some speakers together.” And we put the first conference together in three weeks. And so we had about 100 people attend the one-day session, and we got one of our legislators to come in and talk about some things. And so based on that 15-minute conversation, the African American Conference on Disability was born some almost 12 years ago, and so for the last 12 years, we’ve met in person. And so we’ve grown for about 100 people to about between 400 people prior to the COVID-19 pandemic. And so we’ve had speakers who attend the conference throughout the United States. We cover race and disability, we cover many different topics. Much of our work is in line with our priorities with the P&A. We partner with community-based organizations.

We do a lot of partnerships out in the community, and so when people talk about the African American Conference, I talk about the African American Conference for the African American community and for those folks who serve the community. So that’s really a big focus that we have of the conference, and one of the unique things that we pride ourselves doing is we create a safe environment for African American families and persons with disabilities to come in and talk about their needs. So the format of the conference for the last several years is we’ve had a one-day conference, and in that one day, we have three sessions opening lunch session, closing sessions, and we’ve had 24 workshops. So we run a lot of workshops at a time. We try to keep those spaces small and we try to keep them personal and unique where the audience and the speaker have an opportunity to bond. We talk about networking in the community.

So we do these things at the African American Conference. We’ve had commissioner Thomas Hicks there, we’ve had previous administration of community living speakers there, we’ve had our former county reporter who’s now our Arizona Secretary of State, he’s been at the conference. With a state with such a small population, a lot of people reach out to me from different states with larger African American communities, and just talk about how we’re able to do this in Arizona, and I’m just going to say this, we have a great developmental disability network in Arizona. I just want to kind of put a shout-out to that. Our university USEP program in Arizona, our DD Planning Council and our Protection and Advocacy, this is a really great DD Network project.

And so as I mentioned, prior to the pandemic, when the pandemic came on board, we had a lot of discussion, “Do we cancel it? What do we do? We felt it’s very important to look at these topics,” and so we decided to go virtual. For the last two years, we’ve been virtual, and I’m just going to say this to you, that one of the things that the COVID-19 pandemic allowed us to do when we went virtual is to reach a greater audience. The last African American conference, the last two conferences we had virtually, we had 11,000 people attend those two conferences over the last two years, and last year we had over almost 7,000 people attend last year’s conference. We had 11 countries, 32 universities.

So when you look at the impact of the conference at the state level, at the national level, and we even laugh about it even at the international level, I think we’ve made some significant impacts, especially in Arizona with the African American community. We’ve created a safe place, we have good support from the African American community in Arizona, and also we are partnering with some historical Black colleges and universities with the African American Conference, and I’m really proud to say that I’ve been working with several African countries who have attended in-person and who’ve attended virtually, and also we have someone I believe from Malawi, Africa who’ve emailed me back and forth, and they’re looking to try to duplicate some things like this in Malawi, Africa, and they’re going to be attending the conference in person.

So this year, what we decided to do for 2023, we’re going to be meeting in person on June 16th in Phoenix, but we decided to go ahead and continue with a virtual component of the conference in honor of Black History Month. So on February the 8th and 9th, we’re going to have four presentations, two a day, and we have some great speakers for the conference in February. So that information will be available this week and we’ll get that information about the virtual conference, and we’re looking to open up the in-person conference sometime in March. So any more stories you would like to hear about the conference, Michelle or Stephanie?

Michelle Bishop:

I think this is such an amazing conference. It’s, in my experience, truly unique. I can’t think of anything else like this that’s happening. Is there something similar out there, Renaldo?

Renaldo Fowler:

We have been around for 12 years, and one of the things that we talk about, Michelle, is this is to my understanding… Now, there are some other organizations in the last few years, but for the last 12 years, we’ve pretty much been the only comprehensive conference that addresses the intersection between race and disability in the US, and I think that’s what some of the things are really surprised. So I’ve been working with folks out of Philadelphia, talked to them. One of our speakers this year is out of Atlanta. She’s going to be opening it up, and we’re really excited about that. We’re going to be bringing in some families from Wisconsin to talk about their services and how they built a project in Wisconsin for African American families.

I’m not really familiar with the different ones. I know the disability rights, and one of the Carolinas has one. I think California had a conference, or had one or having one, but really, one of the things that we want to do is have a comprehensive conference. We talk about mental health. We actually have a legal track as a part of the Protection and Advocacy. We’re working with the Arizona Center for African American Resources, which is a community-based organization. Now, one of the things, Michelle, I’m going to really say this to everyone out there. We are a discipline-based organization. So when you go out and you work with other grassroots organizations, oftentimes there’s a building of partnerships and understanding, and designing the terminology. The terminology that we use in the Protection and Advocacy is slightly different than they use in independent living circles.

And also, if there’s a community-based organization that may not be disability-based organization, it may require you to work with them in learning people-first language. They may use disabled or handicapped people. That’s because they’re not familiar with… So there’s a learning process. So I want to let everyone know when you reach out to organizations and they may not necessarily use a correct terminology, don’t take offense to it, use it as a teaching moment because they’re not in your world, and so that’s one of the things that we’ve done so much with the conference is reaching out to non-organization within the disability community, to supporters to get speakers. We work with mental health, we do healthcare, we’ve had law enforcement participation in the conference.

So I would really encourage everyone, if you’re interested in really learning how we do the African American Conference on Disability, as I mentioned to you earlier, February the 8th and 9th, we’re going to have a virtual component of the conference that’s going to be available coming up within this week. And then June 16th, which is the weekend of Juneteenth, that was interesting how that played out. So it’s the Friday before Juneteenth, which is going to be over a three-day weekend. So if you want to travel to beautiful Arizona in June, we would love to have you. It’s going to be at the Hyatt Regency in Phoenix. So we’ve grown from 100 people to over 400 people attending the African American Conference in person, and last year, as I mentioned, we had over almost 8,000 people attend the conference worldwide.

Michelle Bishop:

That is truly incredible, Renaldo. Congratulations just seeing all of your hard work really come into fruition with this conference. And to all of our listeners, I really encourage you to participate in this conference in any way you can. I have, and I’m a big fan.

Renaldo Fowler:

And Michelle, you know what? We are always looking for speakers as we prepare for 2024. So if anyone’s interested, please reach out to me and we would love to have you to see what you have to bring to the community. It’s just been such a great joy to see how the conference has grown and really the need for the conference, and as I mentioned to you, we provide a great safe space for people to come talk about some concerns that they may have, that they may feel a little uncomfortable in different settings.

Michelle Bishop:

That is a great idea. We’ll include some details about the conference and the show notes for today’s episode. So folks who want to participate or may be interested in even speaking in a future conference, they know how to reach out and how to get involved. Thank you, everyone. I think that’s our episode for today. I hesitate to ask because it almost destroyed the PandA Pod last episode, but Stephanie, do you have a joke today?

Stephanie Flynt:

I do. See, see. Okay, I think that Michelle secretly likes my jokes. I personally think she does. Look, if you think the alternative or whatever, feel free to reach out to us. But anyway, here’s the joke for today in honor of winter. How do you follow Will Smith in the snow?

Jack Rosen:

Oh, God.

Stephanie Flynt:

Any guesses?

Michelle Bishop:

Where is this going?

Stephanie Flynt:

You follow the Fresh Prince.

Renaldo Fowler:

Okay. All right.

Stephanie Flynt:

Okay. All right. People from 2000s and up, you may not get it, but just use Google. It’s your friend sometimes. Jack’s like, “I can’t decide if I want to edit this out or not.”

Michelle Bishop:

So if you have any good jokes for us, or even better topics for future episodes, you can always hit us up at podcast@ndrn.org. I promise I won’t resign over the jokes. So we will all see you next month. Thanks, everybody.

Stephanie Flynt:

Oh, we have to shout out our social media. People need to know what we’re up to. So feel free to search us up on Facebook, Instagram, Twitter. We are @NDRNAdvocates. I think we’re also at the same tag on LinkedIn, but Jack, feel free to correct me if I’m wrong. But yeah, follow us for all the things.

Jack Rosen:

Technically, we’re just NDRN on LinkedIn, but whatever.

 

Justice Shorter returns as a guest-host for this episode, where we interview anti-human trafficking activists Ali Chiu and Susan Kahan. Then NDRN alumnus Ian Watlington joins us to discuss his experiences with inaccessible taxi cabs in DC. For a full transcript, check out our website.

DCist article: https://dcist.com/story/22/12/06/d-c-is-falling-short-of-its-taxi-accessibility-requirements-what-went-wrong/

Transcript:

Michelle Bishop:

Happy New Year everyone. Welcome back to a whole brand new year of the PandA Pod. Can we get like a round of applause, a drum roll, something? We’re back for another year.

Justice Shorter:

Hey, congratulations.

Stephanie Flynt:

We’ve got to give the people what they want and what they want is more PandA Pod.

Michelle Bishop:

Woo, that’s that’s absolutely the truth. And it’s because of your amazing host, oh my goodness. And we have a special surprise for the hosting team today. I am Michelle Bishop, voter access and engagement manager and one of your many hosts at the PandA Pod.

Stephanie Flynt:

And I’m Stephanie Flint, public policy Analyst at NDRN. And I’m also one of your hosts for the PandA Pod and…

Michelle Bishop:

Our guest host today is an OG. Introduce yourself.

Justice Shorter:

I am indeed. I am Justice Shorter, National Disaster Protection Advisor at the National Disability Rights Network. Hello, ladies.

Stephanie Flynt:

Hello, hello.

Michelle Bishop:

Hello. And of course, our faithful producer, Jack Rosen, who I really hope has the button where you bleep out people since Justice is back.

Justice Shorter:

First off, let me be clear, we’re not bleeping out Justice, we’re bleeping out the profane words that Justice often uses. There’s the very stark difference. I want to be very clear about it.

Stephanie Flynt:

Michelle, some sort of audio meme is going to come out of what you just said and it’s basically just going to be ‘bleeping out Justice’ and it’s just going to be viral on the internet now.

Jack Rosen:

I kind of want to edit it so it starts with Justice saying, let me be clear that’s just a long bleep.

Stephanie Flynt:

No, just be like, let me be and then just bleep things from there.

Justice Shorter:

It’s one way to go.

Michelle Bishop:

Just pick random words in every sentence Justice says and bleep them out for no reason. So it sounds like she said something terrible.

Justice Shorter:

Yeah, let me just veto that option right out the gate, there are more than enough terrible words that will likely slip out and you’ll have more than enough content. Leave all of the sweet and gentle and non-harmful words that I say, let them be. The others will stand on their own.

Stephanie Flynt:

If it makes you feel any better, they have been threatening to bleep out every single time I say chicken nugget. That makes very sad-

Justice Shorter:

[inaudible 00:02:20].

Stephanie Flynt:

I know, oh my gosh. Okay-

Justice Shorter:

No, I’m joking.

Stephanie Flynt:

No, fake news, fake news. We’re taking a poll.

Michelle Bishop:

We’re probably going to make a bleep button that is Stephanie saying chicken nugget, actually.

Stephanie Flynt:

There we go

Justice Shorter:

Concerning on so many levels.

Michelle Bishop:

More [inaudible 00:02:34]. Justice you see what it’s been like for me while you’ve been on hiatus, I need for you to come back.

Justice Shorter:

Awesome.

Michelle Bishop:

And the name of this episode is definitely bleeping out Justice.

Justice Shorter:

Mm-hmm, mm-hmm, taking Justice down every time, very concerning.

Stephanie Flynt:

Okay, let’s be clear, nobody can take Justice down, okay?

Justice Shorter:

Mm-hmm, let them know. Let them know, say it with your chest, Stephanie, say it with your whole chest.

Michelle Bishop:

Nobody puts Justice in the corner.

Stephanie Flynt:

No.

Justice Shorter:

You know what’s interesting? Quick side note, is that I was working at a disaster several years ago and one of the division leads for another project called my sighted assistant, my handler. It was like, “I think that’s Justice’s handler.” And I had to step in and say, “Nobody handles Justice. This is my sighted assistant and he is with me to support me with whatever visual needs that I may have at the moment.” But yes, I had to very much let him know who I was and what could and could not be said in that regard.

Michelle Bishop:

Nobody can handle Justice. That’s accurate, nobody can handle Justice.

Justice Shorter:

It’s a thing, people slip in all types of random words and phrasings when it comes to people with disabilities, not recognizing how coded and how, in some cases, just purely disrespectful it can be.

Michelle Bishop:

Accurate.

Stephanie Flynt:

For real though.

Michelle Bishop:

Jack, hit us with some news stories. What’s been going on in the network these days?

Jack Rosen:

On July 26th, the 32nd anniversary of the Americans with Disabilities Act, leaders of Buffalo’s disability community held a news conference and called on their city to respect their rights under federal law. “I’m ashamed to say that Buffalo does not have an ADA coordinator as of yet,” said Bj Stasio, Buffalo resident and co-vice president of the South Advocacy Association of New York State, which represents and is run by people with developmental disabilities.

Michelle Bishop:

Well this is an ongoing issue for the state of New York in general, I know. It’s horrific that Buffalo doesn’t have an ADA coordinator, but if you all remember back in 2020, at the height of the pandemic, Disability Rights New York actually had to file a suit against the governor at the time, Andrew Cuomo, because they weren’t using ASL interpreters during the pandemic briefings. What exactly were deaf people supposed to do?

Stephanie Flynt:

Oh man, I remember that.

Justice Shorter:

So do I, we actually worked very diligently to make sure that the strategies that they were evoking was shared across the entire network. And we did that by a COVID Central, which was an internal platform that myself and Tina, who used to work on our communications team and a couple of other folks were really instrumental in getting off the ground. But that was really an information portal and center to provide rapid responses in terms of strategy and tactics that were happening all over the country, so that P&As didn’t have to really reinvent the wheel, but could really utilize some of the techniques that folks were already having success with in different parts of the country. That case that you just mentioned was one of them.

Stephanie Flynt:

Yeah. Jack, do you have like a boo button? Are we allowed to boo people on this podcast or are we trying to be nice?

Jack Rosen:

You can just go ahead and boo, I can-

Stephanie Flynt:

Boo, I don’t like people.

Michelle Bishop:

Okay, what else do we have in the news these days?

Jack Rosen:

Also in the news from the Citizen Times, landmark child welfare suit targets North Carolina after USA Today Network investigation. Our affiliates, Disability Rights North Carolina are part of a lawsuit claiming that their state is failing the needs of children in facilities, alleging unfortunately, abuse at those facilities and trying to get these kids the home and community based services that they need.

Michelle Bishop:

This one I know is particularly heinous also because I believe it involves kids that are in the foster care system, who don’t have a parent right outside the facility advocating for their rights and for their needs.

Justice Shorter:

That’s right, Michelle. There is just so much to be concerned about when we think about America’s foster care system, especially as it pertains to young people and children with disabilities. We hear about so many different stories of neglect and abuse. And so this is, of course, just yet another way that we need to remain vigilant and make sure that as far as we’re concerned as a network, that we stay on top of our goal and our mission to protect the rights of people with disabilities. And of course, that is inclusive of children and young people with disabilities as well.

Michelle Bishop:

And shout out to Disability Rights North Carolina. This one is actually a federal class action lawsuit. Can’t imagine what a heavy lift that must be. But thank you Disability Rights North Carolina for the work that you’re doing.

Stephanie Flynt:

Yes. As I like to say, y’all are killing the game.

Justice Shorter:

That’s right. They have such strong advocates and attorneys. They’re just simply stellar, superstar team over at Disability Rights North Carolina. I love them dearly. Shout out to you guys.

Michelle Bishop:

Jack, hit us with one more news story. Do we have any victories in the news lately?

Jack Rosen:

We do. From 2 News, WDTN, Huber Heights family wins lawsuit against state agency regarding help for son’s autism. In Dayton, Ohio, a federal judge ruled in favor of a Huber Heights family who claimed a state agency denied their son support for his autism spectrum disorder. The son reached out to Opportunities for Ohioans with Developmental Disabilities for support. OOD is a state agency that provides resources for people living with disabilities, including VR services to help prepare for employment. While the agency provide him with supplies and computer, it denied him money for a program that would help him with college life.

Michelle Bishop:

Yeah, that’s interesting. They talked about how there can’t just really be like a blanket policy that says there are certain types of programs that we just don’t fund for college and university students as if people with disabilities don’t go to college.

Stephanie Flynt:

Right, and as if they can’t be successful in and out of college. Let me tell you, I have met many individuals with intellectual developmental disabilities who have gone to four year universities and they have done so amazingly well. And so to not offer these individuals funding to do these things that are going to ultimately enrich their life, it’s not okay.

Michelle Bishop:

I will say, quick shout out to Kevin Truitt at Disability Rights Ohio, who is a litigating boss. We see you, we see the work that you’re doing, Kevin, keep it up. And also, more importantly, to this student, Hunter, who is going to do big things. He’s going to go to college, he’s going to have a career. Actually, I think I remember from this article, he’s into design. So Hunter, if you’re listening, hit up Jack. He’s in our communications department.

Stephanie Flynt:

Yes, absolutely. And I’m just really glad that this ended on a good note. I’m super excited for this student and I wish them all the best in their future endeavors. This is really exciting.

Michelle Bishop:

All right, thanks, Jack. Well let’s get into our main story for today, shall we?

Stephanie Flynt:

Let’s do it.

Jack Rosen:

We have some great guests today. Michelle, do you want to tell the folks who we have on?

Michelle Bishop:

Absolutely. So today we’re going to be talking to Susan Kahan and Ali Chiu. Susan is a member of the clinical staff at the University of Illinois at Chicago’s Institute on Disability and Human Development, where she provides individual and group therapy for children and adults on a broad range of mental health, developmental and behavioral concerns, specializing in trauma. Susan provides consultation, actually, around the country on disability rights related topics, including trauma and trauma informed care, sexual abuse and human trafficking, sexuality and healthy relationships and crisis intervention. In addition, Susan is certified in forensic interviewing with additional certification in interviewing people with disabilities and people who do not speak. Susan provides training for law enforcement, trauma centers, disability agencies, professionals, schools and families.

We’ll also be chatting with Ali. Ali Chiu has been a public service provider since 1999. Her focus has been on anti-violence, domestic violence, gender-based violence, sexual exploitation, and human trafficking specifically. She also has been an advocate on issues relating to seniors and people with disabilities. She is currently the Elder Abuse Prevention Program supervisor at the Institute on Aging in San Francisco and is a member of the AAPI Elder Abuse Steering Committee with San Francisco District Attorney Victim Services Division. Ali holds one of the community seats as a member of the Family Violence Council of San Francisco and is also a steering committee member of the National Human Trafficking and Disabilities Working Group. Ali is a woman of color, an immigrant, a single mother, a domestic violence survivor, and a person with a disability. Justice, this national human trafficking and disabilities working group, is this how we know Susan and Ali? Is that what you’re participating in?

Justice Shorter:

It is indeed. I’ve been serving on this steering committee since 2019 and I have had the distinct privilege and pleasure of meeting some fantastic advocates all across the country, who do this work alongside survivors of human trafficking with disabilities. It is an issue that does not get enough attention and that is why we’re airing this episode this month because January is human trafficking prevention month across the country. And so we want to make sure that this issue remains on your minds, in your hearts, and of course, on your lips as we continue to speak out and hopefully bring about a difference and a change in the lives of the people who are the most impacted. And that of course, are individuals with disabilities who are at risk of being trafficked or who are on the other end and who have survived a trafficking experience.

Michelle Bishop:

So January is actually National Human Trafficking Prevention Month. If you all didn’t know that because I just learned that in the making of this episode. Justice, you lead our work on anti-human trafficking. Justice, is that true? Did I just make that up? I think you lead our work on anti-human trafficking-

Justice Shorter:

You did not make that up. I have been working in this area since 2019 for NDRN. And it started off with one of our fabulous P&As asking me a question about the likelihood of individuals with disabilities being trafficked post-disaster, given all of the continuous and maybe heightened risk factors that people with disabilities have to face, like the loss of support systems, being displaced, all of these different unique risk factors that are often heightened and they’re exacerbated during disasters. And so they had questions about it, wanted to talk about it. There was a whole event that was held by their Department of Health and other agencies and organizations and I said, “This is something that we need to be focused on, at least as it relates to the portfolio that I had been tasked with at NDRN.” And so that is how it became a steadfast portion of the work that I do. And as a result, I started working with the National Human Trafficking and Disability Work Group, which is where I met our wonderful guests who we have on the show today.

Stephanie Flynt:

We’re excited to have you guys on the show. So I guess my first question for you is, or our first question for you is just talking about who you are and also too, just talking about how you became involved in such a specific issue, human trafficking of people with disabilities is something kind of like Michelle was saying earlier, I had no idea that January was National Human Trafficking Prevention Month. And it’s something that again, you just don’t think about on a daily basis. And I feel like it’s definitely something that we need to bring attention to.

Justice Shorter:

And so, Susan, can we start with you? A little bit more about your work and how you got started in the field of human trafficking.

Susan Kahan:

My name is Susan Kahan. I work at the University of Illinois at Chicago at the Institute on Disability and Human Development. And in that context, I work as a mental health therapist in the clinic, the Developmental Disabilities Family Clinic at the institute. My area of specialty is trauma, so I work with children through adults, all of them have a developmental disability. And most of my clients have experienced some significant trauma. Because of that work in the area of trauma, I developed a collaboration with the Chicago Children’s Advocacy Center.

The Children’s Advocacy Centers, there’s one in almost every county around the country, they coordinate the investigation of case of sexual abuse of children and life threatening physical abuse of children under the age of three. So in the context of my collaboration with them, issues related to both sexual abuse of children, but also trafficking arose. I also do a lot of consultation and training for law enforcement and with the state’s attorney’s office here in Chicago. And I will be called in occasionally to consult with them on cases that involve trafficking of individuals, both adults and children with disabilities. So it was through the mental health trauma field that I ended up in this area of work.

Justice Shorter:

Fantastic, appreciation, Susan. And Ali, over to you.

Ali Chiu:

Sure. Hi, this is Ali Chiu. I actually started it, I was a volunteer at one of the domestic violence shelters in San Francisco back in 2000. I’m not sure if people remember that big, big case happened in Berkeley. There was a group that trafficked a whole bunch of people and people die in this restaurant and that’s when I was volunteering at the shelter at that time. And so I started to do some work as a language advocate because I speak Mandarin. So different situation happen and I would accompany case manager to go to either the Immigration Center or the court or whatever to interpret.

And that’s how I got started to do really groundwork. And over the years, in between doing domestic violence as an anti domestic violence advocate, I would do take cases, mostly Mandarin speaking, sometimes Cantonese speaking or Spanish speaking and working with interpreters. So that’s how I started it. And as a person with disability, I got into a lot of different advocacy work and then bring that intersection together like, whoa, what’s going on? Why are we not talking about this? So I got involved with NHTDWG, the National Human Trafficking and Disabilities Working Group. I see when they started it and so here I am.

Michelle Bishop:

Thank you so much for that. Both of you have so much experience around these issues. We’re excited to have you on the podcast today. I was wondering, as we get into this conversation, if you can just help break down for us what makes human trafficking different from other types of labor and sex crimes?

Ali Chiu:

When I start learning about human trafficking, first thing what I learned is there’s a lot of similarity to the dynamic of the domestic violence. There’s a power and control, but with the human trafficking, it’s kind of like wider net. There’s a power and control, there’s also a lot of different complicated stuff. And what I learned first is that to stop human trafficking, and I hope and I’m not jumping ahead too much, is really hard because there’s a lot of money and stuff going on. And I think that that’s one of the biggest obstacle we have is there’s a lot of international stuff. There’s a lot of, within US, things happening. Going a little deeper is when we look at human trafficking in the area with people with disabilities, it’s extra hard because there’s different dynamic we’re looking at that people are being taken advantage because of their disability. And I’ll stop right there, maybe Susan-

Susan Kahan:

Yeah, this is Susan. I think all of the elements of the dynamics of trafficking that Ali talked about are really important. Some of the other ones that I think about are when we’re talking about what is the difference? Are there differences between sexual abuse and sex trafficking, for example? As a mental health person, I’m always interested in the psychological dynamics of things like trafficking or sexual abuse, and how do we help survivors break away from the dynamics that were created in the contact of abuse or trafficking? One of the hard parts about trafficking, and it can happen in sexual abuse as well, but it can be very pervasive and kind of a stranglehold for survivors, something we talk about as trauma bonds. Many survivors of trafficking don’t even realize necessarily that they’re being trafficked.

That what’s happening to them is not okay, that they deserve better, they deserve more, and that the trafficker does not necessarily have their best interest at heart. One of the things that can draw people into trafficking is a need to feel needed. A need to feel like you belong to a group or that you are loved in a relationship. And particularly in sex trafficking, we see a bond that can develop between the person being trafficked and the trafficker where the trafficker is able to man manipulate the thinking of the person being trafficked to convince them that I’m your boyfriend, I love you. And if you love me, you’ll help, you’ll help out by bringing money into this relationship. Or if it’s a group of women, this is our family. You owe the family, the family provides you love and protection and belonging, and in exchange you help support the family just like other members of the family help support them.

And the result of that is that it can be, at times, very difficult to get somebody out of a trafficking situation. A number of the organizations I work with, particularly those that are involved with youth who have been trafficked, the biggest problem they have is the youth returning to the trafficking situation. They’ll bring them in for survivor services, sometimes even residential services, but the youth will take opportunities to leave and go back to a group where they felt like they belonged. Even if the way that they were treated or the way that they were made to feel like they belong from an outside perspective looks intolerable. But to them, to the person being trafficked, sometimes it feels more tolerable than the situation that they came out of.

Ali Chiu:

I would like to add onto that too, that on top of that, there’s a lot of threat. They can’t leave because they are threats back in their country or wherever they are and they can’t leave because of that. I think it’s so important to understand that extra dynamic there, that there’s a lot of threats. Some of the cases I’ve work on, we interviewed them and they would have a uniform stories, one story. And they wouldn’t tell us what’s going on for real. They would tell us something that’s complete… We would just hear. And that the trust, to build that trust is really, really difficult. And I have to say that especially when you speak their language, they don’t trust you because those people might be the same people that trafficked you, so they don’t want to trust you. And sometimes I going in, they go, “I don’t want to talk to you, I don’t want to tell you.” So I just want to add that dynamic in.

Stephanie Flynt:

Yeah, and I think that that’s super important to think about. Hearing both of you talk about this and the dynamics there, it almost sounds like there’s a mix. A mix of people who understand what’s going on and are afraid to leave and don’t know how to get out. And then people who have no idea that they’re being trafficked because of the things that the traffickers are saying and they think that it’s normal. And to me, that is just so heartbreaking. And so I guess that leads me into the next question of just talking about some of the key considerations. What are some of the key considerations that advocates should be thinking about when it comes to these efforts of preventing trafficking of people with disabilities?

Susan Kahan:

This is Susan. I think one of the most important keys to prevention for trafficking of people with disabilities is raising awareness that it happens. I think when I’m interacting with disability organizations and talking about trafficking, very often the response that I get is that, “Oh my gosh, I never thought of that. I never considered that as something that could be going on for some of the people we work with.” And so the foundation to prevention of trafficking of individuals with disabilities is recognizing that it is an issue, that it is something we always need to be considering when working with people and recognizing signs that somebody might be experiencing abuse of any kind, whether it’s labor or sexual abuse or physical abuse, that one possibility is a traveling scenario and keeping that in [inaudible 00:24:48].

Ali Chiu:

I think that one thing, as Susan say, is doing those outreach and doing those education. I think that one point I wanted to say, and this is we’re doing a podcast, to really let folks know that, hey, when someone take advantage of a person with disability, their benefit and make them work, make them do things, that’s human trafficking. We have to educate and support service providers in understanding that fact. A lot of disabilities organization, a lot of organization in fact, don’t know that, hey, wait a minute, this is human trafficking.

Someone who make friend, befriend. I have a case where a woman, she’s an older woman and her daughter actually took her SSI check and make her mother do this and that. And her mother was on the street, I found her on the street. We work with her and her mother had, she passed away a year ago, had intellectual disability. And we work with, “Oh yeah, my daughter…” So that’s not okay. Her mother would do different thing to survive and her daughter held that SSI check, held her food stamp card. So just really doing that outreach, doing that education to prevent that happening.

Justice Shorter:

I want to pick up on a couple of threads that have been mentioned here. Ali, you mentioned how this is such a relevant topic and issue as it relates to individuals who come to this country to work when we’re thinking about labor trafficking. And Susan, you mentioned the sexual abuse and exploitation that tends to happen and the thread that runs. And Ali, you’ve also mentioned that the sexual abuse, the sex trafficking piece as well, the thread that runs between all of them, and we talked about this a little bit at the top of the podcast, we’re thinking about this in terms of exploitation that’s happening, coercion that’s happening, as well as money that’s taking place as well, whether it’s being the withholding of funds and financial resources that people need to survive, unless they commit to various sexual acts or certain labor that people are requiring of them in order to receive the financial resources or supports that they’re very well entitled to or receiving mother sources. So that is a piece of it.

And then there’s also these other complicated dynamics related to family or familial connections and friendships or relationships with other partners. And I also want to throw in their prospective caregivers, and you guys mentioned this as well, but I just want to highlight that as a particular issue of concern, especially as it relates to individuals with disabilities or older adults, people with mental health considerations as well. If you have someone who is withholding care or withholding access to prescriptions or medications or access to treatment, unless one commits a sexual favor, unless someone is able to commit their labor in some way, shape or form, then that also brings us into this conversation around trafficking. Some people look at this with a very detached and dissociative type of lens whereby we only think about trafficking in terms of something that happens in different countries. Or if there is no real movement happening, if someone didn’t take you over state lines or over the border, then it’s not classified as trafficking.

And you two have certainly alleviated those illusions in saying that that is not true, but it can happen in a number of different contexts and situations, circumstances that people may find themselves in. So we appreciate you doing that. And there’s a question here that I would love to ask. And Michelle, I know you have a similar thought, so I’ll let you come in here and dovetail me. But I work on disaster and crises of all sort, and I’m always concerned about return and recovery and what that looks like in a disaster context. But I’m also very keenly interested in what that looks like in terms of survivors being able to return to their community if they have been taken someplace else or if they’re just in a survivor program to support them in their recovery, what that looks like for them. Often we think about this in terms of the response, let’s get people out. But what does that look like in terms of their long-term recovery and their return to their community or to some semblance of wellbeing. Michelle, I don’t know if you wanted to tack anything onto that question as well.

Michelle Bishop:

Honestly, Justice, I was going to tell you to take that one from me, so that was perfect.

Justice Shorter:

So in that case, I’ll shoot it over to Susan. Would you like to kick us off? What does return and recovery, what does that look like after someone has been taken out of a trafficking situation? What does the process of recovery, healing, what does all of that look like?

Susan Kahan:

This is Susan. I think one of the most important things to recognize is that the primary group that I work with are individuals with developmental disabilities. And there are a lot of myths and misperceptions about the ability of people with developmental disabilities and intellectual disabilities to benefit from therapy and to benefit from the kind of interventions that we provide. Or even that somebody with an intellectual disability might experience trauma in the same way the rest of us do. There’s kind of a sense like, oh, they don’t even know what happened. They’re fine, they’ll be fine. Not in my experience. People know when their body’s been hurt, people know when somebody else has controlled them. They may not be able to voice it in a way that we can hear or we can understand, but people will communicate distress and they will communicate their trauma in ways that we have to learn to understand and not to dismiss.

I’m a mental health professional, so of course for me, a big piece of the process of, I’m going to just refer to it as recovery right now for lack of a better term, is the idea that we have to provide appropriate and sufficient mental health support, trauma support. We have to provide accessible survivor services, whether it’s physically accessible or accessible in terms of how somebody communicates. We have to trust that people are benefiting from the support that we give it them if we give it in a way that is accessible to them. So for me, what is the part of the process for having somebody resume a life outside of trafficking? A big part of it is the support that the rest of us, that we as a society, are able to provide individuals with disabilities, whether they’re developmental disabilities or other disabilities, in a way that is accessible to them. That’s an essential piece of that process of coming out of a trafficking situation.

Justice Shorter:

And Ali, your thoughts?

Ali Chiu:

Sure. I think that Susan say a lot of stuff that I wanted to say too, is that support extending to mental health and service providers. I think that one key thing is really understand how they were put into that place. Not to blame the victim of course, but there may be reasons that poverty and different situation led to that, that they’ve been trafficked. And understanding that and to really create that network, build trust, rebuild that trust with them. Maybe there was somebody we could connect them with. Maybe there’s something that we could support them with.

If there’s a immigration issue, if there’s a benefit issue. If there’s any issues that we could think of, reconnect and empower them to let them know that you know what? We can do this together, you can do this together. And that’s one way to support them in that way. Support is so important, network is so important. I don’t think anybody could survive by themselves. So recovery, like Susan say, we don’t have a better word for that yet. But in that process, it’s really having that support, having that network to help rebuild that environment for them.

Susan Kahan:

This is Susan. I think the other piece that we might think about, particularly in light of what Ali said, is thinking about how are we creating environments that people return to? Are they trauma informed? And so getting at a trauma informed environment embodies some of the elements that Ali was talking about. Safety, people need to be in an environment where they feel both physically and emotionally safe, control, people need to feel empowered. They need to feel like they have control over their own lives, over decisions, that they are not being controlled, but that they act in their lives. Life doesn’t act on them.

And so the third element that we need to make sure is present in the environments that we’re creating is that people feel connected, connected in a healthy way. Because often, they’re coming out of a situation where they may have felt connected, but the connections were distorted, and the connections were based on unhealthy dynamics. We need to provide that sense that there can be a different kind of relationship with other people that involves trust and involves safety. So when we’re creating environments that involve safety, control and connection, we are creating healing environments, environments where people will hopefully be able to benefit from the kinds of services that we can provide when we provide them in an accessible way.

Stephanie Flynt:

One of the things that I would be curious to know, just based on our conversation so far, is just talking about what inclusive resources exist in order to help people with disabilities who have been trafficked. Again, we’ve talked a whole lot about preventing trafficking and a whole lot about trafficking in general as it pertains to people with disabilities. And so just wondering what resources are out there.

Ali Chiu:

This is Ali. I like to take this real quick. I wanted to maybe redirect a little bit. I am particularly not excited to hear the word help people with disability. I think that what I like to see is really empower folks with disabilities. And biggest resource out there is really having and seeing people with disability as leaders in this field. We have to do that. We have to get people with disability involved with decision-making and involved with those resources. There are a lot of independent resource center around the country. There are a lot of advocacy groups in the country. Those are groups that we need to be speaking with when we do this type of work and really connect. And that’s why I really am excited to work with National Human Trafficking and Disabilities Working Group, is we connect different people in different field together to work together. So that would be my quick and so for that.

Stephanie Flynt:

Yeah, absolutely. And I just want to say, before we get to Susan’s comments, that I really do appreciate you clarifying what terminology here is most appropriate for this situation. So thank you so much for that. One of the things that we really do aim to do on this podcast is educate ourselves, but of course, also educate our listeners. So thank you so much for that.

Susan Kahan:

This is Susan. Piggybacking a little bit on what Ali said, I think that one of the issues that has come up in the context of the work that we do with the National Human Trafficking and Disabilities Work Group is a lack of accessible services and the fact that a lot of survivor services, as they exist currently, are not accessible, whether it’s for people with mobility issues, people with sensory disabilities, or people with intellectual or developmental disabilities. And that’s a big part of the work that we do, is trying to provide training, education, and support for organizations who are trying to become more accessible. But a big, big piece of that change is raising the voices of survivors, raising the voices of people with disabilities who are leaders in this field, recognizing intersections with other groups, Justice, there’s so much really great work and intersection of racial justice and disability justice and recognizing how that comes together when we’re trying to create accessible services or support agencies as they become more accessible.

Stephanie Flynt:

Yeah, absolutely, so, so important. And I love that you talked about the raising the voices concept, people with disabilities, raising their voices and allies helping to raise their voices. And honestly, I think that that is a perfect segue into Justice’s next thought or question.

Justice Shorter:

My question is simply this, what messages of hope and solidarity do you two have to survivors of human trafficking, who have disabilities? Any messages, any final thoughts or final comments of hope and solidarity speaking directly to them. And Ali, can we start with you?

Ali Chiu:

Sure, yeah. If you are listening to this podcast, I want you to know that you are not alone and you have friends, you have friends out there. Communicate with others, talk to others, and you will be safe. I know it could be a long journey, but when we work together, we’ll get there. That’s a simple thing to say and I am somebody who have done this work for a little bit, I’m still learning. And when we do work on the ground, face to face with folks, you see people’s faces, you sense their energy and people crave for connection. And that’s the thing that we take that and say, okay, we can take that connection and build trust on that.

That’s really, really important to build that trust. And once you build that trust, we could empower folks to come out. Sometimes it take a while, like Susan say, people do return. Statistically for domestic violence survivors. It takes them more than seven time to leave that relationship. And with the complication factor in dynamic of human trafficking, it’s going to take longer sometimes. And I don’t want to say that’s okay, but I want to say that we have to meet people where they are. So it’s a long process, but we have to be patient, we have to have that respect, we have to have that sense that, okay, we’re going to build that trust. And hopefully, sooner rather later, you will trust me and we can do this together. We can get everyone to safety.

Justice Shorter:

Gorgeous thoughts there, Ali, appreciation. Susan, you?

Susan Kahan:

The message that I’d like to share is if people are listening, who are in situations where they feel unsafe or where they’re being treated or exploited for their body, for their money, for their labor, I think what I’d like them to know is that they deserve better, they deserve more. That they have value and their value extends beyond what they can provide for someone else. They have value as a human and we see you and we’re here to support you. We’re here to extend a hand, as Ali said, there are friends out there for you. There are groups who will support you, who can provide a trusting, safe environment to help you achieve the life that you want to see for yourself. I think that that’s the message that I would most like to share.

Justice Shorter:

Michelle, any final words from you or any last thoughts here?

Michelle Bishop:

I just want to say thank you both so much. This is such a critical issue. I think that it’s largely misunderstood. I know that this episode is going to be really impactful for our network, but I also appreciate that both of you are really busy professionals who do this work on top of the regular work that you have every day. So thank you so much just for making the time to join us today. We really appreciate it.

Ali Chiu:

Thank you.

Susan Kahan:

Thank you so much for having us.

Michelle Bishop:

So for today’s spotlight story, I’m going to start off by asking our co-host, Stephanie, to please restrain herself because I know how worked up she gets about these issues. Stephanie, are you ready? Have you done some deep breathing exercises?

Stephanie Flynt:

I have been working on my meditation. I’m on step three of 10 with my meditation guide.

Michelle Bishop:

Not exactly 10, but maybe ready for the spotlight story today.

Stephanie Flynt:

I guess I’m ready for the spotlight story. And we have a very special guest today that we are super excited about.

Michelle Bishop:

A personal favorite of all the hosts of the podcast.

Ian Watlington:

Well thanks, guys.

Michelle Bishop:

If you don’t know that voice, that is Ian Watlington. He is a former staff member at NDRN who has moved on to bigger and better things. But is a advocate for disability rights and accessibility around the DC area, where we’re broadcasting from, who came to talk to us today about his experiences with taxi cabs and their failure to be accessible for people with disabilities. Ian, thank you so much for jumping on.

Ian Watlington:

It’s really good to be here and good to hear your voices again. And yeah, taxis and me are like oil and water, so that’s partly why I’m here to talk about it.

Michelle Bishop:

And unlike Stephanie, you don’t have a service dog. We did a spotlight story on a previous episode where Stephanie gets denied rides, not that this is okay, frequently because she has a service dog and they won’t put a dog in the car, what’s going-

Stephanie Flynt:

Because of my blindness, but that’s neither here nor there.

Michelle Bishop:

I told y’all she was going to get worked up. I warned you. So what’s going on with cabs? Talk to us about cabs in DC.

Ian Watlington:

Cabs in DC, I think there’s an epidemic going on. It’s called I don’t want to get out of my car syndrome. And it’s basically I feel like when I ask for a cab or am in a position to get a cab, they somehow remember some ancient program that existed some time ago. And please people, it still may exist in very limited form, but they always say, “Well, you need to get an accessible cab.” And I use a wheelchair and usually if I want to be spontaneous, which is often robbed from me by cabs and other issues with transportation in the district, they just don’t seem to want to get out of their cars. I think they honestly don’t know about disability and have some ignorance about that clearly. I don’t mean to downplay that, but it’s almost as if, first of all, they assume all wheelchairs are power chairs and can’t fold.

That’s one major generalization. And then again, like I was saying, they seem to remember this accessibility program, which there was, and it still may exist in name only, but where certain cabs were subsidized to be, they called them wheelchair cabs, but basically accessible cabs. And those you could be in your power chair, those were really convenient. I knew about three of them on the road and then gosh darn it, that COVID hit us and knocked those drivers for a loop. And so now there aren’t any accessible… Well, there are, but very, very few. And so the likelihood of you getting an accessible cab if you reserve one or such is very limited. And it’s very frustrating because like I said in the DCS article, which I’m sure will be in the show notes, as they say on podcasts, they’re just no chance to be spontaneous. You reserve them, they don’t show up. You try to get them spontaneously, they drive right by you or don’t want to get out of the car and tell you to get this mysterious accessible cab that maybe there’s one woman in the district driving that cab.

Michelle Bishop:

First and foremost, I’m pretty sure I have this syndrome that you talked about where you don’t want to leave your car. Is this diagnosable? And do I qualify if I do drive up orders for all my groceries?

Ian Watlington:

Is it diagnosable? I think there’s still a panel looking into it. It might be in the DSM-6, I’m not sure.

Michelle Bishop:

I’ll stay posted.

Ian Watlington:

But yeah, it’s under study and I need to warn Stephanie again, trigger warning, it exists with Uber and Lyft drivers as well. The idea of putting a chair in the trunk of a car is a little too much cardio for those drivers.

Michelle Bishop:

A sad commentary on the state of Americans and on many levels. What strikes me about this story as well is the extent to which there’s really nothing spontaneous about paratransit. You’re only supposed to go to your scheduled doctor’s appointments and you’re just not supposed to leave the house otherwise or have any sort of a life.

Ian Watlington:

Exactly. That is my exact, they do not understand how humans interact in a social setting. And so there is this expectation that you can always give 48 hours notice and you know the exact address of where you’ll be at 5:05 to 6:05 PM. In all seriousness, it’s ridiculous. And I know many people who they need one of the accessible cabs. They can’t rely on ride share as reliable as ride share is, but they end up having to take public transit to go to the doctor. It turns into a seven-hour adventure and that’s just ridiculous.

And the idea that people with disability can’t get any good transportation on spur of the moment is what I think one of the things people don’t understand, they go, “Oh, that person can’t walk, or that person can’t see. And big bummer on those fronts.” But if they knew that being disabled meant that their spontaneity would be seriously impaired itself, that’s another big bummer about being disabled, is that there is this assumption that you can program your life and that you certainly don’t have anything else to do, except plan your life around the transportation.

Stephanie Flynt:

Right? Heaven forbid we be employed or want to go to brunch with our friends or what have you. There’s a lot of stereotypes around disability. I remember seeing one tweet, I guess it was like five years ago, but somebody tweeted something super ignorant about how they don’t understand why people with disabilities are out of the house after 5:00 PM and before 9:00 AM and I cannot remember… Oh, this person I guess, was upset because they were towed out of one of the parking spots reserved for wheelchair users at 7:00 or 8:00 because of course, they’re reserved for people with wheelchairs to utilize them. And this person’s argument was like, okay, well then they shouldn’t be outside of the house at 7 or 8 o’clock. And I’m like, no. And the parking authority agrees with us, so your SOL.

Michelle Bishop:

They’re not gremlins, they can go out.

Ian Watlington:

Yeah, yeah. It’s amazing. Now, a little bit before 9:00 AM, I may have trouble, but 9:00 AM on that, I’m pretty functional. The before 9:00 is my own sleep hygiene. But let’s not talk about that.

Michelle Bishop:

Same, Ian, same. This has been fascinating. We’re definitely going to put your DCS news story in the show notes as you did accurately call them. And maybe we can link to a Gremlins movie in the show notes. I feel like we worked that in. Ian, thank you so much for joining us. It was such a blast to have you back. Please keep fighting a good fight and know how much we all miss you around the office. And we might get you to come do this again and maybe be a guest host with us if you’re up for it.

Ian Watlington:

That would be fabulous. I would enjoy that very much. And I miss you all, and you all are doing good work. We all are doing good work, but I miss NDRN, but excited about my new adventures. But thank you all for the invitation and I look forward to coming back.

Michelle Bishop:

Whatever your new adventures are, Ian, I hope you don’t need a cab to get there, but thanks for joining us.

Ian Watlington:

Thank you very much.

Michelle Bishop:

Well, I just want to say thank you to all of our amazing guests who joined us for this episode. Once again, happy New Year to all of you who are listening, who stuck with us through 2022 and into the new year, and of course, to our special guest host, Justice Shorter, who I just now assume is coming back from hiatus and joining us monthly, right, Justice?

Justice Shorter:

Oh, we should never assume, we know what that means when we assume things, Michelle. But I will always have the PandA Pod near and dear to the work that I do. You all are constantly getting the word out about pertinent issues that need to remain upfront and center in the work of the P&A network. And so I applaud the efforts of you and Stephanie, the PandA Pod continues to pump out phenomenal material on a monthly basis. So kudos to the two of you.

Michelle Bishop:

Well, it didn’t sound like a hard no, so we’ll go ahead and circle back on that later, Justice.

Justice Shorter:

Keep on circling, Michelle, keep on circling. That’s good, that’s good.

Michelle Bishop:

This is probably going to be your new favorite part of every episode and I say that really facetiously. Stephanie, do you have a joke prepared this month?

Stephanie Flynt:

I always have a joke. I always have a joke. I’m sure Michelle is rolling her eyes and she’s like, oh my gosh, please no, please no. Will you ever just one day not have a joke?

Michelle Bishop:

That’s what’s happening over here. Yes, I’m glad you understand.

Stephanie Flynt:

I’m here for this. See, I’m good at reading your mind or reading your language, even though I can’t see anything on the screen because we’re not on video, anyway.

Michelle Bishop:

I want to personally apologize to you for that because it’s kind of scary in here, nobody wants to be in this mind.

Stephanie Flynt:

It’s okay. It’s like, oh look, there’s a cobweb. Just kidding, just kidding. Okay, okay, well here’s my joke and I promise it’s not too scary. It’s actually a pretty smooth joke, if I do say so myself. But what do you call a criminal who steals a bunch of fruit, or someone who steals a bunch of fruit? Let’s not assume people’s guilt. Anyone have any guesses?

Michelle Bishop:

I’m so worried about where this is going.

Stephanie Flynt:

A smoothie criminal. Get it? Smoothie like you blend up the fruit and smooth criminal was a thing in the ’80s, right? [inaudible 00:52:34].

Justice Shorter:

All right, I won’t be back here, I won’t back here.

Stephanie Flynt:

Justice is like I’m coming back.

Justice Shorter:

I’m out.

Michelle Bishop:

Are you not aware that there was a Michael Jackson song? Like it was a huge-

Stephanie Flynt:

Oh, I thought that was something from Santana.

Jack Rosen:

What?

Justice Shorter:

Okay.

Michelle Bishop:

What? I’m so upset. Oh, this is the most upset I’ve ever been on an episode.

Stephanie Flynt:

I’m so sorry.

Justice Shorter:

Jack, end the episode. Close us out, what is happening?

Jack Rosen:

All right, anyway, thank you for-

Justice Shorter:

Hiatus extended indefinitely.

Stephanie Flynt:

Follow us on Twitter, like us on Facebook­–

Michelle Bishop:

No, no, I am up pulling up my music right now and I’m, after this episode, forcing Stephanie to listen to a whole lot of Michael Jackson.

Jack Rosen:

All right, and that was the last episode of the PandA Pod. It’s been a great journey, folks. For more, you can follow NDRN on Twitter, LinkedIn, Instagram, Facebook, maybe TikTok someday. And you can go to our website, www.ndrn.org.

Stephanie Flynt:

Disclaimer, producer Jack is lying. There will be lots and lots of episodes of the PandA Pod coming to your ears in the coming months.

Michelle Bishop:

Additional disclaimer, they just probably won’t have any more of these jokes.

Stephanie Flynt:

Mm-hmm, disclaimer, fake news. Jack’s like, please stop, I’m tired of editing already.

 

Michelle, Stephanie, and guest host LaToya Blizzard talk about what’s in the news. New NDRN Executive Director Marlene Sallo joins us to talk about her background and her vision for the network. Then Elizabeth Priaulx joins us to talk about the legacy of Lois Curtis. Should we have more sound effects? Let us know at podcast@ndrn.org

 

Transcript:

Michelle Bishop:

Hi everyone. Welcome to a new episode of The Panda Pod. Tis December, may I say Happy Holidays if you celebrate any of the million holidays that happens sometimes between Thanksgiving and New Years, whatever that is for you. I am one of your hosts, Michelle Bishop, the Voter Access and Engagement Manager at NDRN.

 

Stephanie Flynt:

And I’m Stephanie Flynt, one of your hosts as well, public policy analyst here at NDRN.

 

Michelle Bishop:

The Amazing Justice Shorter is still on hiatus, so we actually have another guest host with us this month. LaToya, please introduce yourself to the people.

 

LaToya Blizzard:

Hey y’all. I am LaToya Blizzard. I am the fiscal and management training and technical assistant specialist. Say that five times fast. And just a fun fact, one of the best things that I celebrate in December is me, because it’s my birthday month. So happy birthday to me.

 

Michelle Bishop:

Happy birthday, LaToya.

 

LaToya Blizzard:

Thank you, thank you, thank you. And my daughter’s birthday and my dad’s birthday. We celebrate literally all month, but I’m right in the middle of December, so I don’t have much money by the time January hits.

 

Michelle Bishop:

You and everybody else. Well we do have a very special guest who’s going to be joining us later in the episode, Marlene Sallo, our new executive director at NDRN is going to be talking a little bit about her background with the network and giving us a sneak peek of her plans for the future of NDRN and the P&As. But before we get into that, he’s yelled at me before for not introducing him. Let’s introduce our producer, Jack Rosen from NDRN. And Jack, what news stories do you have for us this month?

 

Jack Rosen:

Hello, this is Jack Rosen. I am the producer for The Panda Pod and I’m here to share what’s in the news. First up, disability advocates have been criticizing the media coverage surrounding Pennsylvania Senate candidate John Fetterman, who is a stroke survivor. Critics within the disability community have been saying that the coverage of him has been ableist, particularly the coverage around the use of closed captions.

 

Michelle Bishop:

I mean, yeah, this is the definition of ableist, right? Is it just me?

 

Stephanie Flynt:

Yeah, no, it definitely is. It definitely seems like the focus really and truly is just on his disability rather than his platform and whatever else. When you see Fetterman in the media, that’s all you’re seeing. You’re just seeing disability, you’re just seeing his disability being questioned. And I think for us it’s just a reminder that there’s still a lot for us to do. And while we’ve come a long way in some ways in society, we haven’t a long way in others. Because for starters, they’re questioning his fitness for office, which that’s kind of disgusting, that they’re doing that based on disability solely.

 

Michelle Bishop:

Well, and a lot of people have a stroke and go back to work. I mean, what do people think a stroke is? It doesn’t mean that you’re not necessarily not qualified to do your job anymore, even if you maybe just communicate differently.

 

Stephanie Flynt:

Exactly. Exactly.

 

Michelle Bishop:

Actually wait, it’s a good thing LaToya’s here, because LaToya knows a lot about employment.

 

LaToya Blizzard:

Because I am employed. Yes. So I do know a lot about employment. But first I just have to say that in following particularly this state and the Fetterman Oz running, I think that it has become this, and I don’t like to use this word, but the spectacle. And I don’t know that people have really been taking it as seriously as they should.

 

Michelle Bishop:

I like how you refer to it as basically being like elections theater. And I’m going to start stealing that and using that in the future.

 

LaToya Blizzard:

You’re welcome.

 

Michelle Bishop:

Thank you. Jack, what else do we have in the news these days?

 

Jack Rosen:

Workers, employers struggle as long Covid sidelines thousands of Wisconsinites.

 

LaToya Blizzard:

Yes. I got to say that’s probably not just in Wisconsin. I think Covid has definitely worked through the workforce in that it has taken down staff, and Covid is a tough thing to bounce back from. Speaking as a person that’s had Covid twice it was not as easy as I thought it would be to just get back up and get back into my normal routine, particularly when it came back to work. So I get that long Covid is a real thing. Covid fatigue is real.

 

Michelle Bishop:

I think I still have some Covid fatigue. I agree. But I think also, I mean I was looking at this article as well and the Government Accountability Office is saying that somewhere from eight to 23 million Americans nationwide probably have long Covid. I mean, that’s a big dent in the workforce. And long Covid strikes me as kind of an obvious this would be covered as a disability under ADA protections. Yeah?

 

LaToya Blizzard:

I think that it’s something to really be considered. I mean, COVID is new for us, so we’ve never had to encounter this and what the effects of it are. So I think we’re going to be dealing with this for a long time to determine how we view it, and if we could, should, would view it as a disability.

 

Stephanie Flynt:

Yeah, absolutely. And I think that it’s one thing that we were talking about a little bit more in 2020 when I guess you could say that the pandemic was more of a conversation piece. Of course we still talk about it some in 2022, but we don’t talk about it as much as we did in 2020. And I think with less conversations about it, we’ve been talking about long-term Covid effects less and less and less. I can tell y’all right now I’m with LaToya and Michelle. It literally took me three weeks to not have to take a nap at least once a day after Covid. It was just a thing.

 

LaToya Blizzard:

So I lowkey think that I may have had long Covid before Covid was a thing because I struggled with getting to work [inaudible].

 

Stephanie Flynt:

Retweet.

 

Michelle Bishop:

Agreed. Jack, what else do we have in the news?

 

Jack Rosen:

So Disability Rights Michigan created a page for the public to track their litigation. You can find that at www.drmich.org/services/advocacy-litigation.

 

Michelle Bishop:

I love this. I wish all the P&As would do this. Shout out to Disability Rights Michigan. We’ll include the link when we push out this episode as well for you guys to check out. Because I just don’t know that our network gets enough credit for the litigation work that we do. I even talk to people I know personally outside of work who are familiar with some of our major legal victories and I don’t think they even know it was the P&A that did it. I love this idea of just putting our work out there. Shout out to Michigan for tooting their own horn on this one. I love it.

 

Stephanie Flynt:

Yeah, absolutely. And I love that this resource is something that hopefully other P&A agencies can kind of use as a model and hopefully create similar resources. It’s like you were saying, Michelle, I feel like the P&As don’t often get enough credit for the legal victories that the network gets. And so I think that that is super, super important, and I think that having that as a resource not only helps with credit, but also just helps the general public, whether it be folks in the P&A state or whether it just be people in general who are doing research, keep track of legal matters when it comes to the protection and advocacy agencies.

 

LaToya Blizzard:

Agreed, Stephanie. I think that this website that they’ve put together is definitely going to be something that can be used all over, and as we do more systemic work and even as the P&AS come together and collaborate, we already know that there’s standings that are available. There’s legislature that’s already out there and we can easily get to it without having to dig too far into a book, we could just go to the website and get the information that we need.

 

Michelle Bishop:

I’m here for it. Well, shall we turn our attention to Marlene and have a conversation with our new executive director? You guys ready?

 

Stephanie Flynt:

Let’s do it.

 

LaToya Blizzard:

Absolutely.

 

Stephanie Flynt:

Alrighty. So we actually have a very special guest with us right now on the NDRN podcast. We actually have a new executive director for those of you who may be lying underneath a rock. She joined us back in October. Marlene Sallo. Marlene is the first woman and the first Latina and first person with a disability to lead NDRN.

Prior to joining NDRN, she served as the director of preventing targeted violence at the McCain Institute for International Leadership. She previously served for almost four years as the executive director of the Massachusetts Disability Law Center. Marlene was appointed by President Obama to serve as the staff director for the US Commission on Civil Rights in 2013. She later worked for the Obama administration at the US Department of Justice Community Relations Service as chief of staff and senior council. She has a BA from Manhattanville College and a JD from Florida State University. Marlene, thank you so, so much for joining us. We are super, super happy to speak with you today. How are ya?

 

Marlene Sallo:

I’m doing great. Thank you for hosting me today on your podcast. I look forward to it.

 

Stephanie Flynt:

Awesome, awesome. So I’m going to go ahead and hand it over to Michelle for our first question.

 

Michelle Bishop:

So Marlene, you were actually no stranger to the network. Can you tell us a little bit about your history with the P&As?

 

Marlene Sallo:

Absolutely. I joined the Florida P&A back in 2007, and I served as an education attorney with the Florida P&A. Loved that job while I was there, actually set up an educational advocacy program in the Unified Family Court to advocate for youth who are going through either the child welfare and/or the juvenile justice system who also had an IEP and required special services to advocate on their behalf in the courtroom.

I ultimately relocated to South Carolina and left the P&A system, and then came back full circle and became the executive director of the Massachusetts P&A in March of 2018, where I served for almost four years there. A great job, but unfortunately I had to leave Massachusetts and return to Washington DC, and now I am here at NDRN. So I bring the experience at the staff level as well as an ED level from one of the P&As, and I bring all of that to the table now, serving as the ED for NDRN.

 

Stephanie Flynt:

Wow, that’s awesome. Thank you so, so much for sharing that with us. So one thing that we have been very fortunate to witness as staff is to see the enthusiasm that you have about the network and about your new role here at the network. So I would love for you to talk about that a little bit more on the podcast for our listeners. What about the network really gets you going? What sparks your passion for disability rights work?

 

Marlene Sallo:

My passion was originally sparked as a result of my serving as a special education teacher, which ultimately got me into the advocacy realm. Even when I went to law school, I knew that I wanted to represent the rights of youth with special education needs. So I worked very closely to represent the rights of dually involved youth going through not only the child welfare system, but the juvenile justice system. And I found my sweet spot when I joined the Florida P&A in their education advocacy department. I was able to bring that experience and my passion for representing youth as an appointed defense attorney or even as a state appointed child welfare attorney to the P&A. And there I was exposed to so many great advocates and litigation attorneys that had the same passion that I had, which was to advocate for the rights of all youth with disabilities across the US, and how could we really join forces and amplify the work that we were doing.

That is the passion that I bring to the table here at NDRN. But more so it’s the ability to see the great work that’s being done on the ground across all 57 P&As. Where I know that we’re all fighting for the same thing, is to ensure that the rights of people with disabilities are enforced, to amplify the great work that each of us is doing in our respective states, and to also make sure that we are the voice, at least from an NDRN perspective, up on the hill to ensure that the protections continue to remain in effect and that any protections that currently exist for people within our community are expanded upon. And then let’s work to ensure that other protections are put in play. So I believe that we’re all working for the same objective. We’re all working to improve outcomes, and at the same time we all bring that same passion based on our specific areas that we’re working on.

But it’s a big family in the way that I view it, and that’s what makes me the most passionate is that I come to work every day knowing that we’re all in this together and we all have the same vision and the same passion to advocate for the rights of all people with disabilities nationwide.

 

Michelle Bishop:

Yes. Get the people fired up for disability rights this morning. I love it. But let’s keep it real for a moment. NDRN getting a new executive director is kind of a big deal. The current, Decker, finally retiring is kind of the end of an era. I still talk to people every day who are surprised he actually finally took that leap and retired. Curt, I hope you’re on a cruise ship somewhere right now, living your best life. But does this moment feel significant to you as you step into this role?

 

Marlene Sallo:

It is extremely significant. And might I add that I did meet with Curt in September and Curt had just returned from a cruise. So we know he’s living his best life.

 

Michelle Bishop:

That’s amazing.

 

Marlene Sallo:

It is extremely significant because I understand the significant role that Curt played in the establishment of NDRN and all of the contributions that he’s made for the past almost 40 years, you can’t take that away from him. And so I’m honored to be able to continue the work that he’s done and to build upon it.

I don’t believe it hit me just how significant it was until recently. And then it was like, whoa, this is bigger than I allowed myself to envision it was. And I think that’s a good thing. If I had really pondered about how significant his position is, I might have been a bit more nervous than I was during the interview process, but I felt comfortable in the sense that I had been part of this network and it felt like coming home.

And so the significance is that I am following all the great work that Curt has done and I’m being given the honor to continue leading the charge as it applies to the great work that all of the advocates across the US are doing. But at the same time, I understand that being the first woman, Latina, and first person with a disability leading this organization also adds an additional layer of just knowing that I have work to do and there are people out there that are looking to see how I navigate these waters and how I best represent them. And I am honored to be able to lead NDRN, and I give my all and will continue to give my all every day to ensure that I amplify the work of all of the P&As. But at the same time, I’m advocating for the rights of all people with disabilities.

 

Stephanie Flynt:

That is awesome. So it’s been really, really cool to see the values that you hold for this organization and how you’ve been so far working to help inspire the staff and your collaborative approach. And that’s just been really, really cool to see. I know our listeners are probably curious about this, and I’m not totally sure how much you can share, but of course we would love to know about any big plans you may have, if you can give us a sneak peek, like a preview of any changes or new projects that you’re hoping to see through fruition, just different things that you may want to take on in the next few months.

 

Marlene Sallo:

Well, the thoughts continue to brew and the plans continue to slowly manifest themselves. But what I will say is that I bring a certain passion for certain issues that I would really like to continue working on. I am a big proponent of universal design. And so how do I weave that into the work that we will be doing moving forward is something that I’m currently debating. I am a big proponent of voter protection, and so I know that we’re big in doing that work. How do I keep supporting that and expanding upon it? And I am extremely concerned about the other side of Covid, if we can even say we’re on the other side, how that is affecting short-term and long-term access to healthcare. And just from a public health perspective, how do we plan accordingly so that we can respond quicker and in a more uniform fashion if sometime in the near future we have another virus or another outbreak or another activity that happens within the public health realm that affects our community in a negative manner.

And so how do we prepare for that? How do we forecast what the future may hold for us moving forward? And how do we prepare accordingly, not only at NDRN, but across the network? And so all of those things remain front and center in my mind. In the next few months, I will be weaving that into a work plan. And if you join us at the annual conference that we will be having next year, I will be unveiling my thoughts and my objectives for NDRN moving forward.

 

Michelle Bishop:

That’s exciting. I love the plug for the annual conference. Yes, everyone please come and join us. This has been amazing. Thank you so much for joining us on the podcast. We’re so happy to get to help introduce you to the network. Is there just anything else, any other messages that you’d like our listeners to hear today? Knowing that the folks who check out this podcast are working at the P&AS all over the country.

 

Marlene Sallo:

I just say thank you for all the work that you do on a daily basis to advocate for the rights of people with disabilities. I am here to support you. I’m here to amplify the work you’re doing. And just know that we all know, but we continue to let the public know that disability rights is civil rights. And as long as we work together to bring that forward, we will be able to continue doing the great work that we’re doing and amplify and build upon what we’ve done thus far. And I look forward to working side by side with you on this continuous advocacy journey.

 

Michelle Bishop:

Thank you so much. Thank you for joining us on The Panda Pod. We loved having you. And of course, if you ever want to come back and talk about any of these issues, you know you’re welcome anytime now.

 

Marlene Sallo:

Yes, thank you. I will be reaching out.

 

Michelle Bishop:

We love it. We’re always looking for new topics to talk about on The Panda Pod. Thanks so much.

So every month on this podcast, we have a spotlight story where we look for people with disabilities to tell their own stories about our struggles in the disability rights movement. And this month, y’all, we have a very important but a bit of a sobering spotlight story. Recently, if you haven’t heard Lois Curtis actually passed away, a really important figure in the disability rights movement. Lois, you will be missed for sure. For people who don’t know her story, we actually asked Elizabeth Priaulx from NDRN to join us this episode as our resident expert on Olmstead. Is that true, Elizabeth? Did I just make that up?

 

Elizabeth Priaulx:

I love being called the resident expert on Olmsted. I am our resident expert and I’ve been very lucky to know the story of Lois Curtis and Elaine Wilson.

 

Michelle Bishop:

Can you tell us a little bit more about Lois’s role in Olmsted and what that meant for the disability rights community?

 

Elizabeth Priaulx:

Sure. Absolutely. Lois Curtis and Elaine Wilson were living, they both had intellectual disabilities and mental illness diagnoses, and they were living in an institution, and they had lived there most of their lives. They became aware of a group of people in Atlanta or in Georgia where they were, who were able to get community-based services. And they checked with their medical professionals, and the medical professionals said, “You would be absolutely appropriate for community-based services.” But when they requested it of the state of Georgia, Georgia said, “If you want to keep receiving Medicaid, you have to live in an institution.” And they said, “Well, why are some people living in the community and receiving Olmstead?” And the state said, “Well, we just have a very small program.”

So Lois Curtis and Elaine Wilson were identified by the Atlanta Legal Aid Society, and they said, “I’d like to live in the community. My doctor said I’m appropriate for the community, and they’re telling me that if I want to stay on Medicaid, I have to stay in this hospital.” And Sue Jameson from Atlanta Legal Aid and her staff said, “Well, we can work to get you out.” Well, as in most states, there’s a long waiting list for community-based services in Georgia and it didn’t look good. And what Atlanta Legal Aid did was say, “You should expand your community-based program so more people could go in the community.” And the state said, “We don’t have the funding for that. It’s not how we run our program.” And they went to court. They filed a civil action, not even a class action, civil action on behalf of both Lois Curtis and Elaine Wilson. And they argued that the Americans with Disability Act says that programs and services should be run so that individuals can live in the most integrated settings appropriate to their needs. So it was a violation of the ADA to not provide more programs in the community.

So their case went all the way up to the Supreme Court and the Department of Justice filed on behalf of Lois Curtis and Elaine Wilson. And what was so wonderful about this was I think that in the beginning there were 28 states that sided with Georgia, that the Americans with Disabilities Act did not require the states to provide more services in the community or services in the most integrated setting. And because of tremendous grassroots organization, and national disability rights was part of this, almost every national disability agency that you can think of was a part of the grassroots and National Disability Rights Network signed on to an amicus that was filed by different state attorney generals, even, in support of their arguments. And as a result of this grassroots, a very large percentage of State Attorney Generals decided to come off the brief in support of Georgia.

So this showed the power of the disability community. And that’s one of the things I love when I think about Olmstead VLC. And it went all the way to the Supreme Court. And in a six to three ruling, Supreme Court said, “Yes, the state is required to provide services in the most integrated setting appropriate. However, there is a provision in the ADA that says that if a state can show it is a fundamental alteration and it disrupts the state’s ability to provide services to the whole disability community equally, then they can argue that it is not something they need to do.” And what Justice Ruth Bader Ginsburg said in her opinion was, “We understand that the state won’t be able to instantly move people out into the community. We don’t have the infrastructure for that yet. You need to develop programs and services. So we will allow states to develop a plan for how they are going to move people out at a reasonable pace and develop the community services necessary so that people could live safely in the community.”

So that is the story of Olmsted. And one of the reasons that I love to think about Lois Curtis and Elaine Wilson, they were African American women from the South who just pushed and pushed and said, “Why can they and not us?” And to me, “Why can the people live in the community and not us, why is it such a small amount?” That to me is a definition of somebody standing up for their rights and asking why is the world the way it is? It doesn’t need to be this way. So I think about her and Lois and I think about the grassroots that made this decision come about. And sometimes I would like to think about what the world would be if there hadn’t been courageous people to bring Olstead BLC. We wouldn’t have the expansion of community based services that so many of us rely on for the past 20 years.

 

Michelle Bishop:

That’s incredible. I mean, that’s just truly life changing for so many people with disabilities. Actually, and we talked to Lois, Jack, correct me if I’m wrong, two years ago when we did our disability rights and Black series on social media for Black History Month, we talked to Lois. I think we have a clip.

 

Jack Rosen:

We do. Let me play that for you.

 

Lois Curtis:

My name is Lois Curtis, happy Black History Month. I’m glad to be free.

 

LaToya Blizzard:

Shout out to Lois for being a trailblazer for people with disabilities. I think that as I was reading in this, it’s a part of history, the disability rights history, but at the same time that was not that long ago. We’re talking, what, 1999? Not that long ago that the judges decided that, oh yeah, you should have space in the community to live. And it’s beyond me to think that just, what, 20, 23 years ago that we were thinking about that. 23 years ago I was in college and I had no idea that all of this was going on around me. So shout out to Lois for advocating for herself, for sticking it through, and truly overcoming all the obstacles of being a Black woman in the South with disabilities, but still wanting a better life for herself and not just conceding to the, well, this is just the way it has to be.

 

Michelle Bishop:

All she put out there was, “I am glad to be free.” If she didn’t pick the single most important thing she could have said, it’s fine. I’m fine. I’m not crying, you’re crying, LaToya, whatever. I’m fine.

 

Speaker 8:

I feel like that honestly sums up the accomplishments, the grassroots accomplishments of Lois and Elaine perfectly. I feel like those two words, that sentence is just the perfect summary.

 

LaToya Blizzard:

And it’s the sentiment of so many others that were impacted by this decision.

 

Michelle Bishop:

Honestly, y’all, I think this is the perfect way to pay tribute to someone who was part of such an instrumental change for so many people with disabilities. And other than that, roll into the holidays and come back after the new year with a new episode of our podcast and a renewed fire to make sure everyone is free, because none of us are free until all of us are free.

 

LaToya Blizzard:

So thank you for having me. I really enjoyed it. Feel free to invite me back anytime.

 

Michelle Bishop:

LaToya, it was such a blast to have you on the show, and I’m so glad we talked about issues around work and employment, and you are my guru for all things good leadership and management. So it was so cool to have you here.

 

LaToya Blizzard:

You’re so sweet. I’m sending you hearts right now. You can’t see it, but I’m actively sending you hearts.

 

Michelle Bishop:

LaToya, I can see it with my mind’s eye. If you also don’t know LaToya’s basically my unwitting life coach at this point, if you ever go to her workshops at the annual conference, and she’ll do this great stuff about work life balance and mindfulness. And now she doesn’t know that she’s my life coach, but she is.

 

Stephanie Flynt:

So speaking of sweet things, can I tell a joke?

 

LaToya Blizzard:

Please.

 

Michelle Bishop:

Oh no.

 

Stephanie Flynt:

Aw, yay. See, LaToya likes my jokes. This is why she can come back anytime. Yes. That is a requirement if you’re going to guest host. Anyway.

 

Michelle Bishop:

Hit us with a joke.

 

Stephanie Flynt:

What do you get blind people for the holidays?

 

LaToya Blizzard:

What?

 

Stephanie Flynt:

Candy canes.

 

Michelle Bishop:

Oh my gosh.

 

Stephanie Flynt:

Sorry not sorry.

 

Michelle Bishop:

Do we have to put a disclaimer on that one for our listeners?

 

LaToya Blizzard:

Oh my gosh.

 

Michelle Bishop:

Given that this is an audio only broadcast, I just want to go ahead and make sure all of our listeners know that Stephanie is blind, so she has somewhat of a pass to tell that joke. All right? Don’t add us. Don’t send us angry emails.

 

LaToya Blizzard:

Oh gosh.

 

Stephanie Flynt:

Yes. I’m very blind. If you need proof, we’ll figure out how to get it to you.

 

Michelle Bishop:

That reminds me, I think our new email is up and running, y’all. We have an email address, podcast@ndrn.org, so if you have ideas for future episodes or you want to be featured as a guest on our podcast, feel free to email us, podcast@ndrn.org.

 

LaToya Blizzard:

And shout out to you, Michelle and Stephanie, for holding down the podcast. It’s been great for sure.

 

Stephanie Flynt:

Thank you, LaToya.

 

Michelle Bishop:

Now you’re going to have to come back. You’re coming back. LaToya.

 

LaToya Blizzard:

Listen, I’m trying to butter you up. I’m trying to get a spot here.

 

Michelle Bishop:

Are you trying to get a gig? Was this an audition? Consider yourself hired.

 

LaToya Blizzard:

Low key. I got my podcast voice on and everything, so I’m ready for it.

 

Stephanie Flynt:

Email us about whether you want LaToya on the podcast, also known as email us if you know that LaToya should come back. If you don’t, then don’t email us.

 

Michelle Bishop:

I know, we don’t accept LaToya hate in our email.

 

Stephanie Flynt:

Yeah, exactly. No negative emails, please, only good vibes.

 

Michelle Bishop:

Only good vibes in our email. And what about our socials, Jack? Hit us with the social media.

 

Jack Rosen:

And you can follow us on Twitter, Facebook, Instagram, and LinkedIn. You can also follow us on TikTok, but we do not post there currently. But you can follow us. To learn more about the work we do, visit www.ndrn.org.

In this edition of the Panda Pod, guest host Erin Haire joins us as we sit down with Marcia Johnson-Blanco. Then we are revisited by a friend of the pod.

Learn more about The Election Protection Hotline by calling 866-Our-Vote or visiting www.866ourvote.org.

Learn more about the ASL Voter Hotline by calling 301-818-VOTE or visiting www.nad.org/voter-information/

 

Transcript:

Michelle Bishop:

Hi everyone. Welcome to episode two of the new, the improved, The Panda Pod, your one and only podcast for the P&A network. This is Michelle Bishop, one third of your hosting team.

Stephanie Flynt:

And I’m Stephanie Flynt, one of the two thirds of your hosting team coming from my closet.

Michelle Bishop:

I don’t know if you had to tell people that, but yes. And just as shorter, unfortunately, our third host is on a little bit of a hiatus, but we have a very special guest hosting with us today. Erin, tell the people who you are.

Erin Haire:

Hi everyone. I’m Erin Haire. Happy to be the third hostess with the mostest. I am the voting rights specialist here at NDRN and happy to chat about all things voting with you guys.

Michelle Bishop:

Does it sound like the voting team at NDRN is taking over this podcast?

Erin Haire:

That’s the way it should be.

Michelle Bishop:

I agree.

Stephanie Flynt:

No one voted on that.

Michelle Bishop:

Oh, sick voting burn. I respect it, Stephanie.

Stephanie Flynt:

But I burnt myself too, so it’s okay.

Michelle Bishop:

Well, actually this episode is going to be all about voting because today is November 1st, which means that if you have not voted yet, you have one week left to get the job done. Midterm elections are coming up on November 8th, so we are going to be talking all things voting on this episode. We have a special guest today who’s going to be talking to us all about the Election Protection Coalition and options for voters who have difficulty voting on election day. We’re going to have a really cool spotlight story from a very special top secret guest who used to be a poll worker. And before we can get to all that, let’s talk about P&As in the news. What are the hot topics going on lately?

Jack Rosen:

Okay. And I’ll pull that up. And in the meanwhile, Michelle, do I just not get an intro anymore?

Michelle Bishop:

Do we intro? Wait, can we vote on this? Who thinks we should intro Jack, our producer?

Stephanie Flynt:

Aye…oh wow I’m all alone.

Michelle Bishop:

Did we not vote on that? This is little awkward.

Erin Haire:

I’m affirmative.

Stephanie Flynt:

Okay, good. Exercise your right to vote, ya’ll. That’s like the whole –

Michelle Bishop:

Jack Rosen with our communications team, our digital communications specialist, Senior Digital… Jack, what is your title? I can’t introduce you.

Jack Rosen:

Senior Digital Communications Specialist.

Michelle Bishop:

I was very close. In my defense, I was very close.

Stephanie Flynt:

I was like, this is so suspenseful.

Michelle Bishop:

Wait, I’m sorry. Stephanie, do you not have major news for us right now?

Stephanie Flynt:

Yes, you could call it major news. I’m going to start over.

Michelle Bishop:

A little bill that maybe got signed into law recently. I’m just saying.

Stephanie Flynt:

Well, after working on this legislation for some time now, I’m super excited to announce that the PAVA Inclusion Act is now the law of the land. Now, for those of you who may not be familiar with the PAVA Inclusion Act, essentially what happened was the Northern Marina Islands and the Native American Consortium we’re not included in the allocation of PAVA funding for the past 20 years. And so we were finally, finally, finally able to get PAVA amended so that they can be included in funding this fiscal year. So super excited about that.

Michelle Bishop:

Woo woo. Yes, PAVA Inclusion Act. This is Michelle and I just want to say to Native American Disability Law Center, the Northern Marina Islands, if you haven’t heard from me yet, you’re about to. Please tell me how I can provide you training and technical assistance for your brand new PAVA program. Woo woo. I’m so excited. Also, any bill that passes, any voting bill in particular that passes unanimously out of Senate, deserves to get signed.

Erin Haire:

And it’s a humbling reminder of how it might take 20 years to correct one instance of some legislative oversight. So it’s an exciting lesson for us all working in policy.

Michelle Bishop:

How a bill becomes law, I guess.

Stephanie Flynt:

Cue the Schoolhouse Rock music.

Michelle Bishop:

Oh, we need new intro music.

Jack Rosen:

We do not have the rights to that music, Stephanie.

Michelle Bishop:

Oh, Jack, this is why you don’t get an intro.

Jack Rosen:

Don’t even say the word schoolhouse. Don’t say rock.

Stephanie Flynt:

Disclaimer. We do not have the rights to this music. Any references to this music being on this podcast is…

Michelle Bishop:

Stephanie has a great disclaimer voice.

Stephanie Flynt:

Thank you. Thank you. If we ever need to record any disclaimers, I’m happy to do that. I can even record a disclaimer about me saying chicken nugget. So we’ll need that.

Michelle Bishop:

Yeah. You haven’t recorded any episodes with Justice yet, so I promise you we will need some disclaimers.

Stephanie Flynt:

I can totally help with that. I love doing that kind of thing. It’s so much fun. I did a lot of practicing when I was 11, so I was born for this.

Michelle Bishop:

All right. What else do we have in the news, folks?

Jack Rosen:

All right. Also in the news, Senator Duckworth and Representative Sarbanes introduce bill to make websites and mobile applications accessible to individuals with disabilities.

Stephanie Flynt:

Wow. Yes. We are super excited about this. Now, essentially this project started in… It’s crazy to think that it started back in January of 2021. The National Federation of the Blind originally started to spearhead this project and now are working with and have been working with the American Council of the Blind and of course the National Disability Rights Network and the American Foundation for the Blind. So super excited to see the community come together to work on this legislation and just make sure that it is going to benefit all folks with disabilities. Folks who utilize stream reading technology. I can tell you right now that there are times when I have taken, for example, a ride share somewhere. I may go outside two hours later after whatever event and request an Uber only to find that the app has been updated and all of a sudden isn’t accessible. So a lot of these instances have happened and of course instances like that have happened on websites where I cannot tell you how many times I’ve had to go through and use different browsers for different websites and still haven’t come to a solution. So definitely a step in the right direction, and I hope to see this. I know that this is going to make change sooner rather than later.

Erin Haire:

This is also very exciting for us in the voting field because voting advocates are constantly telling folks check your registration online, check the status of your ballot online. And some of those state voting websites, the election websites are not accessible. So this would be a huge victory for us in the voting field as well.

Michelle Bishop:

The slow voting take over of the podcast. You see how we slip that in there? The voting take over of the podcast. It’s coming. If NDRN wants to stop us, then they’re going to have to start putting up some other host, cause we’re taking over.

Stephanie Flynt:

Is this where we insert a poll to see if we should take over?

Michelle Bishop:

We do love voting. Jack, anything else going on in the network?

Jack Rosen:

In Illinois, a class action lawsuit has been filed in the Cook County Circuit Court against a nursing home operator. This lawsuit has been filed by AARP and Equipped For Equality, the Illinois P&A is part of the lawsuit.

Michelle Bishop:

Part of a class action suit? That’s pretty amazing, actually. I don’t want to say that I don’t know a lot about class action lawsuits, but I have seen Erin Brockovich, so I’m pretty much an expert on this.

Erin Haire:

I think so.

Michelle Bishop:

Thank you to Erin who has a lot of [inaudible] for backing me up on that.

Erin Haire:

The basics. You get a good rundown.

Michelle Bishop:

That’s amazing. Shout out to Barry Taylor in Illinois who is just incredible and leading the charge. We appreciate you.

Erin Haire:

And we know that this stuff is happening in every other state. Every other state that has a P&A is finding abuse and neglect instances and we’re hopeful that litigation like this will shed a light on those other states and encourage them to do the same.

Michelle Bishop:

That’s amazing. Should we get to our special guest today and start talking Election Protection?

Stephanie Flynt:

Let’s do it.

Michelle Bishop:

All right.

And our very special guest today is actually Marcia Johnson Blanco, who is the co-director of the Voting Rights Project at the Lawyers Committee for Civil Rights Under Law, where she manages multiple projects around voter engagement, census engagement, and voting rights. Having earned her JD at Villanova, Marcia has testified before Congress, is featured in the international documentary Democracy Maybe, and her essay on voting rights is part of an exhibit at the National Center for Civil and Human Rights in Atlanta. Notably, Marcia organized two national commissions that documented discrimination and voting for Congress and served as a member of the litigation team to defend the Voting Rights Act when its constitutionality was challenged in 2007. And you all know we’ve been talking a lot about the Voting Rights Act the last couple of years when it comes to that right to voter assistance. Marcia also oversees the work of Election Protection, the nation’s largest nonpartisan voter protection coalition. And that’s actually what we want to chat about with her today. So Marcia, thank you so much for joining us.

Marcia Johnson-Blanco:

Thank you so much for having me. NDRN is a valued partner of the EP coalition. So glad to be here and talk about our collective work.

Erin Haire:

Marcia, thank you so much for being with us today. I’m thrilled to learn a lot about your organization and I know that we have some newer voting rights advocates and attorneys in our network. Would you just start by giving us a rundown of what Election Protection is?

Marcia Johnson-Blanco:

Yes. So Election Protection was first established in 2001 after the 2000 election, which seems like a lifetime ago, but if you remember, it was a close one decided by the Supreme Court, and really whether this looked at whether votes in Florida would be counted. At that time, there was a very aggressive program against keeping voters off the roles, accusing those who didn’t have felony convictions of having felony convictions or just making it harder for voters to actually vote on election day. And so what the civil rights community realized is that there was a need to have a program on election day to provide assistance to voters. And out of that came the Election Protection coalition, which has grown into a coalition of over 300 national and state organizations who work with voters to make sure they have the access to the ballot and to have that ballot counted and then to, now, [inaudible] and to make sure that that count is not nullified by political partisans.

It also consists of a suite of voter protection hotlines. The Lawyers Committee administers the 866-Our-Vote hotline, but there’s also the 888-VE-Y-VOTA hotline that’s administered by NALEO Education Fund and that’s the Spanish and English hotline. And then we have the Asian languages hotline 888-API-VOTE, and then the Arabic language hotline, 844-YALLA-US. And we sometimes partner with other hotlines, which is something I know we talked about before. The hearing impaired hotline as well. So the hotlines are a way for voters to get questions answered about the voting process as well as reporting problems that they face when voting. In addition to the hotlines, there’s very active infrastructures across the states. Right now we are in more than 30 states where there are poll monitors at polling places helping voters to be able to vote as well. So it’s a vast undertaking that has grown tremendously over the years and which we are now proud to say is a fixture in our elections landscape, but also disheartened that it’s still really needed more and more because of the ongoing challenges to the vote.

Michelle Bishop:

Okay. The 2000 election, as much of a debacle as that was, it’s a little bit the gift that keeps on giving. Election Protection coalition, shout out to the Help America Vote Act. You mentioned the hotlines and that’s great. We’ll make sure that the hotline information goes out with this podcast episode today so that folks have access to that. But I was wondering, what options do voters have for contacting Election Protection? What are your options on election day, during early voting, or maybe any other day of the year? Can people call the hotlines and do they have other options? I know in the past sometimes you’ve been able to chat with someone through the website or text a volunteer.

Marcia Johnson-Blanco:

Yes. And so, Michelle, sad to say it’s not just about election day anymore. So I’ve been training myself to say the voting period.

Michelle Bishop:

So true. It’s so true. I’m not good at that at all. I have to practice too.

Marcia Johnson-Blanco:

So you right. Right now, voters can call the hotlines. The 866-OUR-VOTE hotline is currently answering calls live from 10:00 AM to 7:00 PM regionally. And so that one means no matter where you are in the country, we are open until 7:00 PM local time. Can call right now. And then those hours will be extended as we get to closer to the election day. And then during election day, all the hotlines are going to be answering calls live during polling hours. It’ll basically be for the 866-OUR-VOTE hotline. It’ll basically be from 5:00 AM to midnight Eastern Time. And so yes. Right now, you have a question particularly about the process, particularly given that states have changed the rules since 2020, you’re making a plan to vote and you need to know, do I need an identification? Any of that information, please call now. Trained volunteers that are available to help. And as you mentioned, Michelle, in addition to the calling, you can access the 866-OUR-VOTE hotline via text, 866-OUR-VOTE, text 866-OUR-VOTE. We’re working on getting our short code. Didn’t realize it was such an administrative nightmare to do, but we’ll get there over time. But right now you can text 866-OUR-VOTE. And then there is also through the website, 866ourvote.org. There’s a web chat function. So yes. All the ways to get in touch with us.

Michelle Bishop:

Okay. I know Stephanie has a question for you, but I have to interrupt and ask, can you also hit up Election Protection on social media? Can you tweet at us? Or this brings me to the really important part. Can you TikTok at Election Protection? Because Stephanie is a known disabled TikToker.

Marcia Johnson-Blanco:

We can’t now TikTok while we’re looking at all the platforms to be able to engage folks. Stephanie, I may need to follow up with you afterwards to figure out how we do that effectively. We are on Twitter, 866 Our Vote, and we are on Facebook, 866 Our Vote. We have a Instagram presence, but we are trying to get better about our social media engagement. We’re good on the older platforms, but working to improve our presence on the newer ones.

Michelle Bishop:

I look forward to 2024 when there is a viral Election Protection TikTok dance. Okay. I’m sorry, Stephanie. Take it away.

Stephanie Flynt:

Yeah, no, for sure. And before I ask my question that I have for you, I just want to commend you and applaud you for coming up with these multimodal ways and trying to make sure that, for starters, things are in multiple languages, but also there are multiple ways so that individuals can contact you. And I can tell you right now that in the disability community, for us, that is extremely crucial, and of course knowing that other minority groups intersect with folks in the disability community. But all that to say, I’m curious to know what kind of calls, text messages, Tweets, Instagrams, all the things, what those kind of reports do you receive and what have been some of your most concerning reports that you’ve known of?

Marcia Johnson-Blanco:

Yes. So it depends on what type of time of year it is what type of calls we get in. So right now we are getting the how do I access the process type of calls. We encourage folks to call to verify their voter registration. This is something we really emphasize because a lot of times when voters encounter problems at the polling place is because they may not be on the rules. And the reason they may not be on the rules is because there’s an issue with their voter registration. So try to take care of that on the front end. And we particularly push that because unfortunately we’ve gotten the saddest calls is when someone calls and said, I went to vote and I was turned away because I was not on the roles. And we always start with, oh, let’s check your voter registration. When did you register? And hear I needed to register in order to be able to vote?

So it’s part of that voter education and the basics. But apart from the process and the concerning calls are those who did what they were supposed to do. Either showed up at the polling place or requested their vote by mail absentee ballot in a timely manner and could not vote through no fault of their own. So it could be I show up at my polling place and it’s not open and this is the only time I have to vote before I have to go to work and I can’t stick around and wait, we’ve gotten those calls. Or I’ve shown up and the equipment isn’t working and either the poll workers haven’t been instructed to use alternative ways for me to be able to vote, or I need access to equipment that isn’t available for me to be able to vote independently.

Other concerning calls are around absentee ballots where the ballots were not received on time through no fault of the voter or have been rejected because of signature mismatch. And unfortunately, states like Texas and Georgia since 2020 have passed these really restrictive laws around absentee ballots where your signature has to match exactly as it appears on your voter registration. Do I remember how I signed my voter registration form? I do not. Having done so so long ago. And then we have these so-called handwriting experts in the elections offices who are making the judgment that there’s a signature mismatch. And because of that, we’ve seen in the primaries this year, particularly in Texas, that has passed this really restrictive laws around vote by mail. It was a 13% rejection of absentee ballots where in past primaries it was 2% and it had to do with the signature matching aspects there.

Also, we’ve seen a rise in calls about intimidation at polling places and it’s really difficult because they’re people who are outside of the electioneering boundaries who are harassing voters. And then one of the feedback, well they’re outside of the electioneering boundaries, and yelling at voters, admonishing them, getting in their face when they’re trying to vote in a very aggressive manner is not acceptable. What do we do about that in lots of our communities? Calling the police is not seen as a viable option because having a police presence doesn’t necessarily make people in the communities feel safer. So that’s a challenge that we are facing. And then I would say on the voter assistance side of things, we’ve gotten calls where voters were denied their assistance of choice, were denied access to curbside voting, for example. And then also for voters who need language assistance, their eligibility to vote being questioned because they asked for assistance to be able to vote either in their language of choice as required under the Voting Rights Act or just needing someone there to help them with being able to vote. So that’s the gambit of lots of concerning questions that we get to the hotline.

Stephanie Flynt:

Yeah, absolutely. And it’s interesting, as you were talking, I was like, I want to comment on this, I want to comment on this. And then I realized I probably could take up the entire rest of this episode plus four or five more. But what I will say is that clearly something needs to be done because, regardless, this is a universally problematic issue across so many minority groups. I know that Erin has another question for you as well.

Erin Haire:

All these extremely concerning calls that you are seeing, and that I know our state partners, advocates and attorneys are seeing in the States, is there a game plan for attorneys to activate if there’s a widespread issue during the voting period?

Marcia Johnson-Blanco:

There is indeed. So I mentioned in addition to the hotline we have field programs across the country and over 30 states, and what those field programs consist of are what we call command centers where we have attorneys and community partners who are working together to address problems. So as a problem comes into the hotline or is reported from a polling place, we are not just recording the problem, there’s follow up that’s happening with election officials to address the problem in real time. And if they’re not inclined to do so, we’ve even bought litigation on election day, for example, when a polling place did not open on time to get ours extended. And it’s actually very much a group effort when something like that happens because there’ve been instances, and Michelle has been at our national command center when this has happened, is that we’ve gotten a successful poll extension.

That means the partner on the ground having to go to that polling place to make sure that the election officials there don’t close the door in the face of voters because it’s seven o’clock, but no, you’re now extended to nine o’clock. And those who are in line have to be able to vote a regular ballot or a provisional ballot as a case may be. But it’s partnering with election officials before voting begins. So we have a plan in place when a problem pops up, who are we going to be in contact with, and following up with them on resolving that problem along the way.

Michelle Bishop:

Talking about the different types of calls that you get from voters, I have been a volunteer on the phones even before I was at National Command Center, back at the state level one time. My favorite call I’ve ever assisted a voter with was a woman in 2008 who was literally in labor in a car on her way to the hospital to give birth, and she had not voted yet. And she wanted to know what her options were to make sure, because she was about to have a tiny human and she was not going to miss her chance to vote. So that woman’s basically my hero. But the volunteers who are taking a lot of these calls, how prepared are they to answer questions about access for voters with disabilities if they call?

Marcia Johnson-Blanco:

We have what we call frequently asked questions that the volunteers refer to, but they also have guidances that they’ve actually taken from reports that NDRN has done and all the partners that they use as point of references. And I will also say that as part of the work that’s being done on the ground in building our state command centers, I know our partners are reaching out to the NDRN affiliates in the states to be experts there. And to the extent that anyone listening wants to know how to plug into that infrastructure, reach out to Michelle because I know she has the answer or can connect you to someone who does. But we have the general voting information, but we also have information specific to voters that have particular needs. And so, Michelle, I’ll share with you what we have, the extent that anything is missing, let us know because we want to make sure that our volunteers have all the resources they would need to effectively support voters with disabilities.

Stephanie Flynt:

Yeah, no, those are all really great points and I’m so glad that you kind of brought that up because I feel like it kind of leans in a little bit into our next question because one thing, of course, that our network of protection and advocacy systems try to do is of course we try to educate folks. Some of them also have some of the various phone lines in various ways that individuals can report issues with voting, individuals with disabilities can report issues with voting. And so I definitely am curious, and I know some of our listeners are probably going to be familiar with this, but I was wondering if you could speak a little bit to how the Election Protection, how they work with the protection and advocacy systems.

Marcia Johnson-Blanco:

So as I mentioned, we have the command centers in our various states that are right now putting together the infrastructure to respond to problems on election day. And so part of that is working with our community partners to be a resource for voters should particular issues arise. And we have each state building their infrastructure. And so again, I would want to encourage folks who are listening to the podcast, if you want to know particularly how you can engage or to make sure that the Election Protection structure in your case, in your state is engaging with your particular organization to make sure that that support is available. Please follow up with me so we can make sure that’s happening. And Stephanie, I hope that answered your question.

Stephanie Flynt:

Yeah, definitely. Thank you. Thank you so much for shutting some light

Michelle Bishop:

On that. Yeah, that does for sure, actually. And I love when the PNAS from our network get involved in Election Protection and on election day when we’re at the National Command Center, I can see calls coming in about disability and see what voters are calling about from various states and see the notes that the volunteers have entered. And the number of times I see that’s referred this to so and so, or we immediately called so and so, and I’m like, oh, yeah, that’s the PAVA person or the legal director at the P&A. They literally know staff at our organizations to call for disability questions that they can’t resolve. It’s like my work here is done. I’m just going to go vote and get my sticker and go home. We got this. So we love to see P&As get involved. If it’s not too late, you mentioned it before, should they just reach out to me if they want to find out how they can get better involved?

Marcia Johnson-Blanco:

Yes. Because as the states are building their infrastructure, and Michelle serves as our expert on the National Command Center to make sure that we are properly addressing issues that voters with disabilities have and the states are building similar infrastructures and looking for experts to make sure that all the issues across the board are adequately and properly staffed. So anyone who’s listening and thinks, oh, is this happening in my community? How do I get involved? Reach out to Michelle and we can work on coordinating to make sure that we make those connections.

Michelle Bishop:

All right. You heard it here first. Election Protection coalitions in various states are looking for disability rights experts to help them do the work that they do. They want to work with you. So please don’t hesitate to reach out and we’ll make sure we get some Election Protection information out with this episode as well. And Marcia, thank you so much for joining us today. This was super informative. I know we have a bunch of folks who are new to our network who just may not be as familiar with Election Protection who will probably be really excited to get involved now. So thank you so much.

Marcia Johnson-Blanco:

Well thank you so much for having me. And Michelle, I was chuckling when you said, oh, my work here is done, and like haha, because your work is there all during election day with us.

Michelle Bishop:

It’s never done.

Marcia Johnson-Blanco:

Making sure that we’re doing the best possible job we can to support voters with disabilities and definitely welcome the opportunity for your P&As in the states to join those efforts. It’s rough out there and all of our work is needed.

Michelle Bishop:

I know the job is never really done, but a girl can dream.

Marcia Johnson-Blanco:

And I’m here to undermine that. Misery loves company and all that.

Michelle Bishop:

One day I’ll be one of those people who just shows up to vote, takes my sticker, and then I just stop thinking about it. That’s not true. That’s never going to happen. That’s never going to happen. But Marcia, thank you so much for joining us today and for all your just fearless leadership around these issues. We appreciate it so much. And everybody, there’s still time. Don’t forget to vote.

Marcia Johnson-Blanco:

Thank you so much for having me.

Michelle Bishop:

So on this very special episode of the Panda Pod, all about elections, we actually have a really cool spotlight story today from you may recognize her as a former host of the Panda Pod, Erica Hudson, who used to work in our public policy department at NDRN who is currently off pursuing regimes in Sweden right now, has graciously agreed to join us today and talk about her experiences as a poll worker with a disability in 2020. Erica, take it away.

Erika Hudson:

Thank you, Michelle, and hello everyone. It’s good to be back in one of the best podcasts ever, the Panda Pod. Want to talk about my experience as a poll worker, and for some background, I became involved as a poll worker when NDRN was working with Power The Polls and signed up through their portal recognizing that I could be a poll worker in my area. So I did that and signed up through Power The Polls and then got connected to my district, which was in Virginia, in Arlington specifically, and got assigned and it was pretty straightforward becoming a poll worker and really smooth and really fun actually. But it was a little different because it wasn’t 2020 during the height of the pandemic. So a lot of the things we did before the election were virtual, of course, so we didn’t get to meet that many folks.

And then a lot of our training was Covid related, to be honest, going into it, which is understandable. But the training was really straightforward. I will say I remember being quite intrigued because they only very slightly touched on accessibility. They said they would cover all that on election day and didn’t think it was too necessarily to talk about it. In their defense, they did mention it briefly. They had a slide on their presentation that had one of the accessible voting machines. But that was it. And then I was one of those people I think who asked an excessive amount of questions related to accessibility, which I don’t know if they appreciated. But nonetheless, that led us to election day, early day, started out like four-ish. Fortunately my polling place that I was assigned to was in my building, so I had no excuse to be late even though I’m not a morning person.

And in the morning we just set up. And it was really interesting because I noticed very quickly that the accessible voting machine was not going to be set up and was told that, oh, we didn’t have to worry about that because no one uses it. And that was my first opportunity to share the fact that I used that. And legally we need to make sure the accessible voting machine is set up. As a result, begrudgingly, they did set up the accessible voting machine and we got it hooked up, which was good and legally required, if I might say so. Then the day started and we were a good number of poll workers working and it was pretty straightforward because I think in our area a lot of people voted by mail. So it was pretty simple for us throughout the day and a lot of us were just kind of showing people where they had to go and what they had to do.

And I admittedly had an extra eye on accessibility and making sure things were accessible, especially since our polling location was in a gym, kind of like a yoga studio, where the door was opening to the street. So there was a lot of cones and tape that had to be in place to ensure that we had clear lines. And throughout the day, I think I was asking a lot of questions related to accessibility, given my personal experience to that. I think we had no one use the accessible voting machine all day except for the end of the day when I had to step away to do a curbside vote for someone, which was really cool to be able to do. And then I came back about 10 minutes later when someone finally used the accessible voting machine, but we didn’t know how to use it.

So we had to help them vote and they couldn’t vote privately and independently. And I was like, oh, goodness. Here we are. I guess the headphones didn’t work so someone couldn’t see the screen, which was really disappointing that coworkers hadn’t received the training to do that. And I guess I wasn’t there because I was doing a curbside vote. They were still able to vote, which is the important piece of it, but really frustrating that it wasn’t fully accessible. And then keep in mind this individual did vote through that machine and for the rest of the day they knew we had a ballot that came from the accessible voting machine and that was the only one. So it was very clear given only one person had voted on that accessible voting machine that who that was, which was really discouraging and disappointing in my opinion, knowing that didn’t provide full privacy and independence to that.

But I will say I think I was able to ask a lot of questions and get a lot of responses back during my time as a poll worker and other people had a lot of questions about accessibility because it’s very clear that a lot of people didn’t have that much background on it, especially when it comes to voting, which kind of solidified my want to be a poll worker was to make sure that accessibility was at the front and center of our elections and voting in the US. Especially during 2020, a really important year. But it was a long day. I remember that it was like 60… No, that’s dramatic. It was 12 hours at least of being a poll worker. But I would do it again if I was still in America for this upcoming election that’s in November, which is exciting. So encourage anyone to be a poll worker and it’s a really incredible and important opportunity. And more people need to talk about accessibility in the polls because, from my experience, not a lot of people knew what accessibility at polling places looked like. So we need more advocates to be doing that if the opportunity is there. So yeah, I think that’s my story. Do it again. Loved it, but don’t miss the long days. But other than that, recommended it. That was my story of being a poll worker.

Michelle Bishop:

That spotlight story, it’s like Erica going undercover as a spy for us in the world of elections administration because it validates literally everything we say about how they don’t take enough time to train poll workers on accessibility and the accessible equipment. And this is what happens. Or that when you just have one voting machine for people with disabilities, often a corner somewhere, they don’t set it up and they don’t know how to use it and only one person gets to vote on it all day when other people may have chosen to vote on the machine. And that protects the secrecy, the ballot, just everything we say goes wrong. It’s like here is the firsthand account, that this is what happens. Erica, thank you so much for your service as a poll worker and more importantly for your service as a former host of the Panda Pod. We’re going to have to plan some sort of American Swedish crossover episode, so start thinking about that now.

Erika Hudson:

Oh, biggest dream, and I appreciate it. And I will just say too, that voting machine was indeed in the corner of the polling place in a dark far out corner behind the registration table. And then a lovely poll worker, if I may say so my myself, walked up to the chief poll worker and said, that can’t be in the corner. So not going to say who it was, but someone saved the day by not having it in the corner. So everything that you just said, so true, and why we need people to work on this for sure. Like yourself, that you’re doing. So thank you, Michelle. And thanks for having me on Panda Pod again. Love it. Miss it. Dream it.

Michelle Bishop:

Erica, thanks so much for sharing your spotlight story today. And I think we are ready to wrap up. This has been an incredible episode all about elections. One more reminder that November 8th is midterm election day. So if you have not voted yet, make sure you cast your ballot by November 8th. Now I’m thinking, wait, I’m reflecting guys about the slow voting team takeover of NDRN’s podcast because I’m on the voting team and Erin’s on the voting team. But guys, Stephanie’s on the voting team. Stephanie is our public policy person who works on voting issues. This is a successful three out of three hosts that are on the voting team. Jack, our producer’s, on the voting team. Guys, we have successfully taken over the podcast. It only took two episodes. I am so proud of us.

Stephanie Flynt:

I’m here for this.

Michelle Bishop:

Stephanie, hit us with a voting joke. Give me one of your best. Stephanie has terrible jokes, y’all.

Stephanie Flynt:

Is Michelle okay? She seriously asking me to tell a joke right now? Cause she never does that, y’all. Can someone please go check on her, make sure she’s okay? I’m not used to this.

Michelle Bishop:

I thought it would be a good way to celebrate our successful takeover of the podcast for November.

Erin Haire:

Yes. Yes.

Stephanie Flynt:

Oh, if you insist, I guess I’ll do an original one. What do you call a dancer who votes?

Michelle Bishop:

I already regret doing this.

Stephanie Flynt:

A ballotrina.

Michelle Bishop:

That is it for the Panda Pod in November. Please remember to go vote. We’ll see you all in December with a topic that we are definitely going to figure out right now. So see you next month, y’all.

Jack Rosen:

And for more disability related content, you can follow us on Twitter, Instagram, Facebook, and LinkedIn. You can also visit us at ndrn.org.

 

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A summer heat wave can’t stop our intrepid podcasters. In this episode, the gang (well Michelle and Jack) goes abroad! From Brussels, Michelle interviews Alejandro Moledo, the Deputy Director and Head of Policy of the European Disability Forum. Then, Jack conducts our spotlight interview from a hotel lobby in Spain, where he speaks with Mercedes Lopez Miranda about her experiences being a person with a disability in Europe.

To learn more about the work the European Disability Forum does visit https://www.edf-feph.org/

To view the full transcript for this episode visit https://www.ndrn.org/resource/ndr-june24/

 

Stephanie Flynt:

What’s your cold open going to be about?

Michelle Bishop:

It’s probably going to be that now.

Jack Rosen:

Probably that. I don’t know. I’m tired.

Michelle Bishop:

Jack, I’ve never seen you so full of life and vivacious.

Jack Rosen:

Yeah, I don’t know. It’s too hot out to podcast.

Michelle Bishop:

Too hot to pod?

Hey, hey, welcome back to National Disability Radio. It is a little bit hot in D.C. right now and we are all a little bit blah, but I am one of your hosts, Michelle Bishop, the voter access and engagement manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt McEben, public policy analyst at NDRN, and please send coffee gift cards if you feel so inclined. You’ve got our little electronic email address. Okay, thanks.

Raquel Rosa:

And this is Raquel Rosa, your community relations specialist at NDRN and your final third of podcast hostesses.

Michelle Bishop:

Hey, Stephanie is fueled entirely by coffees. You know how most people are 75% water or whatever? Stephanie is 75% iced coffee.

Stephanie Flynt:

I am, yes. And I almost hate to say this because if people find out there might be a supply shortage, but they sell iced coffee in cartons and I was last summer years old when I found that out and it’s been life-changing.

Michelle Bishop:

You drink cartons of coffee?

Stephanie Flynt:

They have iced coffee cartons, like half gallons.

Michelle Bishop:

You’re telling me you drink a half gallon of coffee on a daily basis?

Stephanie Flynt:

Not a daily basis.

Michelle Bishop:

That’s a little scary.

Stephanie Flynt:

Not on a daily basis.

Michelle Bishop:

Speaking of people who are energized and ready to go, where is our producer at?

Jack Rosen:

Oh, I was sending an email asking them to turn up the AC. Hi, producer Jack Rosen here. That’s all I got. I’m genuinely miserable right now.

Michelle Bishop:

This is an enthusiastic episode we have for you all.

Stephanie Flynt:

Very enthusiastic.

Jack Rosen:

Yes. To be clear, I’m miserable about the heat, but I’m excited for our guests on today’s episode. Michelle, you want to tell the people who we have on?

Michelle Bishop:

So I recently had the honor of traveling to Brussels, the home of the European Union, to bring you our very first international episode. We don’t have applause, so now we have to start doing it ourselves. I actually got to visit the European Disability Forum, or EDF. They’re an umbrella organization of persons with disabilities that defend the interest of over 100 million people with disabilities in Europe. As an independent nongovernmental organization that brings together representative organizations of persons with disabilities from across Europe, they’re run by people with disabilities and their families and they’re proud to be a strong united voice of persons with disabilities in Europe. EDF envisions a Europe where persons with disabilities are fully included in society on an equal basis with others. Does that sound familiar? They work to ensure full inclusion in society of persons with disabilities and access to their human rights through active involvement in policy development and implementation and monitoring of the UN Convention on the rights of persons with disabilities in Europe.

Stephanie Flynt:

That’s cool. Oh my goodness. Excited about the interview coming up next that you’re conducting, Michelle. Is that correct?

Michelle Bishop:

Are you all jealous? Are you so jealous?

Stephanie Flynt:

I am jealous, yes. I’ve never been abroad before, so I’m definitely jealous.

Michelle Bishop:

Whoa. We’re going to have to do a second international episode and take Stephanie abroad.

Stephanie Flynt:

Yes.

Michelle Bishop:

I’m in favor. Also, you should be jealous. It was in Brussels, the waffles alone and the fries were worth it.

Stephanie Flynt:

Oh my gosh. Now I want french fries. Thanks.

Michelle Bishop:

I went over to EDF’s offices and I got to meet with Alejandro Moledo, who’s the deputy director and head of policy. Alejandro leads and coordinates EDF’s advocacy and policy work at the EU level and supports the work of the European Parliament Disability Intergroup. Among other areas, Alejandro has developed policy positions and recommendations regarding political participation of persons with disabilities, accessible information and communication technologies, assistive technologies, and different standardization activities. He previously worked as a communication officer within the Parliament of the Valencia region as a journalist in digital media and a communication agency in Andorra and in a public affairs company in Madrid. He actually has an MA in political and corporate communication from the University of Navarra, Spain and George Washington University, and a BA in journalism from the University of Valencia with a year actually at York University in Canada. And I will warn you guys in advance that Alejandro and I had started having a really broad conversation about disability rights in US and in Europe, but they’re having elections coming up too and as soon as we got into elections, it got election geeky real fast.

Stephanie Flynt:

I’m here for it.

Michelle Bishop:

Alejandro, thank you so much for sitting down with me today. I just got into Brussels this morning, but I was so excited to sit down and have this conversation with you. Most of our listeners are American. They know a lot about disability rights in the states, but I don’t know if they know that much about the European Disability Forum, and I was wondering if you could start off by just telling us a little bit, a bit about that and what you do.

Alejandro Moledo:

Sure, thank you. Thank you so much for having me in your podcast. So the European Disability Forum is an organization that brings together the European disability movement. We are an umbrella organization and our members are those European NGOs that represent different disability groups such as the European Blind Union, the European Union of the Deaf, Autism Europe, Inclusion Europe, people with intellectual disabilities, and also those organizations at national level that represent the disability community. And we work very closely with the European Union institutions, as we are an advocacy organization that promotes the rights of persons with disabilities, and we do so by involving all our members in the policy-making and trying to influence the laws that are being adopted at EU level. And on top of that, we obviously work with our members in building the capacity of the movement and promoting the rights of persons with disabilities. So that would be more or less we do.

Michelle Bishop:

So we’re actually not that different. I’m with the National Disability Rights Network in the States and we are a national membership association, so I’m based in D.C. but our member organizations, the disability rights organizations are in every US state and territory, and we’re sort of their association that supports the work that they do and we work on policy at the national level. So we’re actually not that different. In the United States, we rely so much on the Americans with Disabilities Act. For the rights of people with disabilities, to protect their rights, it’s such a big landmark piece of civil rights legislation. There’s so much stuff in it, good stuff. There’s architectural access stuff, that places of public accommodation have to be accessible, but it’s also got non-discrimination and employment and access to programs and all those sorts of things. I’m wondering what that looks like in Europe. How are the rights of people with disabilities protected?

Alejandro Moledo:

Well, in Europe, finally we have the UN Convention on the rights of persons with disabilities ratified by all member states, and not only by all member states, but also by the European Union as a supranational organization. So this kind of universal ratification of the convention for us has been really a driving force for disability rights. And the thing is that, and you know very well, the convention was very much inspired by the Americans Disabilities Act and also from Europe, we also look at your good practices and good legislation also as a food for thought or inspiration for campaigns and advocacy that we do here in Europe. But when it comes to specific policies, which I guess is similar to within the US, but it’s complicated because we have the EU as having certain competencies in which the EU basically is the ruler, such as, for example, internal market. We have a single market in the EU and therefore, for example, laws concerning accessibility can be introduced and have been introduced by the European Union, transport services as well.

But then when it comes to other areas such as let’s say employment policies, education, in this case the member state has the competence and the EU has a supportive kind of role. And in this supportive role, obviously we also have certain room for improvements and ideas that can guarantee that member state exchange these good practices and can advance on the rights of persons with disabilities in different areas. So we work with this kind of complex policy system, but with the idea that every right that we have been achieving at EU level will come even if it will take time at national level, regional level, and local level in the coming years. EDF was created in 1996, and in 1997 the Amsterdam Treaty of the EU finally included disability in the article on non-discrimination and since then, we’ve seen how the EU has increasingly become more present in the everyday life of all citizens, but also on persons with disabilities. So we work with that scenario and trying to get the best out of it.

Michelle Bishop:

That’s really fascinating to me and I bet it is for a lot of our listeners because it sounds really similar to the United States in that we do have some overarching federal policy especially that protects the rates of people with disabilities, but we’re very much founded in this notion of states’ rights and the states having a lot of independence. And one of the things we often lament is what it looks like to be a person with a disability can often depend on where you live in the United States. The policies and the programs can look very different. How does that work here? Do the nations that are part of the European Union work together well on these issues? Is it complex? What does that look like in terms of someone who’s looking at policy around the European Union every day?

Alejandro Moledo:

Well, it really depends on the country and it really depends on the policy area that we are talking about. We often get the question like which is the best EU member state when it comes to the rights of persons with disabilities? And that’s an impossible question to answer because it really depends on how the country has transposed certain EU legislation because when we adopt, for example, a European directive, then member states have certain room for interpretation, particularly on how they want to fulfill the obligations of such European law. In this possibility, obviously from EDF, we prepare toolkits, guiding materials for our members to take this opportunity to advance on the rights of persons with disabilities. I’ll give you an example. Well, recently, back in 2019, we had the first ever horizontal legislation on accessibility, the European Accessibility Act, very important for accessibility in Europe.

Finally, we kind of catch up with the US when it comes to accessibility. And in this legislation we made sure that the European emergency number, which in our case is the 112, will become accessible for persons with disabilities. But it does not include national emergency numbers or other national numbers which are of interest and importance for persons with disabilities as well, so in our toolkit, in our guidance to our members, we recommended, “When you engage in discussions with your government, make sure to propose that in the national law, you also include the national emergency numbers.” That is how we can advance on accessibility, taking the European Union as a basis and then going forward and beyond. So the member states do cooperate well when it comes to certain areas, accessibility is the one that I just mentioned that I think is a good example.

In other cases, it really depends on the system they have in place. Because we have different social protection system and different, for example, with voting rights, which I guess we will talk in a minute, it’s very different across member states. So when countries do have similarities, they use a good space to share those good practices. And we do so at the disability community level, but also promoting that the EU ensure this kind of space for member states to discuss. We have the European Disability Strategy, and one of the flagship initiative of the strategy has been the creation of an expert group called the Disability Platform in which EDF and many of our members are there as civil society members. But also the CRPD, the convention of focal points of the EU and all member states. So this is a good forum for them to exchange on different policy areas and for us also to intervene and have our say on the different discussions and the different actions that this strategy was promising.

Michelle Bishop:

Okay. You mentioned voting rights and my face automatically lit up. As you know, back in the states, voting rights is my thing. I work on protecting and expanding all-site access to the vote for people with disabilities because our electoral process unfortunately is not yet fully accessible. We’re working on it. We have good federal law in place, actually. The Help America Vote Act of 2002 and the Americans with Disabilities Act actually applies, so we’re working on it. We’re getting there. I know there’s elections coming up in Europe as well because we’re about to go into a presidential election. It’s charging at us at full speed. There’s primaries going on as we record. So talk to me about elections in Europe and what that looks like for people with disabilities.

Alejandro Moledo:

Well, this is also a policy campaign that excites me very much and I’m also working very intensively on. In Europe, as I mentioned, we have many different voting systems, first of all, so the different voting tradition makes it difficult for having a homogeneous or kind of harmonized similar way of voting in all of the EU. We have certain member states in which we have closed lists, so basically the voter just picks a ballot and that’s it. We have many member states in which voters can cast a preferential vote. And we have for example, one member state, Estonia, in which voters can vote as an alternative means of voting by internet through our website, which is accessible by the way, and our members love it. And so the EU itself, as you know, the democratic institution that we have is the European Parliament. This is the one that represents European citizens.

Then the European Commission would be our government, and then the Council of the EU is institution that represents our national governments. But we do not elect the president of the European Commission or the commissioner, which would be the ministers, or the representatives in the council because these are the ministers at national level, so people elect them through their national elections. So the one that we elect directly as citizens is the European Parliament, and here the European Union has its law back in 1976. And obviously this was before the ratification, even before the drafting of The UN Convention on the Rights of Persons with Disabilities, and it includes very minimum set of rules. So we can say even if we talk about the European elections, we have actually de facto 27 different elections. And within this very diverse system in Europe, we use this kind of motto like united in diversity because even if we are very diverse, we elect the European Parliament. This poses challenges for the participation of persons with disabilities in political life.

And here at EDF, we published back in 2022 a research report. Every year we publish this series of human rights report, and that year in 2022 was the human rights report on political participation in which we kind of big dig deeper into the political or electoral rights of persons with disabilities and we make maps comparing the situation and data comparing the situation across the 27 member states. And we brought cases that really brought substantial change at national level, so I recommend your listeners to take a look at this report, which is really, really interesting. And the good thing is that it is getting outdated, which is great because that means that there is progress. I will tell you in a moment.

So in this report, we kind of divided the barriers into the legal barriers and the practical barriers because still today, there are 12 member states in which mostly people with intellectual and psychosocial disabilities that are under certain substituted decision-making regime like legal guardianship, for example, which are totally or partially incapacitated can be deprived of the right to vote. Among these 12 member states in which people with disabilities can be deprived the right to vote, in six of them if you are placed under total partial guardianship, you automatically lose your voting rights and obviously your rights to stand as candidate. And fortunately, we’ve seen progress.

Some months ago we got Slovenia changing their national law, and for the first time people placed under their guardianship will vote in the upcoming European elections in June. Last year, we had Luxembourg also changing their laws and ensuring that all persons with disabilities without exception can vote and stand as candidate to the European Parliament. So now all in all, we have 15 member states that uphold the right to vote for persons with disabilities without exception. However, if you look at the right to stand as candidate, the funny thing is that this number is lower. So instead of 15, we have only 10 countries that uphold the right to stand for office, and this still keeps alive this unfortunate double standard for persons with disabilities.

We cannot be active and political citizens, and we hope that member states will continue changing their national laws at these remaining 12 countries. From the European Union along with the European Parliament, we have proposed a new electoral law that ensures the right to vote regardless of legal capacity. But unfortunately the electoral law is a competence of the council, so the institution that I referred before, the one that represents our national government, and they are not really willing to have a new EU electoral law. Not because of the disability provisions in this law, but also because of other controversial aspects that member states are not willing to accept because elections are very sensitive and some of them, they don’t want Brussels to tell them how they arrange their elections.

Michelle Bishop:

That is shockingly similar to how we do the work in the states where elections are. Very few of our election laws are federal laws. Most of them are state laws and a lot of the policies are even set at the county level within the states. They’re very local and they absolutely do not want to be told how to run their elections, and they all do it a little bit differently. We also are working on this issue of people with disabilities losing the right to vote under guardianship. The majority of states in the US have some sort of policy in place where that can happen. In a number of them, a determination has to be made by the judge as to whether or not the person will lose the right to vote, but we do also have some states that automatically remove the right to vote based on guardianship.

So if you’re interested I can send you, the US Department of Justice just updated their guidance recently on the Americans with Disabilities Act, and it says in there explicitly that you cannot categorically disenfranchise voters with disabilities based on guardianship. And that’s I think the first time we’ve had something that strong in writing that talks about the fact that you can’t just automatically remove a right to vote from a person with disability based on guardianship, so we’re excited about that. I’m really interested in this report. Did you say our listeners can snag it online if they want to take a look?

Alejandro Moledo:

Yeah, definitely. If you just look for EDF Human Rights Report, political participation, you’ll find it. We have it in accessible format, ebook format as well. And we are updating the web page with the recent changes that we are aware of at national level because the report, unfortunately we cannot change it, but it’s really good because there is nothing like naming and shaming or comparing neighbors. So in Europe, when we have these maps with different colors, then suddenly I received an email from a national official telling us like, “Hey, please, we just changed the law. Can you change the color of our country in your report?” “Sorry, it’s in PDF. We can’t do that.” But we are making these kind of updates in the website of EDF. The European Commission made a recommendation in which they also recommended, so it’s not a binding document, but the commission can issue recommendations to member states, and the commission issued that recommendation proposing or suggesting to member state to remove the automatic deprivation of voting rights.

But they added, “Without redress mechanism or individual assessment,” something like that. So basically what they were saying is that it is bad to have this automatic deprivation voting rights, but you can have it on an individual basis. And from our perspective, the UN Convention on the Rights of Persons with Disabilities is very clear, everyone should have the same electoral rights. So we felt that the commission, it was not so ambitious or as ambitious as we would have liked to be. And also concerning the elections, the commission issued at the same time or a week before, I believe, a guide on inclusive electoral practices for persons with disabilities, which is very interesting because it brings specific cases and annexes in which you can look at different methods that the member states have put in place to ensure accessibility of the elections.

Many of them were, I must say, also taken from our report, which is great because that means that the commission is also looking at paying attention the inputs that we send them. And we cooperate very well with them because these are what we were just discussing, is the legal barriers. So people with disabilities that cannot simply cannot enjoy their political rights, but many more or millions I would say do not engage in the elections because of different practical barriers. And here when it comes accessibility, here when it comes reasonable accommodation, the right to choose to freely choose your personal assistant to assist you in casting the vote, which in two member states this is not possible. In two member states, you can only be assisted by an election official, which is really explicitly contradicting the UN Convention because you basically need to reveal your vote to a stranger.

And this obviously can be very detrimental in small and big communities, there is no difference. Everyone should have the right to freely choose the assistants to cast their vote. And when it comes to accessibility, this guide or our report can be a good source of inspiration because we have so many ways of voting in Europe. So I mentioned we have the internet voting in Estonia. In Belgium and I think in Bulgaria, we have voting machines which are not accessible. In countries in which there is a closed lid, have different ways of making it accessible like braille envelopes. There is countries in which you even need to hand write the name of the candidate, which is obviously posing many difficulties for persons with disabilities. There is a country, Romania, in which you need to vote with a specific booklet and using stamps.

So there are really a huge diversity of voting cultures in Europe, but what is really interesting of our report and this guide is that it shows that when electoral authorities cooperate with disability organizations, they find solutions. And we’ve seen that, for example, in the Netherlands, in Sweden, in Luxembourg, for example, when electoral authorities sit down with our members and with specific OPDs representing the disability groups and say, “Okay, how we vote here? Okay, we vote like this. How we can maximize accessibility of these specific ballot paper that we use. Okay, maybe we can enlarge the font size. Okay, maybe we can include pictograms. Maybe we can have a QR code that could assist blind people to get the information in an accessible web document.” So there are different solutions, and I think the key message from our report was that the cooperation between electoral authorities and the disability community is crucial to really remove these barriers for electoral rights. Sorry, I get too excited with this.

Michelle Bishop:

You and I both get too excited talking about voting and elections. I don’t know if they knew what they were getting into when they paired us together for this episode. But you brought up something I’m also really passionate about, that in the US you do have the right to the assistant of your choice, and that is protected by federal law. And I just think that’s a really important feature of elections because you should be able to get an election worker to assist you if you don’t have someone, but you should be able to ask someone that you trust to mark your ballot in the way that you want it marked, and you shouldn’t have to disclose that information to a stranger or to someone to whom you don’t have that trust relationship. But I’m really excited to dive into this report.

I love this idea of these maps and maybe generating some healthy competition among the different countries. I’d love to do that with the states in the US. We might steal that idea from you all. We’ll absolutely give you credit if we take it. I don’t want to take up too much of your day. I just want to say thank you so much for sitting down with me today. This was really interesting. It surprised me actually how many issues we had in common and how many things that we’re working on that you’re working on as well. It strikes me that the disability rights movement as a civil and human rights movement is just truly global, and we’re facing a lot of the same struggles all over the world and that’s hard, but also encouraging at the same time. We’re very much all in this together. Thank you so much for talking this afternoon.

Alejandro Moledo:

Thank you to you. Thank you very much. We should also work together.

Michelle Bishop:

Yes, absolutely. Let’s keep this going. I’m going to get you in touch with our public policy folks immediately. Thank you.

Alejandro Moledo:

Thank you.

Jack Rosen:

And actually, I have a surprise guest. I’m recording here from Spain and today I am speaking to Mercedes Lopez Miranda, who has spinal muscular atrophy, and she’s going to talk a little bit about what it’s like being a person with a disability and a wheelchair user in Spain. So Mercedes, do you want to tell us a little bit about what it’s like to be a person with a disability in Europe?

Mercedes Lopez Miranda:

Hi. First of all, I am from Venezuela and I am living in Spain like seven years old. Living in Madrid with a disability is really nice because almost every building has accessibility and the public transport is really good, but it has the exceptions like the Renfe. That is a train that doesn’t have any accessibility for wheelchair users, and also the streets sometimes are kind of hard to transit because they are super old cities to change, and that’s difficult. But almost everything works fine.

Jack Rosen:

One thing you mentioned to me before we started recording was that if you need home modifications, that happens through the government. We have something a little similar in the US for people who get Medicare and certain other services, but do you want to talk about that a little?

Mercedes Lopez Miranda:

Once a year, they open a free time where you submit a bunch of papers to adapt your home for your disability or the entrance of the building. So we’re doing that with our bathroom. We’re waiting a response for that, so that’s nice. We don’t have that in Venezuela.

Jack Rosen:

I guess what are some areas where you think Europe could do better in terms of access?

Mercedes Lopez Miranda:

Well, a lot of stores have super big steps to go there and the work area, sometimes it’s super hard to get because companies, even though they have a benefit for people with disability, they don’t hire you. I don’t know why. And then they don’t allow you to work remotely. So that’s the part that I think that they can improve.

Jack Rosen:

So you mentioned one of the challenges is employment and finding remote work. Do you want to talk a little bit about how that works over here and some of the challenges?

Mercedes Lopez Miranda:

Well, in my experience, I have I don’t remember how many interviews, but at least 50. And I get to the last one and they tell me that I can’t work from home, even though I can do my work from home, because I’m a graphic designer and video editor, and they don’t give me a reason why they don’t want to help me to work from home. So that’s one of the biggest challenges that I’ve been getting here in Madrid. So I don’t understand that part, the reason why I can’t work from home even though I can.

Jack Rosen:

Okay. I’m just going to say as aside, if the answer to this question is, “I don’t know,” that’s fine. Is there I guess anything you’ve seen in Europe that you think is something that I guess we could do better in the US?

Mercedes Lopez Miranda:

Well, I don’t know because I’ve been in the United States, and for me, everything is super accessible. So I think it’s in the reverse way, the European people needs to learn from America.

Jack Rosen:

Hey, we’re getting something right. Let’s celebrate that. Thank you so much, Mercedes, for taking the time to talk to us, and I’ll throw it back to the podcast team now who are probably wondering where this interview came from and why I didn’t tell them about this.

Michelle Bishop:

Excuse me, wait. Pause a second. Jack, are you telling me that you secretly recorded a spotlight story?

Jack Rosen:

Oh, but I’m not a host, huh?

Michelle Bishop:

Oh, wow. This episode was going so well between us. Well, it was a great spotlight story, I was going to say, but maybe we should just go to Stephanie for the joke.

Stephanie Flynt:

I don’t know. Now I have Bad Blood by Taylor Swift in my head, and I’m just like, “Is that about to be the theme of the podcast?”

Michelle Bishop:

If it’s the Kendrick Lamar version, I think Jack will like it.

Stephanie Flynt:

Oh, wait. That’s the version where someone raps, right?

Michelle Bishop:

Stephanie, do you not know who Kendrick… I can’t. Just don’t.

Stephanie Flynt:

I do know who Kendrick-

Michelle Bishop:

Lamar.

Stephanie Flynt:

… he’s the one that sings the HUMBLE. song.

Michelle Bishop:

Sings?

Jack Rosen:

I think Nala knows more now because when I was dog-sitting her, I showed her the pop-out concert.

Stephanie Flynt:

The what pop-up?

Michelle Bishop:

As Nala.

Stephanie Flynt:

Oh, she’s asleep. She just glared at me. Okay, so I’m convinced that my life is a pun because apparently I need more change in my life all the time. Not only did I get married… don’t sigh at me, dog… I ended up moving to another apartment and all the fun, moving further outside of the city. But when we moved, we realized there was no overhead lighting in our apartment. And so when I was talking with Quinn about it, I was like, “Well, we can just look on the bright side and get some more lamps.” My life is a pun. It’s fine.

Michelle Bishop:

Everything about this is amazing.

Stephanie Flynt:

Yes. So it is Quinn’s fault that we don’t have any light. We have natural light, we just don’t have light, light. The fake news light.

Michelle Bishop:

Well, give Nala a pet from all of us, especially from Kendrick Lamar, and Jack, please tell the people where they can find us on social media.

Jack Rosen:

You can find us on LinkedIn, Threads, Twitter, Facebook, and Instagram. And as always, you can email us at podcast@ndrn.org. Until next time, folks.

Stephanie Flynt:

Bye.

Michelle Bishop:

I’m tired.

 

The PandA Pod is back! And we have a new co-host, a new producer, and some fantastic guests. In this episode, NDRN’s Amy Scherer joins us we sit down with Senator Steve Daines of Montana to discuss competitive, integrated employment.

Transcript

Jack Rosen:

All right.

Michelle Bishop:

Ready to go anytime?

Jack Rosen:

We should be good to go.

Michelle Bishop:

Hey, hey, everybody. Welcome back to the PandA Pod. It’s been quite a while since we dropped a new episode for you. We kind of, somewhere in the middle of the pandemic, went out with a bit of a whimper. And we made some big, big plans to come back with a bang, and I’m pretty sure we’re rolling back in with another whimper because I’m one third of your hosting team, and one third of us isn’t here, and I’m sick, and one third is new and y’all haven’t even met her yet.
But anyway, let’s get it rolling. We actually have an awesome episode for you today. This is National Disability Employment Awareness Month. I’m pretty sure I got that right. So, we’re going to have some really cool content for you.
Hi everybody, I’m Michelle Bishop. I’m the voter access and engagement manager at NDRN, one third of your hosts. Unfortunately, Justice Shorter, who… Gosh, what is Justice, disaster advisor at NDRN? Is that her title? Something like that… is out today, so she won’t be joining us. And if you recall, Erika Hudson left us to go live in Sweden for some reason. I don’t know what she was thinking. Traveling around Europe sounded better than hosting this podcast. So, we actually have a brand new host joining us today. Stephanie Flynt, let the people know who you are.

Stephanie: Yeah, thanks so much, Michelle. And I must say, before we get too into this podcast, that I really do look forward to working with all of you.

Michelle Bishop:

Is that… Oh no. Was that… Oh, I knew it was, just by the way you phrased it. All right. If anyone was worried about the loss of Erika’s terrible, terrible puns from this podcast, don’t worry. Stephanie is so anxious to fill those shoes, she’s just all the bad dad jokes lined up for you. So, the terrible humor will continue.

I’d like to say this is going to become a more serious podcast with less weirdness, and less of me and Justice singing off key, but that is unlikely. I think we’re going to keep rolling the way we have been. So, all right, let’s get started. Stephanie, talk to me. Talk to me about employment month, and talk to me about why you’re excited to host this podcast.

Stephanie Flynt:

Yeah. So, I’m super excited to be helping to host this podcast. I think that this is something that is super important to talk about. The disability unemployment rate, and under-employment rate, is very high. I want to say it’s at about 70%, and that includes individuals with disabilities who are unfortunately paid sub-minimum wage. They don’t get paid enough. Well, not even enough, but they don’t get paid the minimum wage in their states. Most states, unfortunately, continue with that practice.

And another thing is, a lot of companies hesitate to hire individuals with disabilities. We often see that when people end up disclosing. They’re not always called back for a first… Or even if they’re called back after they’ve disclosed during the first interview, oftentimes you sadly see them not get called back for the second interview. And oftentimes, it’s really hard to prove that that was disability discrimination. And, who knows, sometimes it isn’t, but a lot of the time it really is. I’ve definitely seen people who are under-qualified for jobs apply for those jobs, and most of the interview contains questions about how are you going to be able to do the job because of the fact that you’re disabled?

Michelle Bishop:

Yeah, I mean, it’s horrifying when you think about those employment numbers. So, I think this is a great opportunity to relaunch this podcast and talk about something that really, really matters to the folks that we serve.
Before we get into all that, we actually have some new segments we’re going to be introducing to this podcast for you all. We’re going to do a little bit of a who’s-who, some of our network, and the new stuff, and talk about some of the amazing things that you all are doing in your states. And before we wrap up today, we’ll also have a spotlight story where we’re going to just kind of highlight a really critical issue that maybe doesn’t get enough attention, with a personal story from a person with a disability. So, keep an ear out for that. And if you know some good in the news, or you’ve got a great spotlight story, you should definitely reach out to us. We want to feature you in a future episode.
So, let’s get to the network in the news piece. And we’re down a host, but we have our faithful producer, Jack Rosen, from the communications team at NDRN here with us today. Jack, talk to us. What’s happening in the news?

Jack Rosen:

Coming in from Wisconsin, a bill would ensure assistance for disabled voters.

Michelle Bishop:

This one’s a bit of an ongoing saga, if y’all haven’t been following this one, and actually our Wisconsin folks have been really doing some amazing work around this. So, this goes back to a bill that was proposed in Wisconsin that would have placed some limitations on who can assist a voter with a disability. Especially when we’re talking about returning your ballot, if you’re someone to votes by mail, which is really critical for people who live in long-term care facilities. They were trying to place some limitations on that. Unfortunately, for the state of Wisconsin, that is protected by federal law. That’s part of the Voting Rights Act. So, you can’t just restrict people having the assistant of their choice when it comes to voting. And that means getting your ballot, marking your ballot, returning your ballot.

There was just successful litigation coming out of Wisconsin, this went up to their Supreme Court, but they did find that those limitations violated federal law. So, there’s been some successful case law there. Shout out to Disability Rights Wisconsin, who’ve been working so hard.

And now we’re hearing, yeah, there’s a new bill being proposed, which to my understanding, Jack, just kind of takes what’s in federal law, those Voting Rights Act protections, and would codify them permanently into Wisconsin law so they don’t have this issue again where you’ve got courts making these decisions.

Stephanie Flynt:

Yeah, absolutely. And that is super important. A lot of people will ask, “Why do you need this, if it’s already in federal law?” Federal law, trump state law?

Well, oftentimes we find that in the midst of everything election laws-related, sometimes there needs to be, I guess you could call it, a reminder, per se, or just kind of ensuring the protections are actually followed by putting those into state law and just bringing attention to that.

Michelle Bishop:

It’s true. It’s so true. So, I love this story. This is an example of a P&A working really hard to fight something that would really restrict access to the vote right as we’re rolling into midterm elections, and seeing some success there. But what other stories have we got what’s going on in the network?

Jack Rosen:

Last month in September, from September 19th to the 25th, Disability Rights Washington sponsored their annual Week Without Driving, where people voluntarily agree to get around without driving themselves in a vehicle. How does Week Without Driving work, you ask? You can get around however you want, but you can’t drive yourself in a car. This applies to all activities, not just your work commutes. And if you normally transport other family members or friends, it applies to those trips, too. You can ask someone else to drive you, but you’re asked to note how much you, quote, owe this person in their time, and if you feel obligated to support them in other ways. You can use ride hail, that’s a little odd, or taxis.

Michelle Bishop:

Ride hail. That must be a West Coast thing.

Stephanie Flynt:

Maybe so. Yeah, no. And this is super important. As a blind person, I definitely… I can’t drive legally, rather. So, there are times, particularly in rural areas where people who are blind, or people who have other disabilities that prevent them from driving, it can be super difficult for us to get around.

It’s so easy for folks who are able to drive to just jump in a car. And while things have gotten progressively easier… There is Lyft, there is Uber. You can usually request a ride at the touch of a button.

Unfortunately, people with disabilities, and I’ve actually experienced this, have been discriminated against, or are discriminated against, more often than they should be by rideshare companies because of the fact that maybe they have a service animal. Or in my case, in recent rides that I’ve taken, on account of my blindness.

So, at that point, the rides aren’t as instantaneous as you would think they are. Not to mention, as Jack was talking about, being charged for those rides. When you’re paying for gas now, not a few months ago, right, but when you’re paying for gas now, it’s significantly cheaper for you to go, say, three miles back from the grocery store. Whereas for me, it could cost anywhere from $10 to $30, or $40 if the rideshare companies are surging.

Michelle Bishop:

Anything else going on interesting in the news lately?

Jack Rosen:

Yes. In the Virgin Islands, emergency planners urge vigilance at St. Thomas Exposition. A number of government agencies, led by the Virgin Islands Territorial Emergency Management Agency and the health department, joined by nonprofit groups, are staging a preparedness expo at the University of the Virgin Islands Sports and Fitness Center on St. Thomas.
According to one organizer, Monday’s event was designed to remind participants how important it is for older residents and those with disabilities to plan ahead. And one of the exhibitors at that expo will be our affiliate, The Disability Rights Center of the Virgin Islands.

Michelle Bishop:

Yes. I mean we’re going to be talking about employment a lot in this episode of the podcast, but it’s definitely important to recognize, especially since Justice couldn’t be here to do it herself, that this is really hurricane season as well. So, this is a really dangerous time in some parts of the United States, especially for the folks in the US Virgin Islands. So, this kind of preparedness is really important. These sounded like they were really cool events. I personally would have volunteered to come to the US Virgin Islands to help support those events, so I hope next time they’ll invite me. I’ll just do some voter registration or something. It’s fine. We can come up with a reason that I need to go to US Virgin Islands. Perhaps we should plan some future events. I’m looking at you, Puerto Rico, and I’ll come down and help with those as well.

But in all seriousness, it is hurricane season, even though we’re talking about employment. So, P&As everywhere should be thinking about disaster preparedness. I know hurricanes really affect only certain states, but flash flooding happens everywhere. I come from blizzard territory, because I’m from upstate New York originally, and that happens in half of the country. The forest fires that we’re seeing out west, or the wildfires, if you will, that we’re seeing out west, disaster happens everywhere, and preparedness really matters if we’re going to get people with disabilities out, and safely.

Stephanie Flynt:

Yeah, no. Absolutely. And making sure that individuals have a plan, and making sure that state and local communities also have some sort of contingency plans. Again, I know that Justice would say the same thing. Right? Preparedness really is key here in ensuring that individuals with disabilities are even able to evacuate before these disasters strike, if there is a chance for them to evacuate.

Oftentimes, there may be some mandatory evacuation orders, but individuals with disabilities sadly are often left behind. They’re not seen as people who are even able, or they’re not able to evacuate unless they have assistance from other folks, and not everyone has family or friends who are able to assist them where they live. And so, oftentimes they may be left behind, and unfortunately have to be rescued rather than evacuated. So, planning really and truly is key.

Michelle Bishop:

We have an interview this episode, right, with the senator?

Stephanie Flynt:

Yeah, yeah. Actually, we are going to be interviewing Senator Steve Daines of Montana. He’s actually one of our champions for the Transformation to Competitive and Integrative Employment Act. He’s actually the Republican lead on the Senate side. So, definitely very grateful for his championship on this initiative and his leadership on this initiative.
One of the things that he certainly has made sure that individuals know that he values is equal treatment of all individuals, including individuals with disabilities. So, it’s just really refreshing and really great to see that. So yeah, super excited about interviewing the senator later this episode.

Michelle Bishop:

Well, with that, I’d say welcome Senator, and let’s get right to it. All right. So, as we mentioned earlier in the episode, this is actually the National Disability Employment Awareness Month, and that’s what we’re going to be talking about today. Now, towards that end, we actually have a couple special guests with us. First, I’ll introduce you to Amy Scherer with NDRN. Amy, who came to help us with this interview, talk to the people.

Amy Scherer:

Hi, so glad to be here today. Thank you so much for inviting me. Like Michelle just said, my name is Amy Scherer, and I’m a senior staff attorney at NDRN, and I focus primarily on employment issues and specifically issues with vocational rehabilitation, or VR, which is a program designed to help people with disabilities obtain and maintain employment. And employment is a topic that I’m really passionate about, so I’m really glad to participate in this conversation.

Michelle Bishop:

That’s amazing because I don’t anticipate us asking a lot of questions about voting systems today. So, thank you Amy, for hopping on with us. We appreciate it so much. We hope we can wrangle you back into some future episodes.
Well, we actually have a very important honorable guest with us today. We’re going to be talking to Senator Steve Daines of Montana. Senator Daines is a fifth-generation Montanan who brings 28 years of private-sector business experience to Washington DC. A graduate of Montana State University, Senator Daines was elected to the House of Representatives in 2012 and the Senate in 2014, and he was recently reelected to a second term in 2020. Congratulations, Senator. He serves on the Senate committees on Finance, Energy and Natural Resources, Banking and Indian Affairs. Senator Daines joins us today to discuss his support for competitive integrated employment for people with disabilities. Senator, thank you so much for joining us today.

Senator Steve Daines:

Hey, I’m really glad to join you all. Thank you.

Michelle Bishop:

Oh, we appreciate it. If you could just get us started by telling our listeners a little bit about your background and how that contributes to your support for competitive and integrated employment opportunities for people with disabilities.

Senator Steve Daines:

Yeah, happy to. Well, you mentioned it in that introduction, and thank you for that. I’ve spent most of my career in the private sector in business, a rather shorter career in politics. And consequently, I’ve been involved in hiring in the workforce from our private sector side for most of my life.

I grew up in a construction business. My mom and dad were contractors. We built homes as a kid, and so that’s where I worked during my summers. But I guess when I think about this issue, I’m passionate about work, the dignity of work, the hope that is found in work, and how we need to be supporting Americans with disabilities in the workforce, and not in any way treating them unfairly.

When you think about the importance of work, it’s so much of our identity. It’s what we think about perhaps as we go home at night, wake up in the morning. Going to a job is so important. To illustrate that, when you think about meeting people for the first time, you’ll ask them their name, and usually the very next question you ask is, “What do you do?” And it usually relates to our vocation, our work.

And I don’t know about your listeners and you all, but sometimes I’ll forget a person’s name, but I’ll remember what they said about where they work or what they do. And I think that just illustrates how work is part of our identity around who we are.
And here in the US Senate, we’re working across the aisle to support people with disabilities to help them engage more effectively with their communities, and working towards financial independence, and also creating a more inclusive workforce. So, I guess I’d say, just a product of having worked most of my life outside of politics, and I think bringing that perspective to Washington can help in this discussion.

Amy Scherer:

This is Amy. I love what you said about financial independence and inclusive workforce because I think that is such an important part of the puzzle. Related to that, obviously we’ve been going through a pandemic the last few years, and there were a lot of accommodations that were provided during that time, both to people with disabilities and those without disabilities, to allow them to continue to work remotely or in other ways. So, I just wanted to ask you kind of a two-part question, but the first part is if you have any strategies that you would recommend for workers who happen to have disabilities who would like to preserve their accommodations that they received during the pandemic?

Senator Steve Daines:

Yeah. Well, I mean, you think about, we learned a lot about what to do and what not to do, looking back, related to a pandemic. But we’ve introduced a bipartisan bill. I’ve introduced this with Senator Casey of Pennsylvania, and it’s called the Transformation to Competitive Integrated Employment Act. And what it does is it ensures that people with disabilities are never paid below minimum wage.

We’re facing a labor shortage, a workforce shortage, across our country. And I think there’s a fundamental question of fairness as it relates to those with disabilities to make sure they’re paid at least at minimum wage or above. Because we have thousands of Americans with disabilities who are paid below minimum wage, because of a provision in the Fair Labor Standards Act that allows employers to apply for special certificates from the Department of Labor to pay workers less than minimum wage.
And when you look at the average wage of these people working under these certificates, it was $3.34 per hour. That is just unacceptable. And so, I think we need to get this rather commonsense piece of legislation passed, to make sure we’re supporting Americans with disabilities in our workforce.

And so, what this bill does, it would fix it by getting rid of these certificates that enable employers to pay below minimum wage, and provide resources to those employers that were paying below minimum wage, to ensure they can still fairly compensate their workers. So, we’re off to a good start. We’ve got early bipartisan support, which as you know, back here in Washington, that’s a really important dynamic to get something actually done and on the president’s desk.

Amy Scherer:

Yes, and I love that you, again, highlighted the sub-minimum wage issue because there are a lot of people probably even listening to the podcast that don’t even know that it is legal, as you said, under the Fair Labor Standard Act, to pay people with disabilities under the minimum wage. So, that is a huge issue to try to bring awareness to that, and we appreciate that tremendously.
Related to that, because that is more of a, as you indicated, federal piece of legislation, and I know that you are a senator representing Montana, so can you speak to any specific state efforts Montana is undergoing or has undergone to ensure equal employment opportunities for people with disabilities?

Senator Steve Daines:

Yeah, I’d be happy to. And if some of the listeners here have not been to Montana, we hope you have a chance to come out and visit. We have a beautiful state. It’s been made famous by the show Yellowstone of late, but I can tell you, it’s a lot safer than what Yellowstone portrays. I’ll leave it at that.

But here’s what we’re doing in Montana. It’s the Montana Vocational Rehabilitation and Blind Services. It’s a group that promotes opportunities for Montanans with disabilities to have rewarding careers and to thrive in their community. This group helped form partnerships with businesses to fill their employment needs. We have some great Montana companies there. Wheat Montana is a company that many in Montana know about. Town Pump, these are convenient stores, gas stations across our state, started by family in Butte, Montana. And then, there’s a global high-tech company, Applied Materials, that have a major operation up in Montana in Kalispell, and they produce the manufacturing equipment for semiconductors.
And when you think about the workforce shortages, this Vocational Rehabilitation and Blind Services Group, they play a really important role to address these gaps we have in the workforce, and to help promote opportunities for Montanans to achieve their full potential.

Here’s some interesting stats, too. If you go back to the stats we have from 2018, the wait list for Montanans seeking disability employment services was 4,000 people. We have a new governor now in Montana. He was elected in 2020, and we’re now getting them off the wait list every week. In fact, we even expect that wait list that used to be 4,000 people to be completely cleared by the end of the year.
And again, these are Montanans seeking disability employment. So, we’re making some great strides post pandemic, and I’m proud of the work being done back home to that end.

Amy Scherer:

That is so great, and I love to hear those specific examples again. It’s wonderful to hear that about the wait list situation. And I can definitely tell you in other states that also have the VR program, because that really is a state and federal program in every state. But unlike Montana, a lot of the VR agencies are not doing such a good job of spending the money and getting people off the wait list and actually getting people into jobs in the community. So, really, congratulations to Montana for their efforts in actually creating the programs and spending the funds as they should be spent.

Michelle Bishop:

Okay, since we’re on the topic, I have to tell you, Senator, I’ve actually been to Montana. I’ve been to Helena a few years ago, and I loved it. I tell everyone, I had such a blast in Montana. It was beautiful, the people are really kind and lovely, and all of the food was delicious. So, that’s just a little something for our listeners. Highly recommend a trip to Montana in the future.
But speaking of our listeners, and a lot of the folks who listen to this podcast are actually disability rights advocates, most of whom actually work in our national network, organizations like Disability Rights Montana, who do this work. And I’m wondering what advice you have for what folks who are listening to this podcast can do to help promote competitive and integrated employment. Is there a role for advocates to play here?

Senator Steve Daines:

Yeah. Well, it’s a great question. It’s an important question. And I’ll tell you, the first thing I would say is first engage with like-minded people in your community, but also those who are not necessarily like-minded, and educate them and inform them about the issue and what needs to be done.

Because sometimes we can live on our own little worlds and not be aware of the need and the challenge that those with disabilities might have. And I think about what we also can do is support these businesses that are filling their employment needs with our fellow citizens who have disabilities. Find out which businesses are.

Again, I mentioned back home in Montana, it’s companies like Wheat Montana and Town Pump and Applied Materials. And there’s a lot longer list, but find out who they are and support those businesses, and let those businesses know you’re supporting them, and thank them for their support for working with those with disabilities to employ them. So, talk to your local businesses.

And most importantly, I’ll say this, pick up the phone or email your senator. Tell them to join Senator Casey and myself in this fight for fairness. Because I will tell you, as a US Senator, the most important person in any conversation during my day is the conversation with the Montanan, because that’s who we represent. So, pick up the phone, send an email, write a letter to your senator, and tell them to get behind this bill that I have with Senator Casey.

Michelle Bishop:

I’m so glad you actually brought it back around to Congress as well, because as we’ve been having this conversation, so much of what I hear you talking about, to me, it’s not a partisan thing.

The fact that people with disabilities want to work, the fact that Americans want to work and support our families, and be productive members of society, that is such a core American value in my mind. And so, I was wondering if you have any thoughts on how we can communicate the need for support of competitive and integrative employment, and equal wages for all people, in a way that is bipartisan without getting kind of bogged down in the politics.

Because this is an everybody value. And like you said, coming out of the pandemic, we have an employment crisis, and this sounds to me like the time for all of us to stand together on this issue. How can we do this in a way that’s bipartisan?

Senator Steve Daines:

Yeah. Well, first of all, you hit the nail on the head. This is not a partisan issue. Treating people differently based on their ability status is unacceptable. It really violates who we are as Americans, who we are as humans. And all Americans deserve the opportunity to join the workforce and to be fairly compensated at their job. I think you’d have to work pretty hard to find somebody who disagrees with that basic statement, and particularly when we’re facing a significant workforce shortage at the moment. So, it seems like we’ve got a solution here that’s not only right because of just principle, in fairness, it also helps us solve a problem that we face in our economy, which is a shortage in the workforce. We have untapped and undertapped labor that has great potential, and we need to get them in the workforce and fairly compensated.

But unfortunately, I think there’s just a gap in knowledge and understanding. Many people simply don’t know about this injustice. So, get the word out, make sure people know this is not acceptable, and Senator Casey and I are going to keep fighting to pass our bill.

And just for those who are listing and thinking about greater advocacy, let me just give you the bill number. It’s Senate Bill 3238. 3238. You need to put Senate Bill because there’s House Bills and there’s Senate Bill. Just reference S3238, and that would be what you need if you’re going to call or email or write a letter to your senator.

Michelle Bishop:

Senator Daines, thank you so much for joining us today. This has been a really fascinating look into these issues. And Amy, thank you again for joining us as well to help us talk this through. I appreciate both of you coming on and helping us kick off national employment month for people with disabilities. It’s like we said, there’s an employment crisis going on in this country. It’s time. It’s time to solve some of these issues, and it’s time to help people with disabilities who are willing and able get to work. Thank you so much for joining us, Senator.

Senator Daines: Well, thanks for having me, and really glad to be able to help educate your listeners, and thanks and advance to your listeners who are going to take action and advocate for this important legislation.

Michelle Bishop:

Well, thank you so much for joining us, Senator. That was amazing. What an incredible way to relaunch the PandA Pod, especially in light of our very first episode being during the employment month.
And let’s actually take it to our new segment, our spotlight story. We actually have Stephanie’s story that she has been itching to share with you all if you don’t follow her on TikTok. I do not. My TikTok is only for strangers. I like to watch dance videos. But, Stephanie has apparently been blowing up TikTok these days with her experience using rideshares. Stephanie, tell us about it.

Stephanie Flynt:

Yeah, sure. I mean, for starters, Michelle, I consider myself pretty strange, so I think you should follow me on TikTok. I’m just saying.

Michelle Bishop:

Noted. Noted.

Stephanie Flynt:

Yes. Humble brag. Humble brag. Yeah. So, I’m going to talk a little bit about my experience with Lyft and how it made me late for a work meeting. So, back in March, I was going to a meeting on Capitol Hill. Honestly, probably my first meeting on the actual Hill in person in what, maybe two years. I had come by the office to drop some things off. It was about 7:30 in the morning, and I requested a Lyft because I did not want to walk to the meeting. I think it was freezing cold. Trying to remember why I didn’t want to walk. It’s also about a mile, and I was wearing cute shoes, and I’m not going to ruin my cute shoes on these DC sidewalks. No. I’m not.

Michelle Bishop:

100% understand. You have to do all your commuting in sneakers and put your shoes in a bag.

Stephanie Flynt:

Exactly, exactly. And I just didn’t want to go off to the side, and these staffers… Because right now the way that the Hill is working is you have to call a staffer, and then they come down and escort you. So, that means that staffers are just kind of milling about. I don’t want anybody seeing me change in my cute shoes. It’s one of those secret things. Everybody walks around DC in their sneakers, but you don’t want anyone to see you changing into your cute shoes. And if you do see someone, it’s etiquette to just move along, pretend like you didn’t see it. La la la la.

Michelle Bishop:

That’s true. This is real DC insider information on the episode.

Stephanie Flynt:

Yes, yes.

Michelle Bishop:

All right. So, you didn’t want to walk in your cute shoes. Continue.

Stephanie Flynt:

Yeah, so didn’t want to walk in my cute shoes. So, I did what anyone else would do, I requested a Lyft outside of our building. And so, in requesting a Lyft, usually as a blind person, one thing that I do when the Lyft gets there is, I will call them and make sure that it’s their car, especially if I’m at a more busy place.

If I hear the car pull up, if I hear the car slow down in front of me, and the app ding, and there’s not really a lot of cars around, 9 times out of 10 it’s the car that I need, so I can open up the door. But we’re in DC, so there is a lot of traffic, there is a lot of noise, and so I’m not able to recognize what car is what.

So, I call my driver and I ask my driver if he is able to honk his horn so that I can find his car. Some drivers are not comfortable with that, which, understandable, especially being in a big city. But I also asked the driver to kind of keep an eye out for me. And the driver was like, “No, no.” And I’m like, “What is going on here?” So, he continues to say no. Finally relents and says, “Okay.”

And so, I’m trying to find the driver. I’m trying to figure out which car is his, and he just keeps telling me that he has a… I can’t remember what color his car was, but say he has a green blah, blah, blah, blah, blah, blah, blah. So, he has a green car, and he’s telling me how his flashers are going. And he’s like, “No, no, I can’t find you.” And he, eventually, after us kind of talking back and forth, I’m trying really hard not to lose my patience, and y’all, I had not had coffee by this point, so I think I did a pretty good job with that filter because usually it’s not existent if I don’t have coffee.

But the driver eventually said, “I don’t drive blind people around,” and hung up. And at this point-

Michelle Bishop:

Wow.

Stephanie Flynt:

Yeah. And at this point I’m just kind of overwhelmed. I’m like, “What am I going to do?” It’s 7:40, my meetings at 8:00, it’s rush hour in DC. It’s going to take me a minute to get to the building. Fortunately, I literally made it at 7:59.
But this is a prime example of transportation being something that isn’t always so seamless for individuals with disabilities. If I had had a car, I probably could have just jumped into that and driven over to the Hill. And now, granted, finding parking is a totally different story, but being able to get there in a more timely manner, and to have control of that. When you’re requesting rides like that, you don’t always have control.

And that’s just kind of an example of part of, I would think, why maybe employers would be worried about individuals with disabilities working in the workforce. These things that we cannot help, but that rideshare companies can help and ensure that individuals with disabilities, or even individuals in other minority communities, are able to get to and from their destinations without hassle.

Michelle Bishop:

So, how is it going advocating on TikTok?

Stephanie Flynt:

It’s interesting. I have actually gotten a little bit of attention, particularly from drivers who really are concerned about the policies, and they don’t understand the policies. I’ve noticed that with Uber, it’s actually the drivers are not as understanding of the policies.

So, Lyft seems to be doing a better job at educating their drivers on what the policies are, but I’ve seen that the drivers in their comments on my videos, are not necessarily educated on the policies, thinking that the law is optional, that the ADA is optional.
And taking individuals with disabilities in a rideshare is required under the ADA, including individuals with service animals. And so, we’ve been seeing, sadly, a lot of confusion. And so, I’m glad that I’m kind of helping to straighten some of these things out for those individuals. I’ve gotten messages from folks thanking me for clarifying these things.

I’ve also gotten messages from folks that are like, “Thank you for clarifying. Now I’m no longer going to drive for the company.” So, that’s been kind of interesting to see. But hey, at least they’re, I guess, following the law not driving, which is so terrible. It’s one of those things where that’s an essential function of your job at that point. You can’t just choose not to take someone. And at that point, if you’re not able to for whatever reason, then that’s an essential function of your job, then that means you can’t do your job, sadly.

Michelle Bishop:

And in this part of the country, that’s a major way that people get around.

Stephanie Flynt:

Absolutely. And in rural communities, that’s a major way that people get around. I’m very fortunate that I do live in DC. Well, I live in the Maryland area, but I live close enough to a metro station that I primarily can use the metro or public transit, the buses around the area.

But not everyone is as lucky. And I grew up in Mississippi, which meant that there was no such thing as public transportation. So, when people with disabilities in rural communities such as those in the state of Mississippi, or even the communities in Washington state that don’t have adequate public transportation, not being able to actually have the reliable transportation that’s needed, and not knowing if they’re going to be able to actually get a ride to their destination, or if they’re going to get discriminated against when they request the ride, it definitely can be anxiety producing.

Michelle Bishop:

I didn’t realize you were in Maryland. I’m in Virginia, so this is awkward. This means we are contractually obligated to beef with each other. It’s a whole Maryland-Virginia thing.

Stephanie Flynt:

Oh, yeah.

Michelle Bishop:

I know. This might be the end of the road for our beautiful friendship, Stephanie. I’m so sorry, but, I mean-

Stephanie Flynt:

It’s okay. Go Ravens and Old Bay.

Michelle Bishop:

I’m still coming to visit Nala, the service dog, though.

Stephanie Flynt:

Yes, yes.

Michelle Bishop:

Yeah. So, we’ll try to keep this-

Stephanie Flynt:

It would be very helpful. Yes.

Michelle Bishop:

… try to keep this copacetic.

Well, that was… I mean, if anyone else out there who’s listening, if you’ve had some of these experiences, or you have a spotlight story that you want to share in a future episode, you’ve got something going on that you’d love to see featured in our network updates from in the news, we’d love to hear from you. We can put some contact info in the notes with this podcast episode. Maybe we’ll even tell you where you can find Stephanie’s totally unassociated with NDRN TikTok account.
And with that, welcome back to the PandA Pod, everyone. We’re so excited to have you back. We are going to be launching new episodes on every month, so keep coming back. And if you’ve got some ideas for future episodes, let us know. We’ve got some things in the works, but we want this podcast to be as helpful as it can be for you all. So, please don’t hesitate to reach out if you’ve got ideas, or you’d like to be featured on a future episode. We’d love to have you.

Stephanie Flynt:

We would love to work with you.

Michelle Bishop:

Yes, absolutely true. Jack, is there anything we’re missing, before we wrap up today?

Jack Rosen:

A couple of producers notes. NDRN is now on LinkedIn. And to celebrate National Disability Employment Awareness Month, we are going to be doing a series of posts educating people with disabilities and employers about the rights of people with disabilities in the workplace. We’re going to cover everything from the interview and hiring process to, “Okay, now I’ve been hired, but I’m having these accommodation issues,” or “I’m being discriminated against. What can I do?” So, be sure to follow us on LinkedIn. And, as well, you can check us out on Twitter, Facebook, and Instagram.

Michelle Bishop:

Well, thanks everyone. Please do join us next month. For November, we’re going to be talking about the midterm elections and getting ready for Election Day. Thanks, everyone. We’ll see you next time.

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Let’s discuss Competitive Integrative Employment! In this episode of the PandA Pod, Cheryl Bates-Harris, NDRN’s Senior Disability Advocacy Specialist, provides recommendations and actionable steps for employers to transition from a segregated model to a competitive model for workers with disabilities.

Transcript

Xuan Truong:

Hi, everyone. Thank you for joining us on the PandA Pod, here at the National Disability Rights Network. My name is Xuan and I am the summer 2021 policy intern, here at NDRN. Today, we have our very own Cheryl Bates-Harris for a conversation around competitive integrated employment. Thanks for joining us, Cheryl.

Cheryl Bates-Harris:

Thank you for having me, Xuan, I appreciate the invitation. I’m Cheryl Bates-Harris with the National Disability Rights Network. And, once upon a time, I worked in a sheltered workshop and thought that it was, probably, the best thing since sliced bread. But, that was about 35 years ago, before I started to understand that sheltered workshops are isolating individuals with disabilities, paying them sub-minimum wage, doing menial work that large businesses typically don’t want to do, so they think they’re doing a favor by sending work to sheltered workshops. And, I think my lesson from working in a sheltered workshop was that there was very little interest in actually promoting these people and allowing them true opportunities for employment.

While I was there, I did job placement and I thought my job was to place people with disabilities into competitive integrated employment. And yet, when individuals who were working in the sheltered workshop came to me and asked me to help move them into competitive employment, I was called into the principal’s office, i.e. the executive director’s office, and told to leave our employees alone. We needed them to complete the contract work that we had, and that my job was to work with the individuals who came through our training program. So, consequently, I moved on from there because it just didn’t seem right that some people were being offered the opportunity for real jobs, and yet some very capable individuals in sheltered employment were basically stuck there for life because nobody wanted them to leave.

Xuan Truong:

So, let’s say if a sheltered workshop wanted to change their model to a competitive integrated one, what does that look like?

Cheryl Bates-Harris:

That’s an interesting question, and that’s something that isn’t going to happen overnight. First of all, it is going to involve a paradigm-shift of thinking that people with disabilities no longer need to be segregated and protected from the real world. So, it would require some philosophical changes in thought and convincing, or having, the staff at the agency adopt and believe in the full employment of people with disabilities. And then, from there, some additional resources and some creative thinking in terms of the fact that when you’re running a sheltered workshop, your staff ratio is typically one staff person to every 15 or 20 individuals in order to really do competitive integrated employment. Jobs are obtained one person at a time, so it’s much more labor intensive in terms of staffing ratios, lower staffing ratios, it’s going to require some additional resources and some funding.

I think the other part of it is also that staff who have traditionally worked and supervised employees in a sheltered workshop are used to looking at things from a production standpoint. And, when you convert to competitive integrated employment, you need to look at it through a human resource development lens, which is a whole lot different and will require some training in order to up-skill the skills of the individuals that are working with people with disabilities. So, it’s a gradual process. It’s not something that you can do overnight, but it’s really important that it occur because young adults of today have benefited from free public education and their expectations are, they don’t want to perpetuate the old thinking and focus on the disability. They want real opportunities.

Xuan Truong:

So, let’s say if a sheltered workshop wanted to transition out and they wanted to really help their employers find other employment, what resources or supports are available to those employers?

Cheryl Bates-Harris:

The first place that I would start, if I was a sheltered workshop, would be by contacting the businesses that we are doing contract work for because, clearly, the work that goes into a sheltered workshop is legitimate work that some business needs done. Now, the fact that they send it to a sheltered workshop to do, out-of-sight, out-of-mind, doesn’t negate the fact that it is legitimate work. So, I would start by contacting those businesses and saying, let’s change our business model a little bit. Instead of you sending this work to the sheltered workshop, where we warehouse the materials, we supervise the employees doing the work, and we just give you a finished product, how about hiring a few of our individuals to do that same work, but instead of doing it for us, they do it for you, as a regular employee within your facility.

And, I think that you will find that once people with disabilities get into the real business or the real job setting, that they have skills far beyond what anybody imagined, and people will demonstrate a natural interest in the work that’s going on around them. They’ll be able to interact with people and their curiosity will allow them to demonstrate that there’s other things that they can do besides just the menial part of the labor that you send to the sheltered workshop. But, of course, employers may be reluctant to hire them because they’d never dealt with a person with a disability and like, “Oh my God, what happens if they can’t do the work?” Or, “What happens if they hurt themselves?” The sheltered workshop could offer support in the form of job coaches that go into the business and support the people with disabilities that are working there.

And, when I mean support, it’s not doing the job for the person with the disability, but demonstrating to the person with the disability how the work is done, what they need to do with their work product when they’re finished with it, encouraging them to work a little faster, or to stay focused. And, it can also be things like helping the person organize themselves so that they can get to the work site, because, oftentimes, it’s the bus that’s picked them up in the morning and taking them to the sheltered workshop. Now, they may need some travel training in order to be able to utilize what public transportation is available. Now, their work hours might shift a little bit, so they may need some reminders or ticklers to remember that you have to now go to the bus stop 30 minutes earlier. There’s all kinds of supports that a job coach can provide to the individual who’s working to make sure that they are successful.

And, it’s also reminding the employer that there are public supports that are available. For instance, if somebody demonstrates an interest in doing a particular job, and I’m going to use an example of, say, operating a piece of machinery, but they have limited motion or limited use of one particular hand, it’s possible that through the job accommodations network, they could look at what are some possible accommodations to the particular job of that person that could be done. So, many of the accommodations that a person might need to be successful don’t cost a lot of money, but if you’ve never done the accommodation before, you don’t know what it is, and there’s lots of experts out there that can help with that. There’s also something called the “disabled access credit” that actually would allow the employer, who’s paying the normal wages, access to tax credits in order to make modifications to their work site, in order to encourage and enable the employment of people with disabilities.

So, the change from sheltered workshop to competitive employment can be a little bit complicated, but there’s lots of resources out there to help. What we really need, though, is for businesses to believe in the full employment of people with disabilities and to also not discriminate against people with disabilities, who are otherwise qualified to do the work. And, many individuals with disabilities have no idea what they’re capable of doing because they’ve never had the opportunity to do anything other than the prescribed work in the sheltered workshop.

Xuan Truong:

When a competitive integrated employment is implemented, what does that look like?

Cheryl Bates-Harris:

That looks like individuals with disabilities working in the same jobs as their non-disabled peers, earning the same wages as their non-disabled peers, having the same benefits as their non-disabled peers, and individuals with disabilities obtaining a job. One job at a time. One job equals one person. It’s ceasing to do the group placements of people where we’re going to place six or eight people doing landscaping for rest stop areas. It’s competitive integrated employment is what each of us get. We apply for jobs, we interview for jobs, and we’re hired, and that should be exactly the same process for people with disabilities, because they have the ability and have demonstrated there’s thousands of jobs in the U.S. economy that people can do, but you’re not going to get competitive integrated employment if we’re still thinking that everybody needs supervision and everybody has to work in a group where that supervision can be closely provided. So, it’s one person, one job, real wages.

Xuan Truong:

So, explain to us why CIE, or “competitive integrated employment”, is beneficial. You gone into why it’s beneficial for the persons with disabilities. What about the employers, or society as a whole?

Cheryl Bates-Harris:

Well, this country is really at a critical error where there is, believe it or not, a shortage of the labor market. And, there’s going to be a huge retirement tsunami of the Baby Boomers. So, many businesses have had to look towards both immigrants for filling positions, as well as senior citizens. There’s lots of jobs out there, there’s lots of new growing areas in the economy. And, employers are only going to make money if they get their business needs met, and people with disabilities can be significant contributors to their bottom line. We’re not asking employers to hire somebody just because they have a disability, we’re asking employers to hire people who are otherwise qualified to do the work, would love to do the work, and will contribute to their bottom line.

So, there’s lots of people who’ve been denied the opportunity to work, and they really want to, and we are well beyond the days where we believe that segregating people and being very paternalistic to protect them is the right thing to do. It’s not. Competitive integrated employment means that people will be contributing to their economy, they’ll be paying taxes, they’ll be participating in their community. It’s just a much better option than keeping people in poverty by paying sub-minimum wages and keeping them in segregated employment where they don’t get the full benefits of participation in society.

Xuan Truong:

Are there examples or models of CIE that are out there that exist?

Cheryl Bates-Harris:

I think there are lots of different models, and there is not necessarily a right way or a wrong way to do it. I think a lot of it really has to do with commitment of, and belief of, the ability of people with disabilities. One very, very good model, that I really like, that leads to or contributes towards competitive integrated employment is the project search model. And, the project search model originated out of the children’s hospital in Cincinnati. And, what they did there was they brought a number of individuals with very significant disabilities into the hospital setting for basically a nine-month period of time and, I believe, there were three periods of rotation. And, instead of bringing these people into the hospital and saying, “We’re going to teach you how to do housekeeping”, they actually place them into different areas of the hospital where there was a need for work to be done.

For instance, sterilizing and putting together kits for individuals that would be undergoing surgery, filling the inventory supplies throughout each of the nurse’s stations, there. One of the positions involved taking apart and disinfecting, and then reassembling, the incubation neonatal intensive care unit, putting those together. And, though it’s bringing people into areas and training them how to do the jobs that are specifically needed in the hospital. That’s how project search started. But now, they’ve expanded to all kinds of different occupations. There are project search units on utilizing different banking skills and customer service jobs. The Department of Transportation in Delaware has a project search unit where they have people working, everything from planning and development of new transportation, to helping develop transit routes, their system for managing and dispatching. I mean, those kinds of things. So, project search gives individuals with significant disabilities an opportunity to actually try different kinds of jobs that lead to real jobs within the community.

One of the key components to competitive integrated employment is really taking a look at what are the individual’s skills, and many individuals, if you asked them, “What do you want to be when you grow up?”, they’re not going to be able to tell you because nobody’s ever asked them that question before. So, really taking the time to develop, “What is this person all about? What gets them excited in their day? When do they really light up?” So, when you can develop and build a picture of what are they really interested in, what do they really like, then you can start to think creatively around what kind of job would be appropriate for that person that’s going to match their skills and their interests. So, the real big point with competitive integrated employment is it’s a one-on-one process. And, it does require some thinking if people are self-directed and they can identify their skills and their interests, then those skills and interests should be acknowledged and not ignored.

And, people should not be scripted into jobs they don’t want to do. Different states have approached competitive integrated employment differently. And, employment first is the original impetus towards moving to competitive employment because employment first is a philosophy, first of all, that believes in the first dollar of support should go toward supporting employment. And, what it does then, is it directs agencies, all of the agencies, the State Vocational Rehabilitation Agency, the Medicaid agency, the Department of Education, the Office of Developmental Disabilities, or whatever it happens to be called, and even the Social Security Administration, to work together to focus the dollars for support on moving people into individual jobs, real jobs, real wages.

Xuan Truong:

What can listeners do to find out more about what’s going on in their state?

Cheryl Bates-Harris:

I think there’s a number of things they can do. Certainly, there is legislation that is happening across the country around eliminating the legality of paying individual sub-minimum wage. And, there are seven or eight states that have eliminated sub-minimum wage. The elimination of sub-minimum wage, I firmly believe, will further contribute to the employment of people with disabilities because businesses will no longer be able to take advantage of people with disabilities and make lots of money on the backs of people with disabilities. So then, the whole concept of segregation loses its shine. And, if you’re paying higher wages, then employers will start to think that maybe we don’t have the capacity to keep employing these people in a segregated setting. So, I think looking at some minimum wage laws is one of the issues, certainly tracking and looking at how are the different departments of the state spending their money.

For instance, Medicaid dollars are notorious for supporting segregated employment. Do we really, in the year 2021, want to continue to use federal dollars to basically keep people in poverty by segregating them and holding them to a low standard of behavior or expectation? You can also look at some of the grassroots organizations in your states. APSE, which stands for the Association of People Supporting Employment, first, is probably the only national organization whose sole focus is on the employment of people with disabilities. Certainly, looking at and challenging your state Vocational Rehabilitation Agency. Ever since 1973, there has been a stipulation in the Rehabilitation Act that says if a VR agency does not have enough money to meet the needs of all applicants and/or clients of the state Vocational Rehabilitation Agency, then they are to provide services to individuals with the most significant disabilities first, and, historically, individuals in segregated employment have never been to vocational rehabilitation. They’ve never collected $200 worth of services.

And so, the VR agencies in not providing services to individuals with most significant disabilities are failing to meet the intent. So, holding your VR agency responsible for providing services, as they’re required, and having the VR agency send other individuals with disabilities, who may just need a job, sending them to the generic workforce system, instead. People need to understand that if you’re a person with a disability who just needs a job, you don’t need VR services. And, the people who do need VR services should no longer be shuttled to a sub-minimum wage employer. So, it’s making sure that everybody is held accountable for fulfilling the mission of what they’re supposed to do.

Xuan Truong:

So, in closing, what is one thing that you want listeners to take away from this podcast?

Cheryl Bates-Harris:

I want people to understand that people with disabilities are just like everybody else, that they all have skills and talents that they can contribute to employment, that they can make contributions to society, that they can work. And, it’s time that we start looking and assume the full employability of people because, quite frankly, most of the people who are in segregated employment settings and are being paid sub-minimum wage, are recipients of SSI, supplemental security income. And, in some instances, social security disability insurance.

When we keep people in segregated employment and/or out of employment, we are dooming them to a life of poverty, and the ADA gave us the promise of full inclusion into both the social and economic landscapes of the land. And, until we allow people with disabilities to work to their full potential, we are dooming them to a life of poverty. And, I do not believe that life of poverty is really what we want for our children or our family members who have disabilities, and competitive employment is a viable option. We just have to believe in the value of people with disabilities and stop treating them like second-class citizens who do not deserve time or investment.

Xuan Truong:

That was beautiful. Thank you so much.

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We’re doing it for the gram… Erika’s Grandma, that is. Join as we sing goodbye, crown a new reigning queen of bad puns, and send Erika off to Sweden.

If you want to get a Panda Pod music playlist curated by Erika, Justice, and Michelle, send your song suggestions to info@ndrn.org with the subject line: Podcast Playlist.

Transcript

Michelle Bishop:

Hi, everyone. Welcome to the worst episode of the PandA Pod ever. And that’s saying a lot,` because we have a tendency to talk excessively about disaster on this podcast. I am one third of your host, Michelle Bishop, with Voter Access and Engagement Manager here at NDRN. Justice, tell the people who you are.

Justine “Justice” Shorter:

I am Justine “Justice” Shorter, otherwise known as Justice. I am the National Disaster Protection Advisor, here at the National Disability Rights Network. Hello, everyone. Happy to be here.

Erika Husdon:

You all that was extraordinary. We didn’t even prepare for that. This is Erika. You’re third of the third. Can I say that? Third of the third? Is that a thing?

Justine “Justice” Shorter:

Sure, go with it. Yeah.

Erika Husdon:

I like it.

Michelle Bishop:

I’m not sure but do it.

Erika Husdon:

Let’s do it. I am Erika Hudson, Public Policy Analyst at NDRN. And I guess this will serve as, well, I don’t even want to say it. I don’t even want to say this will be my last podcast on the PandA Pod.

Michelle Bishop:

Tell the people. Tell the people why this is the worst episode ever.

Erika Husdon:

I don’t know if we’re going-

Michelle Bishop:

Reap the bandaid off Erika. Drop it.

Erika Husdon:

We’re going to make it the best PandA Pod episode. That’s the … I’m headed out. I am leaving to go to grad school, so I will be missing all these extraordinary people on this podcast and you all. But I’m very grateful that I can jump on one last time. Not last time. I’m hoping you will bring me back as a guest one day. That’s going to be the plan.

Michelle Bishop:

Justice, do we have sad violin music-

Justine “Justice” Shorter:

No, but I can always just break out with Boys II Men. You know what I mean?

Michelle Bishop:

It’s time.

Justine “Justice” Shorter:

Okay. [singing]. Okay.

Michelle Bishop:

I don’t know if you can hear me snapping in the background you all. It got real. And to this day, I don’t even know if Erika knows Boys II Men.

Justine “Justice” Shorter:

Yeah. It’s unfortunate.

Erika Husdon:

I have tears in my eyes.

Justine “Justice” Shorter:

It was fun.

Erika Husdon:

That was the most beautiful thing ever.

Justine “Justice” Shorter:

It’s funny, because I was literally about to hit with the Tevin Campbell and I just felt like I should just be asking … It’s a whole other song and it has nothing to do with her leaving. But Tevin Campbell is dope and I feel like it’s somehow the same time. But I just wanted to get into that, but it’s fine. We’ll save it for another-

Michelle Bishop:

… She knows who Tevin Campbell is. She’s Swedish American. She’s spent way too much of her life, listening to ABBA. She doesn’t know these artists.

Justine “Justice” Shorter:

Like I said, we gone have to get you up with a playlist before you leave on the PandA Pod playlist.

Michelle Bishop:

Yes.

Justine “Justice” Shorter:

If you guys have recommendations, feel free to send them in to an email address that will be provided in the show notes..

Michelle Bishop:

Modified playlist. Yes.

Justine “Justice” Shorter:

There’s no way for me to know if we have show notes, but it’s fine.

Michelle Bishop:

And it’s also just going to be a lot of ’90s R&B clearly.

Justine “Justice” Shorter:

Clearly. And a couple Swedish sweet songs thrown in there as well. With Erika’s recommendations. I think we can do this. But there’s so many great things to discuss. And there’s been so many updates. My goodness folks, since we’ve been on the Pod together, it’s been pretty much a year since the three of us have been joined together in conversation. So I’m really eager and elated to hear what you all have been up to.

Justine “Justice” Shorter:

I mean, we’ve had a whole election, we’ve had multiple disasters. We’re still currently dealing with concurrent crises, everything from the COVID pandemic, to now being in hurricane season. To also thinking about wildfire season and excessive heat waves. And so many different things for us to unpack and for us to think about and to be aware of, as we continue on doing the work to protect and advocate on behalf of and on directly beside people with disabilities. So I’m excited for today’s conversation.

Michelle Bishop:

Honestly, last time we spoke, it was so long ago. You might’ve heard there was a little election that happened.

Erika Husdon:

Wait what?

Michelle Bishop:

Between men and now … There was, there was. If you felt like it was supposed to end in early November and it somehow went through January, you are not alone. That dragged on for a long time. But actually the cool thing is, and we’ve been sharing a lot of information about this with the network. We made so many changes to how we run our elections based on COVID, that it actually has this side effect of making elections more accessible for people with disabilities.

Michelle Bishop:

Because we did things like making it easier to vote by mail, or letting you drop it off at a drop box, or letting you vote curbside, all these things that they did for the pandemic, that maybe we should have been doing all along, that made voting a lot more accessible. So as contentious and strained as this election was, we actually probably made some awesome progress on really realizing the promise of the ADA and HAVA when it comes to elections.

Michelle Bishop:

But of course, that means we’re now seeing a lot of backlash in the states. And having to work very hard to make sure that all those things stay in place and that they don’t get taken away in the state legislatures. I know Erika has been doing a ton of work on this. I think that’s probably Erika, I assume that’s the part you’re not going to miss.

Erika Husdon:

Yeah. Let’s just put it that way. Speaking of the ADA, happy 31st birthday coming up to the Americans with Disabilities Act. Right? Perfect timing that we’re all talking about this and it’s so surreal that we all met right before everything changed in Justice’s office. And talked about voting and emergency preparedness and the 2020 census. I remember-

Michelle Bishop:

We talked a lot about disasters and we didn’t know one was coming.

Erika Husdon:

No. And I think … Yeah. So here we are and the fact that the 2020 census wrapped up, but it’s still ongoing since we’re still looking at that data. And we just recently found out a few months ago, the initial population counts for every state, which was pretty exciting to see, but also emphasize the importance of being in the 2020 census. I think New York lost a seat in the House of Representative, by less than 30 people.

Erika Husdon:

Meaning if 30 more people had either been counted, or if they weren’t missed in the census, which arguably we won’t know for a while, that’s how New York lost a seat in the House of Representatives. So again, it’s emphasizes the importance and ties it all in together, right? With voting and emergency preparedness, given that the pandemic was happening during the count.

Justine “Justice” Shorter:

Yeah. I want to actually pull on that thread. The both of you have kind of mentioned the changes that come in the midst of a crisis. And of course, I’m always trying to be vigilant of these things. Because sometimes those changes are for the better and sometimes they make things drastically worse. So you mentioned a bit about the backlash that came in terms of voting. Can the two of you talk to us a little bit about the things that you want to keep, the things that you hope to sustain in terms of what has come out of COVID.

Justine “Justice” Shorter:

Michelle, you talk about some of those great changes in terms of voting rights. Are there any other things that you guys are noticing? Even if it’s outside of your typical portfolio for NDRN, but just things that you have noticed in terms of the disability community, that you really hope will stick around. Even as the country starts to shift into a different posture, as it relates to the pandemic, right? Things will be opening the spikes the prevalence of the Delta variant and of course, trying to maintain that and get that under control.

Justine “Justice” Shorter:

But more and more people are becoming vaccinated every day and things are starting to widen up a bit more. But what are you guys are hoping we’ll either stick around, or that we’ve gained during the pandemic?

Michelle Bishop:

Erika.

Justine “Justice” Shorter:

And what are you hoping will change and get better?

Michelle Bishop:

I’m hoping Erika will stick around. Is it too late?

Erika Husdon:

That was good. That was really good.

Justine “Justice” Shorter:

Yeah. I had no clue what was happening either, but I’m thinking what are you putting down. Well, what are you two thinking?

Michelle Bishop:

Well, I think we did … I talked about it in the elections world, but even in general, we really had this movement towards, you can get things delivered, you can pick things up curbside. And I think that has a benefits for all types of folks who may not be able to get out of the house, or get to some of those places, or those places may not be fully accessible to them, or they might just be someone who’s immunocompromised who really would benefit from limiting their exposure more in general.

Michelle Bishop:

And I think that we shouldn’t rely on those things, right? We need to make everything fully accessible. But I guess what elections has taught me, is that I love the idea of options and everyone should get to pick the option that’s really going to make it work for them. And I think the more we’ve created those, I hope that they stick around and we keep thinking that way in terms of just here’s a smattering of options. Pick the thing that’s going to make this work for you and go live your life. And again, participate fully in your community.

Erika Husdon:

Right. And I mean on that too Michelle, right? I think including myself, I’ve said, “Oh, I can’t wait until things get back to normal.” Right? I mean, I know I’ve used that expression. But the reality is, why not better? Right? And there’re some of our colleagues within the disability community, who’ve said that too. And been fantastic at being open and honest about that conversation.

Erika Husdon:

Before, things weren’t necessarily the greatest if you look at certain aspects. Whether it’s the flexibility with working from home for various reasons, or just access to telehealth that I feel like has become more prominent now, following the pandemic. Let’s get back to better. I think that sounds really exciting and people are working really hard to get there. So I think that’s something I’m excited about what the future holds.

Justine “Justice” Shorter:

Indeed, so am I. I think there’s just so much work that has been done and so much work to continue to do. And just in terms of the network, there has just been a groundswell of advocacy and activism and work around rationing, right? And making sure that policies and procedures and practices concerning health care for individuals with disabilities, that those systems were not continuing to be structured in a way that wasn’t equitable for people with disabilities.

Justine “Justice” Shorter:

And then when you merge that, in relation to Black indigenous and people of color with disabilities, that is a different conversation. When we look at some of those disparities and we look at the impacts and the numbers and the differences of how those things bear out geographically, how they bear out in terms of sexual orientation. And then also of course, what it looks like when all of those things intersect.

Justine “Justice” Shorter:

When we talk about race, when we talk about gender, when we talk about sexuality, when we talk about disability, when we talk about all of those things simultaneously. Because we live these holistic lives, right? We don’t live these single issue lives. And so thinking about that in a true sense of the word of intersectionality and its meaning around compounded forms of oppression, this is what the pandemic revealed for many.

Justine “Justice” Shorter:

And it affirmed for others, right? Others who have been saying this and who have been screaming these messages from the Raptors for decades. It had amplified their voices even more. No longer could their commentaries and their stories be cloaked in darkness and disbelief, right? And disparaging these individuals in terms of what their true lived experiences were. Saying, that this is not real because it’s not happening in massive amounts of numbers, right? It’s not impacting the masses. So in that sense, it’s not real, or it’s not relevant.

Justine “Justice” Shorter:

So many people have been receiving these messages in one way or another, whether it be implicit or explicit. And I think the pandemic has done a lot to move us forward in a measurable way. So I’m excited about that. I’m excited for the conversation and the concentration around making sure that those who are the most impacted, remain at the center of how we shape and how we sculpt things, right? And that really invigorates me. And I’m hoping that once things continue to open up and unveil itself in different ways, in terms of this new reality that we’re all trying to build, I’m hoping that that won’t be forgotten about. Right?

Justine “Justice” Shorter:

And I think a lot of folks from where I’m from, we typically say, we’re not new to this we are true to this. We’ve been talking about these issues before 2020, we’ve been talking about during 2020s, talking about in after 2020. This is just who we are as a people, that is our story, it is the ancestry, it is the history. And making sure that those narratives don’t get lost. And this highly focused obsession with normalcy and wanting to get back to the way things were, which were not great for everybody. And that was the problem.

Justine “Justice” Shorter:

And we saw how much worse they could get for everyone else, when we start to see it in connection to large scale, catastrophic events, such as a public health crisis, like the one we’re dealing with right now, as well as other events that are taking place. I’m really thrilled that you all mentioned that because it’s something that we want all the listeners to just remain vigilant of in your advocacy and your work. Please continue to stay the course and to chart new territory.

Justine “Justice” Shorter:

And going places, going directions that other people have not been. Sometimes it can be as simple as getting together with two of your home girls, or two friends, or two work colleagues and having a conversation about what are the needs? Right? What can we do? How can we move outside of what has become the status quo, in order to make some real substantive change? And those conversations do something to you. They change you both personally and professionally. And so, that is only my personal testimony because it’s happened for me and so I hope that it happens for you. And let us know what we can do to help you come through.

Michelle Bishop:

Well, I would have dressed nicer for today’s episode if I had known we were going to church.

Justine “Justice” Shorter:

I’m just saying. Put everything down.

Michelle Bishop:

Because you did preach, Justice.

Justine “Justice” Shorter:

Put everything down. I’m just saying. That is so much-

Michelle Bishop:

But I feel you though. I mean, I don’t know if I … We keep talking about going back to normal and I ordered an air purifier and had it sent to the office. So I don’t know if I’m all that interested in going back to how things were in particular. But I hope people start staying home when you feel sick, instead of going into work, or wherever and potentially getting people sick. I hope I still see people wear the mask on the Metro, if they do have to go out and they aren’t feeling well. Right? I mean, I think hopefully the thing the pandemic has taught us, is that we can do things to take care of each other, to make each other’s lives better. Right? And keep each other safe. I hope that comes out of this.

Justine “Justice” Shorter:

Oh my goodness. And you talked about something great. Erika, I want to get your thoughts on this too, about workplace accommodations, right? People with disabilities, all of a sudden we can tell them … And people have talked about this extensively right, over the last year or so. I’m like, oh my goodness. Things that we have been fighting for for years, the exact reasons why we were refused certain positions.

Justine “Justice” Shorter:

Saying that telework wasn’t an option. And we couldn’t get things done remotely. And I couldn’t do my job in this way or that way. All of a sudden it became available to everyone. Are there other workplace accommodations, or things that you’ve noticed just in your conversations, or your dealings with people with disabilities, that you’ve noticed have been really, really great attributions, or additions that you hope stick around?

Erika Husdon:

Yeah. And Justice, thank you so much for sharing everything that echo just what Michelle said. Thank you. This is what we always need to have these conversations on the regular basis ya’ll. And come together and talk about exactly this. And I think there’s a lot of different avenues that we can take in terms of workplace accommodations, or the disability community using politely the expression, I told you so. In the sense that things can be better and they should be.

Erika Husdon:

And it’s not even work. Right? It’s just all the things. I think I’ve heard numerous stories of people being able to see musicals for the first time, because they were hosted virtually right? Or concerts, something that is really exciting and more inclusive. And I think it gives us the option just like Michelle said, why not have options that work for everyone? And I know we are all at home right now doing this, which is really exciting, but just figuring out what works best for everyone, I think is the best solution.

Erika Husdon:

Although I miss seeing everyone, but all intensive purposes and being in the same room, this is also pretty awesome in my opinion. So just figuring out what’s best for everyone. But I’m curious … I don’t know. That’s a good question. What else, in terms of work accommodations. I feel like I need to have a better response to that then.

Justine “Justice” Shorter:

No, that was a great

Michelle Bishop:

Sorry. Did anyone else notice that Erika said, you all are at home doing this right now? Where is Erika?

Erika Husdon:

Oh, I’m at home. I’m currently … No, I should be more explicit. I am-

Michelle Bishop:

She’s already in Sweden isn’t she?

Erika Husdon:

No, right. Wearing pajama pants still, to be completely transparent.

Justine “Justice” Shorter:

I am all about it. I am wearing basketball shorts, which has been my uniform. Yeah. It’s been my summertime uniform, because it’s so hot in D.C. And that’s another thing about thinking about the weather and thinking about the environment. The heat waves that have been going across the country. I think D.C. yesterday was around 95. Where I’m from, my hometown Milwaukee, Wisconsin was 93. Texas is, and areas around the South are triple digits, right?

Justine “Justice” Shorter:

So in California triple digit numbers that folks are noticing. And that has some real difficult and heavy effects, specifically as it relates to individuals with disabilities, is trying to find cooling centers and getting transportation to these places. It is issues like this, that really stand out in my mind. And it’s primarily because they sometimes don’t make the same level of impact in terms of media attention, right? They don’t sometimes get the same level of attention as a really big storm would get, or perhaps as a massive wildfire would get. But they also really impact the lives and the wellbeing of people with disabilities. So it’s a huge issue. And I’m hoping that people will also have the opportunity to stay cool, because that’s a conversation that sometimes gets overlooked.

Justine “Justice” Shorter:

But in terms of what you were saying also, Erika, I also completely agree that it should not just all be about work, right? And we also have to understand that people with disabilities and people, even those who do not have disabilities, your worth is not tethered to your work. Do you have inherent worth as a human being holistically? And so to honor and understand that.

Justine “Justice” Shorter:

And so all parts of how you find joy and pleasure in life, is important. Like you were saying Erika, the theater shows. My goodness I miss theater, concerts, things like that. People having access to those things virtually, is a huge deal. And also being able to, once things open back up, having the option to go there in person and making sure that access is provided in those physical spaces, just as much as they’re hopefully going to remain some degree of access in virtual spaces as well, would really be monumental to make sure that people can continue participating in all parts of life. That they deem appropriate and important for them.

Erika Husdon:

Right?

Justine “Justice” Shorter:

Which is a great point.

Erika Husdon:

That was good. I love how the segues are happening. It’s like we’re host of the PandA Pod. And also, I will say, when you said monumental, I thought that was appropriate because we were like, we’re in D.C., monument. You know what I mean? Had to throw that out there.

Justine “Justice” Shorter:

On the nose. On the nose yeah.

Michelle Bishop:

It’s like she can’t leave without doing a pan.

Erika Husdon:

No, [inaudible 00:20:09]. I think you’ll just have to be ready for all the fruit cushions that I’ll leave behind for you all. So you’re welcome in advance. But I think that’s a really good point. And I know we talked about a lot of serious things during the PandA Pod, but also I love to hear about what people are passionate about outside of all the important work that they do. And what they find joy in. And I think for some, including myself, that was amplified during the pandemic and during everything that happened in 2020.

Erika Husdon:

I know I started baking a lot so that was wonderful. And I found camping, which I know based on our conversations, that’s not everyone’s favorite on this podcast. But all I’m saying is that, what I found to be amazing. What did you all do? Anything in particular that you found joy in during the pandemic?

Michelle Bishop:

Okay. First of all, camping just sounds like how you die in a horror movie and I’m sticking to that. I have seen enough 80 slasher flicks, to know that that holds up. But I’ve probably, over the past year, have spent more time with my baby nephews who are four and about to be two, than I ever could have imagined. And they are hilarious and wonderful and give very good hugs.

Justine “Justice” Shorter:

I know. Awesome. Oh my God, kids give the best hugs. My nephew who’s eight years old, actually just recently told me that I needed to breakup with D.C. So it’s just like, you need to stop going back and forth to D.C. He’s over it. He lives in Milwaukee and he’s just done. It’s like, you need to break up. D.C. is no good for you. It’s a wrap. He’s not feeling it anymore. The kids are just amazing.

Michelle Bishop:

We’re already moving inter-coast. I need your nephew to back up a little bit. Okay?

Justine “Justice” Shorter:

He is so passionate about this. Actually, in thinking about people with disabilities as whole people and what’s whole lives and multifaceted lives, another thing I’ll be quite candid that has really given me a lot of joy, is to notice love, right? Just people, whether it’s love for family members, just people coming together on Zoom calls, right? People making a concerted effort to hug one another. Not like people who’ve been in let’s say your pod.

Justine “Justice” Shorter:

But caring, giving distance hugs and sending kisses people’s way. Just I love you, I care for you, making calls to folks who they haven’t spoken to in I don’t know how long. Some folks have gone back to penning letters, or writing kind of more long form emails. But really kind of focusing in on the connection that we have with one another. Even dating wise. Folks are just like, I want to focus more on my personal life too.

Justine “Justice” Shorter:

Again, understanding that people are not machines, we’re just work, work, work, work, work, but also, care about building families, or building relationships and having love and joy in their lives and pleasure in their lives in a multitude of ways. And that has really lit me up inside. Everything from even the end of life celebrations, because there’s been so much loss. But people coming together to show their expression of love, or even those who were not able to survive the, who didn’t have to survive the certain disasters, or even the pandemic.

Justine “Justice” Shorter:

But coming together in that way. And then letting love fuel them and fuel their advocacy. Right? To say that no other family should go through this, or no other child should have to lose a parent this early. And so letting that love be the back force, be the true backing of their advocacy, has really lit me up as well. So I think about love in this conversation too. And love is the thing that really feels me in a lot of ways.

Justine “Justice” Shorter:

And when I am preparing remarks, or to do a workshop, or speaking, I really try my best to let love lead me. What do I think these people, whoever the audience is, really needs to hear? And if I don’t have something that I think is pertinent to say, or I just want to add anything, I just try my best not to say anything. Just like you’re not thinking that’s good. You got it. You don’t really need me on this panel. But I think letting love be my barometer for that, has been really helpful. So 2020 revealed that to me. It really, really helped you to get more centered in love.

Michelle Bishop:

The other thing too, is as we’re having this conversation, I think for folks who are listening, I know there’s a lot of work to do. There’s always a lot of really pressing work to do. The work that we do is so important and it changes people’s lives. And that’s always with me. But as we talk about getting back to normal, or getting back to a better version of normal. Thinking about those things that you realize over the past year, give you joy, or peace, or fuel your fire, or whatever it may be. And think about how you’re going to take those back into the world. And think about how you’re going to take care of yourself as we do that.

Justine “Justice” Shorter:

Absolutely. Self-care, it’s huge. Erika, how are you going to be taking care of yourself when you go Sweden?

Michelle Bishop:

I was going to say this episode is really all about Erika. So I feel like Erika, what do you want to talk about on your way out the door?

Erika Husdon:

I just wanted to talk to you all. That’s what I wanted to have happen. It’s been one of the greatest joys doing this. And I know it’s not a goodbye. It’s 100% just to see you later. So I’m not worried at all, but it has truly been one of the greatest joys to do this. I will never forget the memories that we’ve had doing this. And you know I and my grandmother, will continue to listen to the PandA Pod and all the important work that you all are doing. As I’m in Sweden, probably listening to ABBA like Michelle said. Because even well into 2021, it appears Swedes still listen to ABBA and all the classics right there.

Justine “Justice” Shorter:

Just add Tevin Campbell to them. Just add Tevin Campbell, Can We Talk. Add it to the list. It’s dope.

Michelle Bishop:

Yes.

Justine “Justice” Shorter:

It’s amazing.

Michelle Bishop:

Oh my gosh, it’s a classic.

Justine “Justice” Shorter:

And I’m about to … I’m so about to blast it once we get off this call, because I’m into Tevin Campbell. It’s a whole (beep). It’s a whole live. And so …

Michelle Bishop:

Wow. And the first time we ever had used the bleep button. There it is folks.

Erika Husdon:

Was it right? I don’t know if that was the first time. We always used to cut, last time. But I’m not going to get sad because that will just be endless. But I couldn’t think of a better way to do this with anyone else on the team. And also of course, our incredible communication specialist, Tina, who has done all the work for this. You all-

Justine “Justice” Shorter:

Tina Pinedo.

Erika Husdon:

… Amazing. And maybe next episode, not next episode, because there’s still some things I think that the world needs to work out before then. But then one day we’ll all just record in Sweden and it will be fantastic.

Michelle Bishop:

Yes. Can we get NDRN to pay for a Swedish episode, where we go to Sweden?

Erika Husdon:

It’s probably on the list so.

Justine “Justice” Shorter:

Talk about advocacy.

Michelle Bishop:

All right.

Justine “Justice” Shorter:

Talk about advocacy. I think we should be advocating for those things.

Erika Husdon:

Exactly. I feel like the only last request I have, is for you all to sing us out. Right? Is that an option here? I mean, you already sang, so I feel like that should be the last of it, as we continue everyone’s important advocacy, sing us out.

Justine “Justice” Shorter:

What’s your request?

Michelle Bishop:

I was going to say, a song request.

Erika Husdon:

Honestly, you all do whatever you feel most comfortable with, is what I would say. I don’t want to put you on the spot, which I clearly already did.

Justine “Justice” Shorter:

I’ve been throwing out songs. Michelle what you got?

Michelle Bishop:

I’m still feeling that Boys II Men vibe Justice. Are you ready?

Justine “Justice” Shorter:

Which one? Which song?

Michelle Bishop:

All right. I’m going to take it. You come in when you hear it. Okay?.

Justine “Justice” Shorter:

Okay. Otherwise I’ll just hang.

Michelle Bishop:

It’s going out to Erika.

Erika Husdon:

Thank you. And here are Justice and Michelle singing us out of the PandA Pod.

Michelle Bishop:

All right. This is for you, Erika.

Justine “Justice” Shorter:

And we out.

Erika Husdon:

That was amazing. That was so good.

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Aaron Kaufman currently serves as the Senior Legislative Associate at the Jewish Federations of North America. In this final podcast episode celebrating National Disability Employment Awareness Month (NDEAM), Aaron shares his employment journey, including how the Vocational Rehabilitation (VR) program played a positive role as he worked toward his employment outcome. Aaron offers tips to people with disabilities about everything from navigating the VR system to things to avoid doing during job interviews.

Transcript

Amy Scherer:

Aaron. Thank you so much. Let’s just start, I guess, with what your current job is and what your duties are as part of that job.

Aaron Kaufman:

I’m the senior legislative associate for disability policy at the Jewish Federations of North America. And in that job, I am responsible for all of our disability policy priorities. And so I spend a lot of time on the Hill executing our desires, working on things like protecting Medicaid, protecting the Americans With Disabilities Act, fighting for an extension of the Money Follows the Person program, working on issues related to competitive integrated employment. But then there is another fun side to my job, and that is that I work with our federations, which are sort of like our affiliates. There are 146 federations, and JFNA’s the umbrella organization of all of them. And so I work with our clients on … Working with them on giving and giving advice on how to be more welcoming and inclusive to people with disabilities at their federations and at their beneficiary agencies, whether it’s a JCC or a Jewish family service agency. And I also provide technical assistance to my colleagues within JFNA to make sure that all of our events are truly inclusive for people with disabilities.

Amy Scherer:

Fantastic. That sounds like a job that will keep you busy. Is that a full-time position? I’m assuming?

Aaron Kaufman:

Yes. I would say it’s a six-day a week job. To get everything done right, you have to work some Sundays.

Amy Scherer:

Yes. And then my other question related to that is how many years have you been in that position?

Aaron Kaufman:

It’ll be five years in January. And prior to that I was a lobbyist for the Arc of Maryland, lobbying the Maryland legislature on behalf of the 99,000 Marylanders with developmental disabilities. So I’ve been a lobbyist for seven years.

Amy Scherer:

Fantastic. So from what I know about you Aaron, I believe that you had some involvement with the vocational rehabilitation system as a VR client. And I just wanted to touch on that to see what your experience was like with them, and what type of services that they provided to you. Because a lot of times individuals go into VR to get services, but they don’t necessarily know what their job goal is and what kind of career they want to pursue. And so sometimes there’s a lot of time spent on identifying the job goal. And I was just wondering what your experience was. Did you go into VR knowing what you were looking for, or did you participate in the assessment process to try to figure that out?

Aaron Kaufman:

Well, I started earlier than what I think you’re talking about, because my transition support teacher, which is a position in the Montgomery County public schools brought me to the DORS office, because I live in Maryland and that’s what VR is called, Department of Rehabilitation Services, when I was 16 as part of the transition process. So my DORS counselor participated in my exit meeting and then she helped me get a lot of assistive technology for college, and orientation and mobility training, and got a PT and OT to come out to my colleges and assess and assist me. She also … In Maryland there’s an assistive technology center where you get to try out a bunch of devices. So she made a referral to that center and they helped, I think, bought me a laptop, and a Victor reader and other things.

Aaron Kaufman:

So, by the time that it was time to get a job, my case was closed. But that it was fine because I knew exactly what I wanted to do. But I want to be very clear that I would not have gotten through higher education without my DORS counselor and all the things that she provided for me. They did get a benefit though, financially. Because when I did get my first full-time job, I was on SSI at the time and I assigned my ticket to work to them. And as it was back then, as I understand it, if I stayed in that job for at least 10 months, they got a lot of the money back. So, I was glad to be able to do that for them after all that they had done for me.

Amy Scherer:

I’m really glad to hear that your counselor was involved from the beginning while you were still in high school, through the transition period. Again, that’s how the law is written and that is how the process should occur. But we do often hear that a lot of times VR is reluctant to get involved until the person is actually on their way to college or graduated from high school.

Aaron Kaufman:

I was very fortunate to go to the Montgomery County Public Schools, which is one of the school systems in the country. So some of my colleagues, and now that I’m a disability advocate, tease me saying that I got spoiled by going to public schools in rich Montgomery County, and that’s not the typical experience.

Amy Scherer:

Well, it’s still good to hear that it was positive. And it sounds like you had support throughout the college experience. And then was VR also involved in helping you obtain your first job upon graduation?

Aaron Kaufman:

No, I got that on my own based on my own credentials and networking.

Amy Scherer:

Okay. So was your case closed at that point when you graduated from college, or were they still providing any type of support services once you were working in the community?

Aaron Kaufman:

No, they did not provide any support services at that time.

Amy Scherer:

Are there any other advice that you would give to people in terms of trying to successfully navigate the VR system?

Aaron Kaufman:

Well, I would say the DORS counselors or VR counselors are not created equal. I was a special education teacher for students in a job training program called Project Search. And this will be a podcast, so I’ll be careful, but some of the counselors that my student had … Students had have, rather, were outstanding and just really great to work with. And some of them didn’t have their heart into it and were really pushing paper and didn’t seem committed to their client at all. And you had to nag them to get involved. So what I would say is, if you’re not happy with your counselor, don’t settle for mediocrity. Has to be given another counselor.

Amy Scherer:

A great piece of advice, and definitely something that’s good to remind the people that are listening because people sometimes do forget that is an option to request another counselor. You’re not necessarily just limited to the one that you start with. So I think that’s a great piece of advice.

Amy Scherer:

So I believe you also mentioned that you worked with VR on a professional basis as well. So do you want to talk a little bit about that experience?

Aaron Kaufman:

Yes. I worked in … You’ve probably heard of Project Search. It’s a job training program for people with intellectual and developmental disabilities. And I worked with 12 individuals that had a variety of disabilities, such as intellectual disabilities, Williams Syndrome, down syndrome, autism, et cetera. And each of the people had a DORS counselor because DORS provided a lot of the funding for my students, what we called interns, to participate in the programs. And so we would have a meeting about the intern every three months, and the DORS counselor would go to the meetings and a lot of instances, and in other instances, they would purchase work place equipment for people that needed it. For example, one of my student interns, his job was … He needed hard work boots for the physical labor that he was doing. It was required. And so DORS bought him some work boots, for example. Each of the students had iPod minis and I believe DORS paid for those as well.

Amy Scherer:

Was it weird at all going from the perspective of a VR client to then working with the VR professionals?

Aaron Kaufman:

No, it was a neat transition. And to be honest, maybe they could tell, but I didn’t share with the VR counselors that were working with my students, that I was a DORS client in the past. But I also felt that that situation, having been a DORS client, was actually beneficial for my interns.

Amy Scherer:­­

That is a great thing, and I’m sure it was very helpful to your students.

Aaron Kaufman:

Yes.

Amy Scherer:

More generally, as we wrap this up, as someone who has successfully obtained competitive integrated employment and has been working in a professional position for over five years, do you have any advice to people with disabilities in general, in terms of how to make sure that you are successful on the job and get any accommodations that you might need?

Aaron Kaufman:

Yes. Two things. I did not have a … My first job, I did not really have that great of an experience. Because the job played straight into my weaknesses. So after just a year doing what I was doing, I quit. When people are unhappy, it takes two to tango, but I really thought hard about how I was just getting out of college and I was just so eager to have a job because everyone was asking me, and I took the first job I was offered. And the fact is, it was not a good move because what my employer needed didn’t match my strengths. And so it was a difficult year for both parties, and I didn’t get fired or anything, I just chose to leave. So we, as people with disabilities, Amy, or told when we are little, oh we can do anything. We can do anything, it’s just a little harder. But the fact is we must be honest with ourselves about does this particular job play to my strengths? And if not, it probably isn’t right for me. Particularly with me with my learning disabilities.

Aaron Kaufman:

Because here’s the damage you do. Your self-esteem is shot, and then the employer’s like, “Well, I had such a bad experience with Aaron. I’m not going to hire somebody with a disability again.” And there’s such stigma about hiring people with disabilities generally. So you really have to be honest with yourself about really, “Am I going to be good at this?”

Aaron Kaufman:

The other piece of advice that I would give is to find out from people that already work there whether or not an employer is truly inclusive. Because everybody in 2020 says nice rhetoric about wanting a diverse workforce, including people with disabilities, but they don’t always mean it or put in the work to make you successful, because let’s be frank Amy, because we’re both disabled, it does in many instances take more time to supervise somebody with a disability, or at least an open mind. And you want to see if that’s the culture of the organization. I think a lot of people make mistakes about … Well, they go into an interview. “Well, I have this disability, I have this disability and I need this accommodation and I need that accommodation, and I need this one.” Don’t do that until you’re offered the job, because that scares employers if you go into an interview and say, “I need six accommodations.” Talk about your strengths during an interview, not your needs. And what value you’d bring to the employer.

Amy Scherer:

Excellent points, excellent points. And I think things that hopefully people can take and use in their current situation as they’re meeting with future employers. So I really appreciate your time and your expertise and advice. Hope you have a great afternoon.

Aaron Kaufman:

I hope you do too. And thanks to NDRN. You’re true giants in the disability field.

Amy Scherer:

Thanks a lot.

Aaron Kaufman:

Bye-bye.

Amy Scherer:

Bye.

Curt Decker:

Hello. I’m Curt Decker, Executive Director of NDRN. And thank you for celebrating National Disability Employment Awareness Month with us and our members. We hope you enjoy these podcasts, and we look forward to talking with you more in the future about the important issues impacting the lives of people with disabilities.

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Liz Weintraub shares her unique employment story – her journey from a sheltered workshop to a Senior Advocacy Specialist on the Public Policy team at the Association of University Centers on Disabilities. In this episode, created in honor of National Disability Employment Awareness Month (NDEAM), Liz candidly shares the ups and downs of her journey and emphasizes the importance of good employee/employer communication and the use of plain language documents. Be sure to check out Tuesdays with Liz, a weekly video series hosted by Liz and produced by AUCD that highlights current issues in disability policy.

Transcript

Amy Scherer:

Liz. You’re always, so willing to help us out in any way that we ask you to and I really, really appreciate that.

Liz Weintraub:

Oh thank you.

Amy Scherer:

So, we’re doing this in honor of the National Disability Employment Awareness Month and your journey from going from a shelter workshop to a competitive, integrated employment position and not a lot of people have done that. So you’re a great example that can hopefully be used to help others. But let’s go ahead and start at the beginning.

Liz Weintraub:

Okay.

Amy Scherer:

When you came out of high school, what was the start of your employment journey, at that point?

Liz Weintraub:

Okay. I graduated from a boarding school for people with intellectual disability. It was actually the best school of my life. And you might be saying, “Why?”. Because it was not a inclusive environment, the kind of environment that I fight for every day.

Amy Scherer:

Right.

Liz Weintraub:

But it was a school that I felt like I wasn’t bullied and I could have friends and my friends gave me the respect that I deserved. So after I graduated, they, the school, the headmaster talked to parents about what the next steps. And they recommended to my parents that I go into a private institution.

Amy Scherer:

Was that a surprise to you, given that you had a positive experience at the school and had really enjoyed that? Where you expecting the next step to be potentially a private institution?

Liz Weintraub:

No, and I was very upset because I have thought more about this since I graduated. When I graduated, I probably didn’t think anything of it. I was just told to go there and they went there. But since I became an advocate, I have thought a lot about it. I was very upset, because my friends from that school, some of my friends were in my classes, some of them I lived with, they all went to college. They went to a college program for people with disability.

Amy Scherer:

Right.

Liz Weintraub:

You know I went to this private institution and my parents didn’t think anything about it till I got there. And it was actually kind of interesting because after the second day I called home. I remember calling home and crying and saying to my parents, I don’t like this. And they said, well, we’re working on something as back up. After about a year, maybe two years, my parents begged me to go home. And I actually live where I’m living now and where I’m getting the support that I need for emergencies, that I’m getting right now.

Amy Scherer:

Fantastic. So you pretty much spent about two years, it sounds like in the institution.

Liz Weintraub:

No, Nine years.

Amy Scherer:

Nine years. Oh, nine years. Okay. Nine years in the institution.

Liz Weintraub:

And if you wait a minute, I’ll tell you why.

Amy Scherer:

Okay, sure.

Liz Weintraub:

I stayed there because even though my parents begged me to come home. I really believe that if I listened to my parents, I would never be who I am today. I would never have been able to speak up for myself. I would never have been able to make my own decisions, because I would just do whatever mom and dad wanted me to get. They told me to go to the institution. I went. If they told me to go home, if I listened to them, I would never have learned how to stand up for myself.

Amy Scherer:

That’s a great lesson for all of us to hear. So you basically, came to the decision on your own, outside of what your parents were suggesting that you needed to get in a different situation. Is that correct?

Liz Weintraub:

Yeah.

Amy Scherer:

I believe you have spent some time in the sheltered workshop. Was that while you were in the institution, or did that happen after you came home?

Liz Weintraub:

NO, when I was living in the institution, I worked in two places. I worked in a place where I did kind of workshop. I make worksheets, like math sheets that you would get when you were a kid and I would do office type work. It just was a horrible experience.

Amy Scherer:

Was that in like a warehouse situation or were you in an office? Do you remember anything about the environment that you were in? When you were doing it.

Liz Weintraub:

Office.

Amy Scherer:

Okay. It was in an office. Okay.

Liz Weintraub:

And then I worked, then I graduated from that program, but I will still in the same institution. And I worked in a shoppers guide where you had papers, they used stuff for supermarkets that you get at the supermarket.

Amy Scherer:

Right? Like the coupons or the flyers, that type of thing.

Liz Weintraub:

Yes. And there was a table, probably more of a typical workshop that we know of, where there was probably seven or eight people from the institution and two staff people. It was just an awful experience because it wasn’t in a warehouse. Like Costco or those kinds of stores that you, Sam’s Warehouse, for buying things.

Amy Scherer:

And it was not a job that you particularly enjoyed doing. It sounds like.

Liz Weintraub:

No. No.

Amy Scherer:

So tell me what happened next, after that, in terms of your employment journey.

Liz Weintraub:

Well I got out of the institution. The way I got out of the workshop and got into a real job, because I worked in a library for the rest of the time that I was in the institution. I had a library job outside of the institution.

Amy Scherer:

Very nice.

Liz Weintraub:

That I just adored. It was probably one of the best jobs besides my job today, that I had.

Amy Scherer:

And did the people that were working with you at the institution, did they help you get that library job?

Liz Weintraub:

Yes. Yes.

Amy Scherer:

Okay, great.

Liz Weintraub:

But the way I got out the institution was, I faked seizures.

Amy Scherer:

Wow.

Liz Weintraub:

I faked seizures and I would rock and rock and rock and rock and rock. And I would run away when I got upset. I studied people, when they had seizures. I don’t know, I could notice how they had seizures. And I don’t mean to make fun of people, because I know seizures are really serious things, but that’s only way I knew that I could have people stop and listen to me.

Amy Scherer:

Yeah. Wow. Did that then lead to a change? Where you were able to be in a different circumstance?

Liz Weintraub:

Yeah. I still was living in the institution, because my parents didn’t think anything of, that I should move. And so I went to a conference one day, a national conference, and two of my best friends, so happened, they were talking to some people from Massachusetts. Again Massachusetts was at that time, just starting to work on self advocacy. And they wanted to hire as someone to help them with self advocacy. Two of my friends said, two people from Massachusetts saw me at this conference and offered me a job. My main job was to work on quality assurance.

Amy Scherer:

Fantastic.

Liz Weintraub:

They had a survey that they give to people, to provide this to interview people. And then they did some trainings. And one of the other interesting part of that story is, and I learned this very important lesson. I kept saying to people at my interview, or before I got the job, I want to be treated just like everyone else. The only issue, and the training department was at the institution. I said to my friend, I said, “Why am I in the institution, why am I in the institution? I don’t want to be in the institution. I live in the institution, I got out the institution.”. And he said, “You want to be treated just like everyone else. So you’re going to be treated like everyone else.”. And that’s where the train department was. I wanted to do more traveling and more seeing the world. And I also wanted to live closer her to mom and dad. I left that job. I went back to the conference where I found my job in Massachusets.

Amy Scherer:

Right.

Liz Weintraub:

And somebody recommended a job called the counseling quality and leadership. And I stayed there for 16 years where I did survey work. And I also did some training work and it was just a great job.

Amy Scherer:

Great. And so that sounds like that built directly on what you had already been doing with the survey work and the quality assurance. Where was this job located that you got, that you stayed at for 16 years?

Liz Weintraub:

The headquarters was in Baltimore.

Amy Scherer:

Okay.

Liz Weintraub:

But people were all over the country. They wanted me to move from Massachusetts to Baltimore. And then I said, I wanted to live closer to mom and dad. But once I met my, at that time, my boyfriend now, my husband and he was living in the Rockford area where we live today.

Amy Scherer:

Right.

Liz Weintraub:

So I begged and begged and begged my supervisor, if I could work from home, just like everyone else. And I would travel when I needed to, and they agreed to. And then I got bored about doing that. So.

Amy Scherer:

Well 16 years is a long time.

Liz Weintraub:

Yes.

Amy Scherer:

So you didn’t get bored too quickly, but then you just got to a point where you were ready to move on to the next step.

Liz Weintraub:

Yeah. And then I found my job at AUCD.

Amy Scherer:

That is great. So tell us a little bit about how you found your job at AUCD.

Liz Weintraub:

AUCD was doing a project, the self advocacy summit and AUCD knew that they could not, it was actually a project that ACL was doing when the there [inaudible 00:16:04], and AUCD knew that they could not do that work without a self advocate. So they hired me.

Amy Scherer:

That is fantastic. And so what were your job responsibilities when they hired you? What did you have to do each day?

Liz Weintraub:

I was doing part-time work, so I was working for CQL and AUCD, but what I was doing was I help them set up webinars. I went to all the summits. After all the summits were over, I wrote their reports. I help them write a plain language report. After that was all done, I had a vision of doing a video show.

Amy Scherer:

Well, and let’s talk a little bit about Tuesdays with Liz.

Liz Weintraub:

Tuesdays with Liz has been around for four years. It’s a YouTube show where I make policy in accessible and fun ways, for people to understand. And my idea was, has always been, and it began with my idea. Maybe it was a selfish idea, but I think everything begins with you in some ways. When I was little I sat at the table, the dining room with all my family and I never understood what a policy was. I never understood how community based services was. I never a never understood what this was. I never understood what that was. So I wanted to make sure, and when I had that opportunity right after the summit, to develop YouTube show that that people could understand what a policy was. So they could go up to the Hill, whether it was here in Annapolis in Maryland, or in DC, to talk about, okay, I know what the Able Act is. I know what a transformative, competitive employment act is. And I know. Yeah.

Amy Scherer:

So it sounds like your goal is still today, that you want to make policy accessible and understandable to everybody. So that it’s clear what policies exist today and what type of advocacy needs to be done. Is that what your goal is?

Liz Weintraub:

Yes. And we have even done that with our newsletter club, called the Disability Policy News. There’s a piece of it that I edit every week for plain language. And some of the words, can’t be changed, because it’s part of the law, right.

Amy Scherer:

Right.

Liz Weintraub:

Part of the words are the way it is, but [inaudible 00:19:55] that’s where we have a plain language that we can talk about it.

Amy Scherer:

And can you say why plain language is so important for people who may not know about plain language or why we strive to make things in plain language? Why is that important to you and to others?

Liz Weintraub:

Great question. Thank you. I think plain language is important because it helps people bond to the conversation. It’s help people to understand that they can contribute. And if there’s no plain language and there’s so many times that I’ve gone to a meeting and people talk in big words, I don’t mean 17 letters. I mean, big words that I don’t understand.

Amy Scherer:

Right.

Liz Weintraub:

Some of them there are 17 letters, but sometimes they’re just big words. And if I can’t understand it, I feel like I want to cry because I’m not part of the conversation and I can’t be part of the conversation, and I want to be part of the conversation.

Amy Scherer:

That’s a very important point. And if people want to find Tuesdays with Liz, can they search on YouTube or how would they find your show,

Liz Weintraub:

You can go to AUCD.org.

Amy Scherer:

Okay.

Liz Weintraub:

Or you can and Google On Tuesdays with Liz.

Amy Scherer:

Fantastic. And do you actually have input into the people that you’re going to interview? Do you have to come up with the questions?

Liz Weintraub:

Yes. Yes. How we do it is that there’s a team of us. The director of public policy, the producer and myself, and that was why we need to wait for the producer. But as I said, we’re still doing past episodes. Mostly I’m voting because voting is important in these days.

Amy Scherer:

Absolutely.

Liz Weintraub:

We come up with who we think would be good people to interview. Whether it’s a topic that is in the news, whether it’s a topic that AUCD is working on or whether it’s just a topic that I think that people might be interested in.

Amy Scherer:

That sounds fantastic. And is that the main part of your job now at AUCD, as well as helping to make sure the documents are in plain language, like we talked about? Is that and the podcast, your two main responsibilities at this point?

Liz Weintraub:

Yes. And I should have say the questions are all probably 90 percent my ideas.

Amy Scherer:

Right.

Liz Weintraub:

Because it’s what I’m interested in. And sometime my supervisor, the director of public policy, Ryeland Rogers, will suggest things.

Amy Scherer:

Great. Great. Do you have any particular commendations for your disability when you’re working AUCD? Do they set things up in a different way, or is there anything that makes it easier for you to be able to do your job well, that you can share?

Liz Weintraub:

Well, I think we have tried voice recognition for me to learn how to type faster, because I type, I know that my mother would be rolling in her grave, but I still type like a ham pack typist.

Amy Scherer:

Right.

Liz Weintraub:

It is just hard for me to use two hands.

Amy Scherer:

Right.

Liz Weintraub:

It’s really important that I feel very supported in my job. And I’ll give you an example.

Amy Scherer:

Sure.

Liz Weintraub:

And this is so wonderful. AUCD has changed our emails, so roads, I don’t understand what it’s called, but anyway, and I got frustrated. I didn’t know how to work things.

Amy Scherer:

Right.

Liz Weintraub:

I didn’t know what it looked like. And I got scared and the web person at work, walked me through it, and it was just wonderful. And now I’m happy and I can do things myself. And yes, it’s nice to know that I have that my back up with Phil, my husband.

Amy Scherer:

And the other thing that seems to run through your story, as you have recounted it to us today is that you’ve had good communication with your supervisors.

Liz Weintraub:

Even people above your supervisor, if there’s a problem with your supervisor, and this has never happened to me. But if I ever had a problem with my supervisor, often people have said to all of us, you know you can talk to the ED of AUCD because I could have a problem with my supervisor. I think it’s also important that people with disability need to be accountable for their job and what they say they do. And if we mess up, okay, we mess up. But we can’t say, Oh yeah, you’re a person with a disability, we will overlook that.

Amy Scherer:

That is a very important point. Very important.

Liz Weintraub:

Treat me just like everyone else. Like me going into the institution. Did I like going into the institution? No, but that’s where the training department was. And that’s how being treated just like everyone else. And then the other thing I’ll say is about giving me real work to do and not busy work, I’m doing at AUCD. I’m doing real work. I’m contributing. I think I [inaudible 00:28:04] but I will say it, two words, nothing about us, without us. And that means if there’s something involving me or my friends, I should be at that table, not me personally. Well, maybe me personally.

Amy Scherer:

That’d be fine too.

Liz Weintraub:

There are people and then, all means all. We all need to be included.

Amy Scherer:

That is the perfect way to end this conversation. I really enjoyed spending the time with you today, Liz, and I’m so glad that we’re able to share your story as widely as possible.

Liz Weintraub:

Okay. Thank you. Be safe and happy. Happy employment month. Okay, bye.

Curt Decker:

Thank you for celebrating National Disability Employment Awareness Month with us. We hope you continue tuning in all month. As we talk more about the importance of employment and the dignity of work.

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In this special edition of the PandA Pod, we explore what to expect during the 2020 General Election process given the current public health crisis. Learn from NDRN’s voting rights experts about the rights of voters with disabilities, resources available to ensure the rights of voters are protected, and why every vote matters every election.

If you feel your rights as a voter with a disability have been violated, contact your state or territory P&A.

Transcript

Erika Hudson:

Awesome. We are back with the PandA Pod. Michelle, who is excited?

Michelle Bishop:

Whoop, whoop. You know I’m excited. PandA Pod is like my favorite thing.

Erika Hudson:

Heck yeah, we are back after I think seven months of not recording. I’m so excited to be here today for a special edition to talk about the 2020 elections and voters with disabilities. This is Erika Hudson, Public Policy Analyst with NDRN, and I’m joined by two absolutely incredible people who I will let introduce themselves. Michelle, hello.

Michelle Bishop:

Okay. First of all, I don’t know if I’d call us “back.” Like who’s in a closet right now recording this podcast because we’re still working from home? I know at least I am. This is Michelle Bishop, I am the Voter Access and Engagement Manager at NDRN. Hey y’all. Oh. As well as a proud cohost of the PandA Pod I should add. And we have a new guest with us on today. We are so excited to introduce the world to Jack Rosen. Jack, let the people know who you are.

Jack Rosen:

Hi, I’m Jack Rosen. I’m NDRN’s voter engagement specialist. I came on in May to help expand our GOTV efforts. And I am coming to you here from a carpeted room where I have all my devices off so they don’t go off during this.

Erika Hudson:

You are prepared. Oh my goodness. And Michelle, yes, I’m also currently sitting in the closet recording this, which is very exciting, and I’m pretty stoked to be here with both of you. Of course, we very much miss our fellow podcast host, Justice, who is incredibly busy with everything going on in the world, but I know she sends her best and we hope to have her as a fellow cohost very soon again, as we will continue this amazing podcast, which makes all my dreams come true in terms of being a podcast host.

Erika Hudson:

Before we get started, I just wanted to ask Michelle, would you have thought this is where we would be seven months ago when we recorded I think our first PandA Pod episode?

Michelle Bishop:

No. First of all, I’m sure everyone misses the joy of you, me, and Justice recording the PandA Pod in the office. So that’s literally two-thirds of the staff of NDRN could hear us laughing. I’m sure everyone misses that. And I miss bringing you guys Oreos to kick things off, but no.

Erika Hudson:

Me too.

Michelle Bishop:

It wasn’t that long before everything kicked off with COVID from us starting the PandA Pod to us being stuck at home without each other for months. This is the worst.

Erika Hudson:

I mean, honestly. And Jack, did you listen to that episode? Right? It was so weird. We were talking about voting and disaster planning. And now here we are sitting in our closets during a global pandemic with the 2020 general election quickly approaching.

Jack Rosen:

Yeah, definitely goes to show why disaster planning is important.

Michelle Bishop:

Guys. Jack started at NDRN during the pandemic.

Erika Hudson:

That’s a fun time to start a new job, for sure.

Michelle Bishop:

Jack started working from home and he has missed all the joy of us recording the PandA Pod in the office.

Erika Hudson:

That is incredibly sad.

Jack Rosen:

Yeah. I didn’t know I was supposed to get Oreos for doing this. No one told me. I’m going to hold you to that, Michelle.

Michelle Bishop:

I’m going to send you Oreos. They’re coming. I can get those on Postmates. Right? I feel like I can make that happen. I also assume that during the pandemic, Erika has watched all of Grey’s Anatomy.

Erika Hudson:

Mm-hmm (affirmative). You know it. Hello. That, and as I keep telling everyone on staff, I’ve been watching ER. That started back in the ’90s, I believe, so pretty exciting.

Erika Hudson:

I mean George Clooney there and everyone and everyone is fantastic. So that’s what I’ve been doing with my chilling at home for a while, to say the least, but grateful to be working with you all and still being able to have these important conversations throughout with everything else going on in the world.

Michelle Bishop:

Yeah, yeah, yeah. That’s nice. Please tell me you made a plan [inaudible 00:04:34] voted. This is all I need to know.

Erika Hudson:

I appreciate that. Well, I’m super excited. I actually just voted today and instead of saying, “Hey, so glad you voted, Erika.” Michelle decided to tell me and call me out that my “I voted” sticker was upside down in the photo that I sent her. So that is where we are at in our relationship clearly.

Michelle Bishop:

I just feel like if you don’t want to be teased, don’t send me a picture of you holding an “I voted” sticker upside down.

Erika Hudson:

Okay. That is fair. But I was super excited. My vote plan was to submit my ballot or to get my ballot in the mail. And then I went to my local library and dropped it off in the ballot box. So I was super excited to do that today. And I couldn’t think of any better day to do that than the day we record our PandA Pod special edition talks about voting.

Michelle Bishop:

Okay, I also dropbox voted, and Fairfax County did not give me a sticker with my ballot. I know. I’m still upset about it. Any election’s official will tell you, the number one complaint of voters is if they don’t get a sticker, and I’m just going to say I’m part of the problem. I’m very upset when I don’t get my sticker.

Erika Hudson:

Obviously. Yes.

Jack Rosen:

You need the sticker.

Michelle Bishop:

Jack, have you voted yet in DC?

Jack Rosen:

I have not voted yet, but that’s because I am planning to vote on this Saturday, October 24th using a dropbox to celebrate Vote Early Day.

Michelle Bishop:

Yes. Go Vote Early Day. That’s a brand new day this year. That’s so exciting. Well, not October 24th. That exists every year, Vote Early Day is a brand new day.

Erika Hudson:

That’s like a joke I would make, Michelle. That’s amazing. I love it. That’s fantastic.

Michelle Bishop:

It only took about a year at the PandA Pod, but here you are rubbing off on me with your humor.

Erika Hudson:

I mean, you’re welcome is all I can say. Well wait, so Jack, tell us more. What is this day? The Vote Early Day. Probably when this podcast comes out, the day we’ll have past, but what was that day?

Jack Rosen:

So Vote Early Day is a new initiative this year, and they chose October 24th because by then early voting will have started in most states. It’s an initiative we’re involved with and proud to be supporting. And it’s just a movement to get people to cast their ballots early so that you can avoid the potentially the long lines on election day or just get your ballot in early in case you have a busy schedule during the following week. Don’t take any chances, get your ballot in ahead of time.

Michelle Bishop:

Yes. I love it. Voting early is where it’s at. Election Day is going to be a beast this year y’all.

Erika Hudson:

Oh my lanta, yes. And I would love to hear you Michelle and Jack, fill us in a little about what to expect in these next couple weeks. Just like you said, Michelle, it’s going to be a beast for various reasons. Just like touch base on that. Let us know. Because I don’t know a lot, admittedly. So what’s going on?

Michelle Bishop:

Well, anywhere where there’s early voting, we’re already seeing really long lines. Last I heard over 30 million people have already voted, and it could quite frankly be a lot more than that by now because I’m pretty sure I heard that number yesterday. So if you’re planning on voting early, there’s already been some long lines. You really want to plan ahead, pick your location carefully, and pick your timing carefully.

Michelle Bishop:

Because people are already waiting sometimes two, three hours in line to vote. At least around me. I’ve heard people waiting three hours or so to be able to vote. If you kind of plan ahead or you still have some time to get a vote by mail ballot, that you can drop in a dropbox. That’ll save you a lot of time. I’m also a dropbox voter. So I saw the people who are waiting in line for three hours, but I voted in 10 minutes and I have no regrets about that. So that’s one of the big things we’re seeing so far.

Michelle Bishop:

And there’s a lot of people who are still committed to voting on Election Day on November 3rd. So there’s a chance those lines are going to be really long, especially with COVID-19. We really have to social distance those voters. So if you imagine what some of those lines can look like in a regular election year, and then you take all those voters and put six feet in between them, you could be standing potentially a few blocks away from your polling place. We saw that during some of the primaries. So I think it’s going to be a little bit chaotic. It really pays off to make a plan to vote this year.

Jack Rosen:

Yeah. And when you’re making a plan, if you’re going to vote in person, you’re expecting long lines, also consider if there is anything you need to bring besides your mask and some hand sanitizer. Maybe you want to bring a snack or any important medications if you’re going to be standing in line for three hours, or even just a little book to help you pass the time.

Michelle Bishop:

Absolutely. I saw people with camping chairs, which I thought was the smartest thing I’ve ever seen.  You can sit in line instead of stand. And I wanted to be like, teach me all you know about life person who thought to bring a camping chair with them when they went to vote. But yeah, people like watch movies on iPads, reading books. That’s smart. I always say you should bring a snack, maybe some Oreos,

Erika Hudson:

I was going to say, Oreos Double Stuff right there. That’s great. And this is super helpful. Michelle, you mentioned you voted by dropbox. I know I did. But one of the things that I’ve been hearing a lot about is what’s the difference between mail-in ballots with dropboxes and absentee ballots, right? There’s like a lot going on and I think… I mean, I know I’m still confused, right? Is there a difference between absentee and mail-in ballot?

Michelle Bishop:

There can be, and it’s so confusing because it really depends on your state. Some states use the words mail-in voting and absentee voting interchangeably. And in some states, there’s actually two different types of ballots. Like you could get an absentee ballot or a mail-in ballot, and they may not be the same. Some of the things that could be different about them in some states, if you have to have an excuse to vote in absentee and disability’s usually an excuse, a mail-in ballot may not require an excuse. So that can be real handy, especially if COVID-19 isn’t a reason where you are, and that’s why you want to vote absentee. But the important thing to know is they might have different deadlines or different options for how you can return them. In some states, whether or not you have an absentee or a mail-in ballot determines whether or not you can take it to your polling place or a dropbox, or if you have to put it in the postal mail for it to be delivered.

Michelle Bishop:

And you want to make sure you know those deadlines. If you have to mail it, does it have to be received by Election Day or postmarked by Election Day. All of that varies by state. So you really want to do your research and know what kind of ballot you’re applying for and what’s going to work for you.

Erika Hudson:

Yes. Why are things different state by state? Right? Like I know I have family in Indiana. They vote differently than what I’m doing here in Virginia. Can you explain like, why is it different and why it’s not just like the same thing for everyone who’s voting in the 2020 general election?

Michelle Bishop:

Well, almost all election laws are state laws. There’s very few federal laws about how we actually run our elections. So every state does their absentee voting traditionally a little bit differently. Some of them, you have to give a reason why you’re going to vote absentee. Maybe you have a disability or you’re going to be out of town or you’re like me and you work from before polls open until after they close on Election Day. But some states don’t require that.

Michelle Bishop:

So some of the states that require an excuse to vote absentee, had COVID-19 is a reason. Some of them created a separate mail-in ballots that you don’t have to have a reason for. It’s something quicker for them to do sometimes without a change in law to change how they regulate their absentee ballots. So it’s just kind of a confusing patchwork of state laws that determine what it looks like where you are. And to be honest, part of me sometimes wonders if some of these things are intentionally confusing because these laws can be really complicated. So you really just want to make sure you read up or you call your elections office, you know what your options are, and you know what you’re going to get.

Michelle Bishop:

I was just talking to Disability Rights Pennsylvania a couple days ago. And they were saying that they just got electronic absentee voting where you can have your ballot sent to you electronically if the paper’s not accessible to you, but it wasn’t ready to launch on time. So what it sounds like some counties in Pennsylvania are going to have it and some aren’t. So literally whether or not you can get your ballot electronically to vote by mail is determined not even by what state you’re in but by what county you’re in, in a place like Pennsylvania.

Michelle Bishop:

So you really want to make sure you’re going right to the source and talk to the elections officials in your county or your jurisdiction, so you know what your options are and what the rules are.

Erika Hudson:

Hot nugget. That’s a lot. Oh my gosh. Well.

Michelle Bishop:

When Erika says “hot nugget.”

Erika Hudson:

That’s the new word. Oh my gosh.

Michelle Bishop:

Hot nugget

Erika Hudson:

Yes. That’s a big phrase right there. I was going to ask Jack, are there any resources for people to find this information for their specific state? Like can I find something specific for Virginia?

Jack Rosen:

There are a few tools available to you. One of them and a very useful one is vote411.org. That’s a tool by the League of Women Voters Education Fund. And you can find out where your early voting and I believe ballot dropbox locations are, as well as your in-person polling place. In addition, if you have questions about your accessible voting options in your state, a great resource to turn to is the P&A network itself. Give your state’s P&A a call, they have a person who works full time or at least works on voting and elections accessibility issues. And they should be more familiar with your options in your state.

Erika Hudson:

Snaps to accessibility, right there. Goodness.

Michelle Bishop:

Co-sign on all of that. Cosign, definitely contact the P&A.

Erika Hudson:

Right. And Michelle, what do folks need to keep in mind in terms of access here during the 2020 general election? Are there protections in place for voters with disabilities? Like I know as someone who’s visually impaired myself, I really need the voting machine specifically to cast my ballot. Is that still going to be in place even with COVID and everything going on?

Michelle Bishop:

It better be so-

Erika Hudson:

Yes. Okay. Yes.

Michelle Bishop:

Right. Here’s the deal with that. Yeah. COVID is making how we run elections this year much harder, much more complicated. I really don’t envy our elections officials, but like I said, there are a few federal laws that apply to voting and a lot of our rights and protections as disabled voters come from those federal laws. So no matter what we’re going through with the pandemic, the Americans with Disabilities Act still applies. It says your polling place has to be accessible to you.

Michelle Bishop:

No matter what we’re going through with the pandemic, the Help America Vote Act still applies. And it says that you have the right to have private and an independent vote, and that that accessible equipment needs to be there for you to vote on. The Voting Accessibility for the Elderly and the Handicapped Act still applies. And it says you have the right to request to move up in line, and that you have the right to an alternate means to access your ballot if you’re polling place is inaccessible, like accessible absentee voting. The Voting Rights Act of 1965 still applies. And it says that you have the right to the assistant of your choice. I mean, with the exception of your union rep or your employer, but you have the right to have anyone else you want assist you to cast your ballot.

Michelle Bishop:

All those rights still apply. COVID-19 or no COVID-19. So voting should still be accessible to you. And it really pays to know what your rights are to make sure they’re being enforced. Or like Jack was talking about, who you’re going to contact. I almost said, “Who are you going to call?” Because I’m an ’80s baby. Who are you going to contact if those rights aren’t being respected and if you’re having difficulty casting your ballot? So no matter what we’re going through with COVID, and it’s really taking its toll. We’re hearing in a lot of places, there will be fewer polling places because polling places are voluntary. And some of them just can’t serve as polling sites this year. We’re hearing about fewer poll workers, because that’s also a voluntary position and poll workers who are high risk for COVID-19 complications can’t necessarily serve this year. So it’s difficult. It’s taxing.

Michelle Bishop:

That said we’re also hearing some good things. I was just talking to our coworker, Amy at NDRN, and she was saying she had a different polling place when she went to vote early this year because of the pandemic. And it was actually easier for her to get to and more accessible than her old polling place. So it’s not all doom and gloom. You just want to make sure you know how you’re going to vote and how you’re going to access that. If you’re going to the polls, how are you going to get there? Has the location changed? Is it accessible to you? What type of equipment should be set up when you get there? You just want to know that in advance and be ready to vote, but yeah. Your rights, your civil rights under federal law, they still apply whether or not there’s a pandemic.

Erika Hudson:

Yes. Clap to that. Thank you, Michelle. And I think exactly what you said. All of our rights still apply even given our current health crisis. And question, who you going to call? Is that Ghostbusters? Is that what that is? Or…

Michelle Bishop:

That’s always Ghostbusters. Wait. I’m sorry. Are you asking because you may not have seen Ghostbusters?

Jack Rosen:

Yeah. Wait.

Erika Hudson:

I saw Casper the Ghost. That was a good one. I remember that as a kid.

Michelle Bishop:

Not in any way the same thing. You’ve never seen Ghostbusters?

Jack Rosen:

Not even the-

Erika Hudson:

I do think so… No, I think I saw the new one though, with Melissa McCarthy, right? Or am I making that up?

Michelle Bishop:

Guys, this broadcast is over. I’m sorry.

Jack Rosen:

I don’t know if I could continue due to creative differences here.

Erika Hudson:

Oh, this is awkward. Side note, love Melissa McCarthy. She’s amazing. Okay. Well, I guess I need to get on that.

Michelle Bishop:

If you are new to the PandA Pod, you need to know that Erika grew up in Sweden. So she maybe missed out on some American cultural phenomenon. It is a running gag on the show, and now we’ve just discovered it.

Erika Hudson:

Well, I feel like I did know. I did ask, was it Ghostbusters? And I take that as a yes. So I somewhat know what’s going on. I’m with the cool kids. That’s me, I guess. That went down a path that we don’t need to address.

Erika Hudson:

Continue moving on, but really appreciate what you all had to add there. And especially emphasis, like if we do have any problems, right? When we go to the polls and we vote, we call the protection and advocacy network, right? And where can we find all that information by chance?

Jack Rosen:

You can find it on the NDRN website. Go to ndrn.org/voting. There’ll be an option on that page to find your local P&A. In addition, I just want to plug one other helpful resource though. If for some reason you get to the polling place and an elections official is telling you, “Oh, we don’t have the accessible equipment,” or for some other reason is not letting you vote even though you know you’re a registered voter. It’s also important to call the election protection hotline, which is done by the Lawyers’ Committee for Civil Rights. And you can reach them at 866-OUR-VOTE. You can call or text. They also have a chat function on their website: 866ourvote.org. There’s also protection hotlines offered in Spanish, Arabic, as well as several Asian languages, including Cantonese, Urdu, as well as others. So those are all worth checking out. Oh, as well as the ASL voter hotline to assist those who use ASL as their primary method of communication.

Michelle Bishop:

Yes. From our friends at National Association of the Deaf, and to all this Jack, I say, hot nuggets.

Erika Hudson:

Yes. I love that I have an influence here with different expressions that are being used. Love it, hot nugget, clap. Like all the way.

Michelle Bishop:

And exciting about election protection, they’ve added some options that are not phone based. If for any reason calling on the phone just isn’t your jam. Maybe you’re that person like me who will pay extra money to use an app because you’re terrified of calling to order takeout, but it might also be people who are deaf and hard of hearing, people who have anxiety, autistic people, someone with a speech impairment, whatever your reason may be, election protection has added a chat feature through their website as well as a texting feature. So if you check out their website, 866ourvote.org, they have those options there for you as well.

Erika Hudson:

So important. Thanks so much to both of you for flagging that. Oh wow. This has been super helpful. I know we all talk a lot and given everything that’s happening in the world, I really appreciate having a positive conversation about the 2020 elections. There’s so much surrounding it. And I know a lot of people talk about it every day and it’s kind of hard almost to escape the conversation for various reasons. But I do want to ask you two as experts. What if someone said to you here in the next couple of days or weeks leading up to November 3rd, “Well, my vote doesn’t matter, so I’m not going to vote.” If you could say anything all, what’d that be? I’m curious.

Jack Rosen:

I would say that there are so many races up this year, beyond just the presidential race. There are senators and governors and members of Congress on the ballot. There are members of state legislatures all the way down to town board members. And I can promise you that many of those races, the people elected will have very, very real impact on your day to day life, especially some of the races more at the local level. There’s also a number of ballot propositions up this year that will have a real impact on people. So there’s a million reasons to vote, but you got to find the race that really excites you to turn out.

Michelle Bishop:

I think that’s true. And I’d add to that. You know, if you turn on the news or hop online and check out what’s going on around voting rights and all the arguments about things like voter fraud and voter suppression and all the things that are being done to try to determine who gets to vote. There are people out there who are working actively right now on closing down polling places, coming up with really strict laws for the type of ID you need. A lot of time and money goes into trying to stop you from voting. If your vote didn’t matter, if your vote didn’t make a difference, why would all these people waste all their time and money on trying to stop you from voting? Because the truth is not that your vote doesn’t have any power. It’s that your vote is more powerful than you can even imagine. Why would you let anyone stop you from using it? There’s just no reason to give up now and let anyone stop you from using the powerful voice that you have.

Erika Hudson:

Hot nugget. Oh my lanta. I really don’t know what to say after hearing that from both of you. Thank you. Wow. Yep. That’s it. I mean, I couldn’t have said it nor will I say it any better than the two of you just did. So to summarize there’s so much going on and there’s so much at stake. So thank you both for everything that you do to get out the vote and everything else that you do every day. Amazing people. Anything else you all want to say here before we hit November 3rd and before, hopefully we come back in a few weeks and do a recap of the 2020 general election? Anything else that I forgot to ask you all today that would probably be helpful to our listeners?

Jack Rosen:

Just if you want to vote early, there’s no better day than today. Get your ballot in as early as you can so that you can avoid the long lines or any confusion on Election Day.

Michelle Bishop:

All right. I don’t know if this is helpful for our listeners, but I want to say to our absent cohost Justice Shorter, I know you had to miss out on the broadcast today, but girl, you better vote. Don’t let me find out you didn’t vote. I’m watching for you.

Erika Hudson:

Great. I say that too, oh my goodness. Yeah. So in summary of today’s podcast, Oreos are delicious. Hot nugget is the new phrase, and make sure you have a vote plan and go out and vote in the 2020 general election. Every vote counts. And it’s so important. And if you have any questions or if you have any concerns, be sure to check out NDRN’s website, ndrn.org and find your state’s or local protection and advocacy agency to ensure that your right as a voter is being protected.

Erika Hudson:

And with that, we want to say thank you to everyone who helped make this podcast happen. Michelle and Jack, thank you for all that you do every single day to get out the vote and protect everyone’s right to vote. Thanks to Tina, our fearless leader, for helping us pull this together in such a short timeline before the general election happens on November 3rd. And with that, thanks so much and remember to stay cool. That’s what people say now. No. Who you gonna call? Ghostbusters, that’s going to be our tagline out. That was awkward. Excellent. Bye guys.

Michelle Bishop:

Thanks y’all. Have a good day. Remember to vote November 3rd!

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Mark Schultz, the current Commissioner of the Rehabilitation Services Administration (RSA) and the Assistant Secretary for the Office of Special Education and Rehabilitative Services (OSERS), discusses the tremendous potential of people with disabilities to successfully obtain jobs in the community. Commissioner Schultz stresses the importance of high expectations – that all people with disabilities can and should work and be able to pursue their dreams. He identifies some of the key issues that should be considered and programs/initiatives that may be helpful throughout an individual’s employment journey, even in the time of the COVID-19 pandemic.

Transcript

Ron Hager:

This is Ron Hagar with the National Disability Rights Network. And with me is Mark Schultz, who’s the assistant secretary of the Office of Special Education and Rehabilitation Services, or OSERS. He’s also the commissioner of the Rehabilitation Services Administration, RSA. Where are you? Are you in Washington?

Mark Schultz:

No, I’m actually in Nebraska.

Ron Hager:

You’re in Nebraska and I’m in Buffalo, New York.

Mark Schultz:

Yeah. It’s amazing how much we’ve been able to accomplish through this.

Ron Hager:

Yeah, yeah. So Mark, such a pleasure to have you with us this afternoon. Thank you so much for taking time out of your busy schedule to join us today as we do this podcast to celebrate the National Disability Employment Education [Awareness] Month, NDEAM, which is, I heard today from OSERS actually, that it’s the 75th anniversary.

Mark Schultz:

Yes, it is. It’s the 75th anniversary. We’re celebrating, as well as it’s the 100th anniversary this year, the VR program…

Ron Hager:

Oh, all right. That’s right. Well, we go back quite a ways, as I found out, back to when you were heading up the Assisted Technology Program in the State of Nebraska.

Mark Schultz:

Yep, many years ago, right? More than-

Ron Hager:

Yeah, more than we want to count, right? The reason I ask that question is I just wanted to ask you, since you’ve been in the field of disability work for so long, what was it that got you started?

Mark Schultz:

Well, I actually started out, I needed a job. So, looking through the paper, there was an ad for a very free design specialist at a Center For Independent Living in Nebraska. And I graduated from architecture and had a degree and I wanted to put it to use. So, I started working for the Center For Independent Living. I just caught the passion for the work that I was doing at that point. And then, had a family member that had some physical, mental health issues that, as that progressed, I was able to see her struggling with keeping a job, and started to look at what I might be able to do to help others in their search for employment and in success.

Mark Schultz:

So, that led me to a mission of wanting to improve employment services for people with disabilities. And as I progressed through my career, at the level I was working, whether it would have been with assisted technology or vocational rehabilitation eventually as the director, and then moving up, I saw issues that I wanted to work on that I couldn’t make a difference at that level. And so, I’ve just had the opportunity, fortunately, to be progressing in my career path and being at a level where I could hopefully influence some changes that would make a difference for people with disabilities.

Ron Hager:

Well, thank you, Mark. We certainly appreciate having you in the position you’re in. We really enjoy your message and your passion. Could you describe a little bit for us what your roles are right now, the two hats that you basically wear and how they work together?

Mark Schultz:

Sure. Well, I started out being confirmed as the Commissioner of Rehabilitation Services Administration after waiting 500 days from my nomination to confirmation. And then, after two months in that role, I was asked to serve as acting assistant secretary at that time for the Office of Special Education and Rehabilitative Services or OSERS. So, that was an opportunity and a real honor for me to take on that role. And within both those roles, I helped to set the vision and the priorities for OSERS, and then set those in alignment with the Secretary of Education, secretary to boss, and those priorities occur for both our formula state grants and our discretionary grant investments. So, that’s the primary role. But, being able to serve in that dual role capacity really gives me the opportunity to promote collaboration between RSA and OSEP. So, that really focused in terms of our activities around education and employment, in terms of the collaboration and the alignment of those activities. So, I see it as a real opportunity.

Ron Hager:

Yeah. I think it is interesting because you do have both hats, you’re over both the special education system under Office of Special Education Programs and the RSA, the VR side.

Ron Hager:

So, you talked about your passion for this work because of your desire to see people with disabilities succeed. Could you go into a little bit more about how important it is for you for people with disabilities to be employed, to be competitively employed?

Mark Schultz:

Yep. I think it all emanates from my experience with the Center For Independent Living, where I was able to, I guess, get baptized to be of Independent Living and recognize how important it is for all of us really to have a job that affords us the opportunity to be economically self-sufficient, to pursue our goals, our dreams, and our ambitions.

Mark Schultz:

For example, many of us, when someone asks us who are we or what do we do, it’s always around our work, our response, and what we do. So, a lot of our self-worth and self-esteem is often based in… So, it’s real critical that we have the opportunity to be able to succeed. And for people with disabilities, it’s particularly important, I think, that expectations be raised for everyone so that we’re not satisfied, and people shouldn’t expect to be in subminimal wage jobs, in non-integrated environments. And that’s the importance of competitive integrated environment. It creates an expectation that everyone can and should work, and that we should be looking to maximize the potential of every individual, based on their disability and their unique needs so that they can really be as successful as possible.

Ron Hager:

Thank you for that. Definitely, we share that mission, which is wonderful. The whole point of all this is preparing people with disabilities for success. And I really liked the way you went for the childhood, because a lot of families say, “Oh, my child’s disabled. Our life is ruined. It’s over. What are we going to do?” To have that expectation that your child with a disability is no different in terms of expectations for any other child. It may be different, but the expectations should be the same. So, I appreciated that message, yeah.

Mark Schultz:

Yeah, thank you. Laurie and I have had those discussions and that was something I recognized when I was a director of VR in Nebraska. And then, when I went to deputy commissioner, I was able to actually start to influence that to some degree because I had special education under me and early childhood. So, I think that is important too. Without those expectations, people only live up to the expectations those have around them. So, the parents are so critical in this process.

Ron Hager:

Right. Right. With the role of VR, as you’re looking at preparing people to be successful, to be employed competitively in integrated settings, what do you see the role of the Vocational Rehabilitation system in that process?

Mark Schultz:

Well, I would even start before the role of VR, because I think it’s important to establish the expectation very early on, that everyone can work. And I would extend that everyone can go to school. So early childhood, when a family has a child that’s born with a disability it’s necessary, I think, that we reach out and connect those parents to the resources, but to create the expectation that they should have that for their child, that every child should be able to go to school, go to work. And that the families should know that and support that as we move forward.

Mark Schultz:

So, creating that expectation early on is real critical. And then, as VR gets involved early on with the provision of pre-employment transition services with students with disabilities, it’s to support those students as they learn about work and begin to acquire the necessary information, the skills and the experiences to really make informed decisions about their career choices. And then, working with youth and adults to again, help to support their informed choices through some of the career counseling, the work-based learning experiences, training, to acquire skills and knowledge, advocacy in independent living skills, so that they’re able to go to work. And the necessary information to make good informed decisions around benefits and financial decisions. We help with identifying job opportunities and assisting without painting, what I call quality employment, which I think WIOA really says, we should be about quality employment.

Mark Schultz:

And so, that may mean supporting individuals as they advance in a career pathway, so that they’re truly reaching their goals and getting meaningful employment, that it helps move towards economic self-sufficiency.

Ron Hager:

You mentioned benefits. We’ve experienced a lot of times, parents being afraid or concerned about if their student or young person goes to work, that they might lose benefits. So, how important is it for the families to know about how work does affect benefits, and is that a role that VR can and should play in helping make sure families are aware of this information?

Mark Schultz:

Yeah. Particularly when we’re talking about pre-employment transition services, that is something that the VR agencies can play a role in. So, whether it’s counselors, and I know in many States they contract with the WIPA program, other providers to assist with some of the benefits counseling that is occurring. But, it’s so important and critical to families as they make those decisions, and the impact of those decisions on finances and benefits.

Mark Schultz:

So, we really see the need for that. And I think that continues Ron, as individuals progress with their employment as well. So, when they get a job, what are the decisions they should be making about retirement plans and contributing to those retirement plans? Are there consequences if they don’t? And then as well as if they’re still receiving benefits at some level, what’s the impact of advancing in their career and receiving a promotion or an advancement in pay? So, those are critical decisions that need to be supported with the benefits counseling.

Ron Hager:

You talked about the pre-employment transition services, and what we really have now in the federal law with the special education laws and rehabilitation laws is a plan or a hope that the special ed system and the VR system worK together while students are still in school. And I know you will feel that’s critical. What are some things that could be done to make this more effective to really get the two systems to work better together, to meet the needs of students?

Mark Schultz:

Well, as you’ve said, the coordination between schools and the VR programs, it’s key to maximizing those opportunities for students with disabilities, so that they can get the experience and the skills necessary, just as their peers are able to do that, to have those work experience opportunities. And that really creates them that foundation for success later on. So, as you said, that partnership really is built on common goals and values between IDEA and the Rehab Act. And that really is intended to provide for a seamless service, in terms of services and the provision of those services and supports, to help those students with their career goals.

Mark Schultz:

So, some of the things that we’ve done to help facilitate that is again, having RSA and OSEP work on providing some of the support. So, one of those is the transition guide that was recently updated to emphasize pre-employment transition services, and the transition services and how those could be coordinated across systems. In addition, Laurie VanderPloeg, the director of OSEP, and myself just issued a letter that went out to the leadership within VR agencies and schools, special education, that sets the expectation and encourages that collaboration in expecting that VR programs and schools, the LEA, should be working together to coordinate those services. And particularly now during this time where COVID 19 and the pandemic has really impacted on that ability to reach out to students and coordinate.

Mark Schultz:

We’re really encouraging them to look at opportunities to be more flexible, in terms of how those services and supports can be provided. And particularly for schools to work with the VR programs to provide access to those students who may be using remote learning and to be able to connect with those students. Because when they’re not in person, it really makes it much more difficult for VR agencies to do that. So, things that we’re doing to try to expand that partnership and encourage that partnership from the federal level. I think in addition to that one thing I’m really excited about, Ron-

Ron Hager:

Right. Go.

Mark Schultz:

Is, not that I’m not excited enough about this…

Ron Hager:

I could tell.

Mark Schultz:

But, it’s more than just the schools and the VR agencies; there are other partners. And we’ve been having discussions with Julie Hocker, the Commissioner of the Administration for Community Living, about the role of Centers For Independent Living, because they have a core service to transition. And are we connecting enough? And so, we’re having some discussions and bringing stakeholders together right now to talk about how we can collaborate across all those programs to more effectively provide services to students with disabilities. So, look for more to come in that arena.

Ron Hager:

Oh, that’s great. That’s really exciting. I mean, that is one of the problems when we have all these systems in place and they all have their, I would say silo, but it’s not quite that. Them laid out, but to get the system to work together is a critical issue.

Ron Hager:

You mentioned COVID, and one of the things that we at NDRN really appreciated from your office and from you Mark, right from the beginning was the message to the VR system, “We’re open for business. Yes, we have to do things differently, but we are going to continue to push forward, to be creative, to do as much we possibly can to meet the needs of our clients in this environment.” So I’d love to hear you talk a little bit more about the role you’ve been playing, maybe with both hats, in ensuring that the mission is still being met, even in this time of COVID.

Mark Schultz:

Yeah. So, I would just point out, it was my message, Laurie’s message, but also Secretary to Boss’ message, that the expectation that all students have continued to receive educational services, especially students with disabilities was so critical during this time. So, I would say, we can look at COVID-19 a number of ways. And while we certainly see the challenges that exist, there are also many of opportunities that we can look to take advantage of right now. So for VR, what we’re seeing in our discussions with the programs across the country is they’ve been able to, I think, respond admirably by being able to gear up and provide remote services, and to stay connected to individuals with disabilities as they look to be employed. But also to retain jobs that they have through additional training that can connect them to technology and assisted technology that allows them to, if their businesses and jobs have moved to remote or telework situations, to support that transition to those jobs. So, that has been critical to success.

Mark Schultz:

But, there are also jobs out there depending on the service sector for us to connect individuals to. So, they’ve had to be very innovative and creative as they’re working, not just with individuals with disabilities, but also businesses, as they’re sifting to telework, to be able to stay connected to those businesses and to connect them to the qualified workforce that we have and the individuals that we have. So, that’s required programs to adapt their training and to work through telework themselves. So through experienced, they’re able to share that.

Mark Schultz:

But, as I see it, you look at the telework that’s going on right now, and the shift that businesses have had to do to that format, it actually provides greater flexibility because they see they’re able to continue to provide services in that way. That really provides for greater adaptability through accommodations for persons with disabilities. You can allow for different ways of getting work done and greater flexibility in hours as to when that work gets done. So, there are lots of opportunities I think that we can take a hold of if we just stay aware of that, right?

Ron Hager:

Right. Yeah, that’s true for a lot of people with disabilities, that may be reasonable accommodations in their work schedule because of difficulty getting ready or different ways that disability may affect them. It’s just universal design that they can just work at their own schedule and they don’t have to worry about commuting and getting ready. It does open some doors, that’s correct, yes.

Mark Schultz:

Yep. So, I think that’s the important point, is to stay positive about it and look for the… I mean, we could talk all day long about the challenges as well, which we see. Again, I think VR has always tried to evolve with the times. And as I mentioned early on, a hundred years of experience that we have. Times have changed recently, but they’ve been changing for a hundred years. And I think that’s the beauty of the program, is it continues to evolve and adapt to those changes.

Ron Hager:

Right. Right. No, it’s critical as we continue to move forward. Well, is there anything else that you wanted to share with us today, Mark?

Mark Schultz:

I think what I would do is just build off of that last statement. A hundred years of experience, VR continues to evolve. And I just want to assure everyone that’s listening that the VR programs out across the country are out there and continue to serve. And I think some people have assumed because of COVID that perhaps some services aren’t available. But, from our discussions with States, they’ve been sharing with us that they are up and running, whether it would be in-person or through telework, remotely, or some kind of hybrid model. They’re still out there providing services.

Mark Schultz:

Over the course of the hundred years, while we’ve evolved through innovative and creative solutions perhaps, one thing has remained constant. And that is the program’s focus on helping individuals and assisting them to achieve their goals and employment and independence. And we’ll continue to do that well into the next hundred years.

Ron Hager:

Well, thanks again, Mark. I really appreciated spending your time today with us, and I really appreciate your vision, and stay tuned for the next episode.

Ron Hager:

All right. So, thanks again, Mark. And eventually, maybe we’ll see each other face-to-face.

Mark Schultz:

All right. Thanks, Ron. Have a good weekend.

Ron Hager:

Bye-bye. Thanks.

Mark Schultz:

Thank you.

Ron Hager:

Take care.

Curt Decker:

I’m Curt Decker, executive director of NDRN, and thank you for celebrating National Disability Employment Awareness Month with us and our members. We hope you enjoy these podcasts, and we look forward to talking with you more in the future about the important issues impacting the lives of people with disabilities.

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This is the first podcast episode of a series celebrating National Disability Employment Awareness Month. Each part will focus on different aspects of the legal framework of employment and the barriers to economic self-sufficiency. For this first one, we had the pleasure of speaking with U.S. Senator Bob Casey (D-PA) who explains some of the legislation Congress is considering to improve employment opportunities for people with disabilities.

Transcript

Amanda Lowe:

Welcome everyone to Panda Pod, the National Disability Rights Network podcast, where we focus on all things related to protection and advocacy for people with disabilities and advancing the rights of people with disabilities. I’m Amanda Lowe, senior public policy analyst here at NDRN. This year we’re absolutely thrilled to be releasing three podcasts in celebration of National Disability Employment Awareness Month, or as we call it, NDEAM. Each episode in October will focus on different aspects of the current state of employment for individuals with disabilities through the lens of the Americans with Disabilities Act. So before we get started, some quick background on NDEAM. NDEAM dates back to 1945, when Congress declared the first week of October National Employ The Physically Handicapped Week. Since that time, NDEAM has evolved to include not just people with physical disabilities, but the entire disability community. Now, the emphasis has shifted to focus on competitive employment in the community.

The first episode features Senator Bob Casey from Pennsylvania. We were so excited to discuss some of his important legislative initiatives relating to the employment of people with disabilities. It is our hope that each podcast will interest, educate, and motivate you as you celebrate NDEAM 2020.

Senator Casey, we are beyond thrilled, truly, that you’re able to join us today as we kick off our podcast series celebrating National Disability Employment Awareness Month or NDEAM. I just want to take a quick second and also mention and give thanks to your great and fantastic staff for making this happen. Thank you to everyone very much. So in thinking about today’s conversation, we thought it’d be really helpful if we could just start on just a slightly personal note and allow our listeners to get to know you a little bit and your connection to disability rights. Throughout your time in the Senate, you have displayed really true leadership and are absolutely considered a champion for the disability community, and I’m wondering if you might be able to tell us just a little bit about why the advancement of disability rights is so important to you?

Senator Casey:

Well, first, Amanda, thanks for this opportunity. It’s great to be part of this celebration of National Disability Employment Awareness Month. I guess for me, it starts just when I was growing up. It starts with my parents really, and the many lessons they taught me about our own blessings and those who had disadvantages or obstacles to overcome in life, that we had to do everything we could to help them. I just think that was just a fundamental bedrock for me. My father was a public official, so he was obviously more engaged in some of these issues, but I think it starts there. If you believe in the promise of America, you have to believe in, and I think you have to be committed to advancing the rights of people with disabilities. It’s consistent with American values.

It’s not some body of work that’s off to the side. It’s not only consistent with American values, I think it’s in furtherance of those American values that you can advance when you’re advancing the rights of people with disabilities. So I think it’s the fundamental belief that all people should have equal access opportunities that America says that it’s supposed to offer. It says that it will offer. We know, unfortunately from our history, that people with disabilities often have had barriers in their way and obstacles to participating in all aspects of our society. So I’ve had obviously some opportunities myself as a public official to be able to have an impact on these issues. We’re going to keep a focus on this work for as long as the people of Pennsylvania want me to be their Senator.

Amanda Lowe:

Yeah. Thank you for that. It must be really amazing to be able to have something that sounds like a belief that was really cemented for you in childhood, and then be able to really effectuate change and see that belief in action through your work in the Senate.

Senator Casey:

Yeah, just fortunate to have had parents and, I think, a community too. I grew up in Scranton, Pennsylvania, Lackawanna County, Northeastern Pennsylvania. My sense is, and there’s no way to compare this, but my sense is that over time there’s been a recognition in that region about the importance of advancing protections for and rights for people with disabilities. I think my parents reflected that broad consensus.

Amanda Lowe:

That’s really interesting. Thanks for sharing that. So, as we were thinking about how we wanted to celebrate National Disability Employment Awareness Month or NDEAM this year, the National Disability Rights Network or NDRN, we decided to use a lens of the Americans with Disabilities Act or the ADA and the goal of economic self-sufficiency as the way that we’re thinking about employment for people with disabilities. So more specifically the ADA states, “The nation’s proper goals regarding individuals with disabilities are to assure equity of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.” As I was reading that and reflecting upon it getting ready for today, I was thinking that I’m sure that we can all agree that economic self-sufficiency is important to every single individual. However, the ADA specifically highlights that importance for individuals with disabilities. So Senator Casey, I’m wondering why, in your opinion, why do you think economic self-sufficiency is so critical for individuals with disabilities?

Senator Casey:

Well, I think first it’s part of who we are as human beings. You’ve heard the phrase a lot, ‘the dignity of work,’ and that’s part of the answer, is that I think everyone wants to have that dignity that comes from work. It comes from doing a job, meeting goals and earning a living and being able to support yourself. So that’s a big part of it. Economic self-sufficiency as one of those four goals of the ADA is directly connected, I think, to the broader American dream about being able to support yourself and support your family., If you have one, and it’s part of having a purpose in life. You’re directed towards goals, and you have a focus every day to support yourself and to do a particular job.

Unfortunately, it’s been one of the hardest goals to make progress on or to achieve the full measure of the goal, so we’ve got a lot of work to do. I think that for people with disabilities, we still have barriers to economic self-sufficiency that are substantial, not the least of which is that we place asset limits on many of the programs that support people with disabilities. I think your listeners will know better than I, or at least as well as I do, that to be able to qualify for programs like Medicaid or Supplemental Security Income, SSI, or SNAP, the Supplemental Nutrition Assistance, and many other safety net programs, a person can’t have more than $2,000 in assets. That’s a way to keep people in poverty, not a way to help them achieve economic self-sufficiency. It just doesn’t make sense, but it’s one of the many barriers in their way.

So when we consider the ADA more broadly, it prohibited discrimination against people with disabilities, but it didn’t take away every barrier and many of the current policies make it very difficult for a person with a disability to save for their future, whether it’s save for a home or to save to move to another place, or of course even to save for an education. So we shouldn’t be providing people with supports that limit the amount of money they can save for the future. So we finally had a breakthrough a couple of years ago, five years ago now. It’ll be six in December. December the 14th, to be exact, is when the Senate bill passed on ABLE, the ABLE act, Achieving a Better Life Experience Act. It’s one act that I think is a good start at pulling down some of the policy barriers that have been erected over time, but it’s not,, in and of itself enough.

We’ve got to do more. Here’s another example of policy. The Substantial Gainful Activity, so-called SGA limit for a person with a disability is $1,210 a month. $1,210 a month. If you earn more than that, you’re at risk of losing your disability benefits. So it’s, again, it’s another example of a policy not only preventing us from achieving a goal of economic self-sufficiency, but literally keeping people in poverty because you limit how much they can earn. So we’ve to make it possible for people to earn more than that $1,210 a month, if we’re serious about it, ensuring they can be economically self-sufficient.

Amanda Lowe:

Yeah. Thanks for that answer. That was really helpful and thoughtful. I just wanted to focus in a little bit on ABLE Accounts and the ABLE Act that you just mentioned. It’s such an important piece of legislation. I’m wondering if you could tell our listeners who might not be that familiar with ABLE Accounts, what they are, why in your view they’re important and what your goal was with that piece of legislation?

Senator Casey:

Part of it is it’s obviously connected to the goal of economic self-sufficiency, and I think you could also make an argument it’s also related to that sense of dignity that people have, that you can not only work to do a good job and provide for your family and pay your bills and be part of a thriving society in that way, but you can also, if you choose to, set aside money for savings. One of the provisions in the tax law going back a generation was that parents could set aside money for and were incentivized to set aside money for higher education for their children. That made a lot of sense. So we had the so-called 529 plans around for years. But it was literally the state of the law in the United States of America, that if parents had two daughters, one daughter without a disability that they’re saving for higher education for, another daughter with a disability where they could open up a 529 account, but what if that daughter, for a variety of reasons wasn’t going to pursue higher education or the parents didn’t think she would?

There was no savings vehicle for the daughter with a disability for other needs that you would have, not just education, but those I mentioned before, buying a home or saving for rent for an apartment, or being able to buy assistive technology because of her disability. So all kinds of impediments to saving for other purposes other than higher education. So these ABLE Accounts are a way for people who receive federal disability benefits to save for the future. One of the basic reasons is that $2,000 limit, as I mentioned, so now ABLE Accounts allow a person with a disability to save up to $100,000, not $2000, $100,000. To open an account, you have to have acquired your disability before you reach your 26th birthday. We’re trying to move that number up into the mid-forties, age 46. But the money you save in ABLE Accounts has to be used for disability expenses, but that’s a pretty broad category.

You can save for education, moving expenses as I mentioned, if you’re moving for a job, assistive technologies I referred to earlier, or even an accessible vehicle renovations to make an apartment or a home more accessible, which is often a costly barrier to people with disabilities. So when we talk about saving money, we often talk about saving for retirement or saving for higher ed, but we save for a lot of reasons and limiting how much a person with a disability can save means that we’re taking away their options. So ABLE Accounts make it possible for a person with a disability to plan for their future and thereby to better their lives.

Amanda Lowe:

Thank you for that. I think it’s fair to say that ABLE Accounts have really been a game changer for people with disabilities, and I can’t imagine anything that fits more squarely into the theme of economic self-sufficiency. I’d like to quickly turn to another piece of legislation that you introduced I think that focuses on an enabled economic self-sufficiency, but in a different way, and that is the Disability Employment Incentives Act. I’m wondering if you could just tell us a little bit about that and what you think it would mean for people with disabilities?

Senator Casey:

Well, first the Disability Employment Incentives Act provides businesses with incentives to hire people with disabilities. They are incentives that are not just worthy, and if I can say prove their worth over time, but I think are essential if we’re serious about fulfilling or achieving the goals of the Americans with Disabilities Act. So I think that’s critical. In just by way of the background, right now a business can receive up to a $2,400 tax credit if they hire someone with a disability through their state vocational rehabilitation program. But unfortunately businesses, like a lot of programs that are worthy and often advance a particular priority, sometimes there are good programs but folks don’t take advantage of them. In this case, businesses aren’t taking advantage of that tax credit. So one of the ways to do that is to make it more generous.

So I want to more than double that to $5,000 for the first year and continue the tax credit for the second year at $2,500. So take what is now a $2,400 tax credit and make it $5,000 for the first year, and then continue it for a little higher at $2,500 for the second year. So that’s, I think, it’s a better incentive for businesses and it makes a lot of sense to provide that kind of an incentive. Sometimes the incentives obviously are important and at the same time, this legislation would provide tax credits to increase the accessibility of a business, both the physical accessibility and the online accessibility. Obviously, online accessibility has never been more important in the times we’re living. So if we were able to pass this legislation, there’d be an opportunity to get a $30,000 tax credit for improvements to accessibility that a business makes. We wish we didn’t have to provide incentives, but I think it’s important to do so in this context.

Because sometimes a business will say, “Well, I want to do that. I want to provide that accessibility, but it’s costly.” So giving them a substantial tax credit is another way to incentivize those changes. So both incentives to hire and incentives to make changes that will increase accessibility can make a big difference for a small business and can create more opportunities for both hiring and accessibility. So I wanted to leave your listeners with the bill number because sometimes it’s hard to find these bills. The Disability Employment Incentive Act is Senate bill 255. 255.

Amanda Lowe:

Great, thank you for that. I know at NDRN we’re excited about that bill. We’re absolutely supportive of it, and we think it makes all the sense in the world. So thank you for your work on that. Another bill that you’ve introduced that really looks at the incentive idea but from a different way, is the Transformation to Competitive Employment Act. Whenever I talk about this bill, I always say it’s aptly named because it is truly transformational, I think. So I’m wondering if you could just tell us why you felt like this was an important piece of legislation.

Senator Casey:

Thanks. I appreciate you highlighting the Transformation to Competitive Employment Act. I’ll give the bill number, Senate bill 260. 260.

Amanda Lowe:

Thank you.

Senator Casey:

This bill would provide employers who currently pay sub-minimum wage to people with disabilities with funds to help transition their business model from sub-minimum wage to at least minimum wage. Again, one of those goals to achieve and barriers to tear down. Right now, we’re told that about 125,000 people in the country are paid subminimum wage. What we’re trying to do here is to protect these jobs and honor their work while also helping their employers to adapt their business model to be one that is competitive, a different model really, a competitive integrated employment model, as opposed to what they have now. I think it’s a recognition, the bill is a recognition we’ve got to help them do it.

Sometimes government is great at mandating or directing folks to do something, and sometimes we don’t provide enough help to businesses to make that transition. So this bill would provide them with funding to help them change their business model, transition to minimum wage. There’s obviously a whole other fight to raise the minimum wage overall, which we have not won yet. I’ve been in the Senate, I guess, 14 years, and the last time the federal government raised the minimum wage, it was my first year in the Senate. So it tells you how, even on raising the minimum wage nationally, it’s taken us years. Still haven’t done it yet. But as a transition or model from a sub-minimum wage to a minimum wage business, you’d be able to phase out the sub-minimum wage certificates over a six-year period.

So we don’t want to mandate and not give them help. We don’t want to mandate and say, “You have to do it in a one-year timeframe or a short time,” where we give them six years. So I think it’s a responsible way to make sure we can help the businesses so we don’t lose the jobs, and that the work that people with disabilities do is respected. One of the most inspiring things or inspiring opportunities I’ve had is to go to some of these work sites. I haven’t been to 50 of them, but I’ve been to several. It’s remarkable. You walk into it. For example, I remember being in a big warehouse in York County, Pennsylvania right down by the Maryland border. It’s a big county and they’ve got a lot of manufacturing in that county, a very high percent of manufacturing, which is not true of a lot of places in our state.

This warehouse was a very busy place and they were introducing me to some of their workforce, young people that had a disability and were working in that warehouse where you got to keep things moving, on time delivery or movement of cargo or material, or what they’re moving out the door every day. It has to be geared towards schedules and the pace and intensity of it, of a business, and just glowing remarks about the members of the workforce, the employees who had a disability, their work ethic, their on time performance, their dedication, their attitude.

Senator Casey:

I mean, everything you would want in an employee, they’re seeing. So over and over again, there’s evidence over many years now that people with disabilities can do really good work and they can progress in at work. They don’t have to stay in the same job for years and years. Some might have to because of the severity of the disability, but many others can advance. So we’re trying to indicate through this legislation that we can move to a minimum wage model and affirm the dignity of their working and show them the kind of respect that workers should be accorded.

Amanda Lowe:

Thank you for that, and thank you for your leadership on this bill. I know that NDRN and the P&A’s have done an enormous amount of work around sub-minimum wage and ending sub-minimum wage and sheltered workshops. We really view… I think you used the word responsible when you talk about this bill, and I think that this bill is absolutely responsible and it looks at these issues in a very innovative and comprehensive way. So thank you for your work and leadership on that. I wanted to quickly touch on, when we were thinking about this podcast, I really don’t think that we can have a podcast in this time that celebrates National Disability Employment Awareness Month without considering the times we’re in and specifically COVID-19 and the tragic impact that we’ve seen in the lives of individuals with disabilities, more specifically narrowing down the effect that that will have on the employment of people with disabilities, and as it relates to their economic self-sufficiency.

I’m just wondering, have you been hearing things from your constituents about this, so about employment with people disabilities and economic self-sufficiency during COVID-19, things that keep you up at night or things that weigh on your mind that you’d like to share with our listeners?

Senator Casey:

Yeah. Thank you for that question, because there’s a lot, of course, at a time like this, where you have the worst public health crisis in a century and the kind of economic devastation that has flowed in its wake, and we’re really in a jobs crisis at the same time we’re in a public health crisis. That’s evident across the board for everyone. We also know that in the midst of that, many people with disabilities have been working throughout the pandemic and obviously putting themselves at risk, in many instances, because of the work that they do and the job that they have. They’re often providing essential services in all kinds of settings, grocery stores, hospitals, in many of the services that have remained open during the pandemic. So it’s a good example of what we talked about earlier, that the work that people with disabilities engage in is essential and that they do the work reliability and with great pride, and in this case, often under the real threat of danger coming from the virus.

So I worry that for others in the disability community, the return to work will be slower than it is for the rest of the population. So you have some working as essential workers on the front lines every day who are putting themselves at risk. That’s one problem. And then you have others who may be at home like a lot of us have been, working from a distance, or maybe unemployed too, in many instances, but getting them back to work could be a lot slower than the rest of us. We know that after the last economic calamity of the Great Recession about a decade ago, a little more than a decade ago now when it started, but the return to work for people with disabilities never reached the same level as before the recession.

You’ve seen those numbers on the workforce participation rate for people with disabilities. That has always been a lot lower than people who don’t have a disability. So that’s a worry, as well as the worry that someone with a disability would obviously contract the virus and put themselves at risk. So we’ve got a lot of work to do both to provide better protection for those in the workforce, both people with disabilities and people who don’t have disabilities, but we also have to undertake, I think, a more focused effort in creating pathways for people with disabilities to get back to work if they’re not looking now because they’re often hardest to transition. We have, unfortunately, a long history of that workforce participation rate being lower, meaning people with disabilities are employed at lower levels. But this transition back to work, for many, could be especially difficult.

Amanda Lowe:

Absolutely. Thank you for sharing that with us. This segues perfectly into my final question as we close up here, which is where… You’ve talked about the ABLE Accounts and the two pieces of legislation where you’ve really just demonstrated such wonderful leadership and a very thoughtful approach to a way to address these issues around employment for individuals with disabilities. I’m wondering, where do you think we go from here as we try and really fulfill this goal of economic self-sufficiency as laid out in the ADA?

Senator Casey:

Well, as difficult as this time has been and is now and will continue to be for a good while yet, because I’m not an epidemiologist or a public health professional, but my gut tells me and some of the reporting tells me that we’re going to continue to have to wrestle this virus to the ground, and we hope for a vaccine as soon as possible, but it has to be done the right way and it has to be safe and effective, and the distribution of it has to go well, but we’re going to be dealing with the virus for a good while yet, months, if not many months. I think the economic crisis for many will be, unfortunately, a crisis that will last for years, not months. That’s because even when the unemployment rate goes down, as I’m sure it will between now and the end of the year, there’ll still be a group of workers out there who will be hardest to employ or hardest to re-employ.

We’re going to have to undertake brand new approaches. We were going to have to think of ourselves as coming out of the Great Depression, not the Great Recession. So I’ve got a lot of ideas about resuscitating the works progress administration type jobs program. We’re going to have to literally use, I believe, one of several things we’re going to have to do, is to use federal dollars to employ people directly. Now, some in Washington won’t want to hear that. They’ll criticize me for it, but we can’t sit around and hope that incentives and the private sector magically bring folks back to work. One of the best ways to get people back to work is to hire them. That’s, at least, my view. That applies, obviously, to creating opportunities as well for people with disabilities. One of the things we’ve learned in the last six months is that much of the work we do can be undertaken remotely. Most people have become much more familiar with how to work remotely and, to a certain degree, with a lot of success.

I hope and I think we should strive to make sure that that means that many people with disabilities will have a greater chance to work, and that employers will realize that remote work and work that requires accommodations as the ADA enshrined, that any work that requires accommodations can be just as productive as working in a physical office. That workers of all kinds, including workers with disabilities, can contribute substantially to the bottom line of a company by working remotely and having a few accommodations in place. We also still need to ensure that all paths to economic self-sufficiency are clear. We need to eliminate policies like the so-called low SGA limit. We need to incentivize employers to hire people with disabilities. As I said, we talked about the bill that we have. We need to make sure that the resources to accommodate people with disabilities are available in their workplaces.

So even though we’ve come a long way in what I guess is now 32 years since the first National Disability Employment Awareness Month is celebrated, we still have a ways to go. I don’t know how long the road is, but we know that we’re still on the road and we probably can’t see the end of the road. We haven’t met the goal of economic self-sufficiency, one of the four goals of the ADA, so we’ve got some work to do. But I appreciate you and NDRN and the millions of disability advocates and stakeholders around the country who were laboring in the vineyards, to borrow a line from the scriptures. You’re laboring in that vineyard every day to help people with disabilities, and I look forward to continuing to work with you.

Amanda Lowe:

Well, thank you so much. I know as I’ve just listened to you talk about your thoughts for the future, I’m heartened and energized. I just know that you’ve shown such leadership and will continue to do so. On behalf of the NDRN and all the P&As, we are incredibly grateful to you for all your work around disability rights. So thank you so much for joining us today.

Senator Casey:

Amanda, thank you.

Amanda Lowe:

We really appreciate your time.

Senator Casey:

Thank you.

Curt Decker:

Hello. I’m Curt Decker, executive director of NDRN. Thank you for celebrating National Disability Employment Awareness Month with us. We hope you continue tuning in all month as we talk more about the importance of employment and the dignity of work.

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The PandA Pod continues with our three-part series called Disaster, Disability & Democracy! This series focuses on voting rights and census participation of people with disabilities, and how these areas of democracy relate to disasters and emergencies.

The PandA Pod content is all about P&As and provides useful and entertaining training and technical assistance to P&As and our allies in an all-new format. Keep coming back to the PandA Pod for a range of disability rights related topics from some of your favorite National Disability Rights Network (NDRN) staff and our special guests all year long.

In this third episode of the PandA Pod, entitled “Stories of Democracy when Disaster Strikes,” NDRN hears the stories of the P&As who are out on the front lines every day ensuring that the rights of people with disabilities are not dismissed when disaster strikes. First, we hear from Zachary Borodkin of Disability Rights New York who shares his experiences during Super Storm Sandy in 2012. Then we hear from Stephanie Duke of Disability Rights Texas who explains why census participation before and after emergencies is so important for people with disabilities. Lastly, we hear from Carol Starchuski of Disability Rights Florida who explains her experiences following Hurricane Michael in 2018.

Transcript

Justine “Justice” Shorter:
Greetings everyone, and welcome back to NDRN’s podcast called the PandA Pod, where we focus on all things related to Protection and Advocacy for people with disabilities. I am Justine “Justice” Shorter, Disaster Protection Advisor here at NDRN, where I focus on all things related to disasters, fires, humanitarian crises, and other emergencies, and I am joined today to my right by the phenomenal Erika. Erika, how you doing today?

Erika Hudson:
Great, thank you very much. This is Erika, Public Policy Analyst with NDRN, focusing on census, or as we like to call it, the big C-

Justine “Justice” Shorter:
The big C.

Erika Hudson:
… here in the studio. And to my right, I had to double-check that.

Michelle Bishop:
I saw you. I saw the hesitation in your face.

Erika Hudson:
On my right or my left. To the right.

Michelle Bishop:
This is Michelle Bishop, Voting Rights Specialist at NDRN, here on the PandA Pod with you today, the podcast filled with pandemonium.

Erika Hudson:
Oh.

Justine “Justice” Shorter:
We knew she had to do it.

Michelle Bishop:
I stole a pun from Erika.

Justine “Justice” Shorter:
We knew it had to happen.

Michelle Bishop:
It’s a big day. Big day here at NDRN.

Justine “Justice” Shorter:
Today has to be a big day because it is also the last day of this series all focused on disability, disaster and democracy. It is our final episode in this three-part trilogy.

Michelle Bishop:
Justice give me a beat, (singing). Erika, do you even know that song?

Erika Hudson:
I have no idea but I’m impressed.

Michelle Bishop:
(singing).

Erika Hudson:
That was a good one.

Justine “Justice” Shorter:
Yeah, did you hear all all up in the [inaudible 00:01:32].

Erika Hudson:
I did, wow.

Michelle Bishop:
All right, we’ll do a whole other series where we introduce Erica to ’90’s RnB.

Justine “Justice” Shorter:
And we’ll also be releasing a mixed tape coming up soon maybe and dropping at the end of the year. We don’t have any approval to do any of that, but hey, we have a mic.

Michelle Bishop:
Don’t worry the PandA Pod is here to stay. There are other NDRN staff that are eagerly cooking up spicy new content, including Erika and I who are working on PAVA with Java, a PAVA podcast.

Erika Hudson:
You heard it here.

Justine “Justice” Shorter:
Wait a minute though, if there’s anyone out there who does not know what PAVA is, could you tell them?

Michelle Bishop:
Oh, Protection and Advocacy for voter access.

Justine “Justice” Shorter:
There we go.

Michelle Bishop:
They better know what it is.

Erika Hudson:
Hello.

Michelle Bishop:
Yes, we’ve got new content coming on the Panda Pod where Protection and Advocacy for people with disabilities is always on the menu.

Erika Hudson:
Literally the only thing on the menu but that’s fine.

Justine “Justice” Shorter:
And we’re proud of that, that’s very clear. That’s why we’re proud.

Michelle Bishop:
The truth, truth.

Erika Hudson:
But so thrilled to hear that the PandA pod is here to stay ladies and hopefully with us as the three hosts, and as we’re already the host for today’s episode, we’re going to take it away and let you know where we’re going to be talking about today.

Justine “Justice” Shorter:
Absolutely. We have three phenomenal stories today and I think the content is pretty good. Michelle, would you agree?

Erika Hudson:
I’d like to say just to interrupt, they’re very captivating. It’s like an episode of Grey’s Anatomy.

Michelle Bishop:
Okay, that’s a bit of a stretch.

Erika Hudson:
No.

Justine “Justice” Shorter:
But good.

Erika Hudson:
Grey’s Anatomy has been on air for like 16 years. Imagine us in 16 years we’re going to be sitting in this studio.

Michelle Bishop:
We will not be. Nobody wants to watch 16 years of my life. Listen-

Erika Hudson:
I would. I think that would be fascinating. Just like the Panda Pod.

Justine “Justice” Shorter:
The PandA Pod is fascinating. Not sure about the other things you’ve mentioned. I’m sure that this episode in particular though is going to be something that you want to stay tuned for. We have some wonderful folks from the network, the P&A network PandA network here who are going to be giving us some of their personal perspectives on these issues. And when we say these issues, we mean voting rights after disasters and the census. Isn’t that right?

Erika Hudson:
Oh yeah. Later in the episode we’ll connect the census to disaster assistance with Stephanie Duke from Disability Rights Texas.

Michelle Bishop:
And then we’ll get on the road after Hurricane Michael with the Carol Starchuski from Disability Rights Florida. But first-

Justine “Justice” Shorter:
But first we’re going to start out with the gentlemen who inspired me ladies. He was my inspiration for getting this particular series started on disability, disaster and democracy. He was a very active and eager individual who really, really cared about these issues. And everything that I do is driven by what the P&A network tells me that they need, which is what all of us do. So this gentleman’s name is Zachary Borodkin and he is a voting rights specialist coming out of Disability Rights New York.

Michelle Bishop:
Go voting rights specialist.

Erika Hudson:
Excellent.

Justine “Justice” Shorter:
Go New York. You’re a New York girl, yes?

Michelle Bishop:
Both true.

Justine “Justice” Shorter:
All right. Hey now and so Zach has a truly stunning story that talks about his experience during super storm Sandy in 2012. We do think that you all will enjoy it. I don’t even need to say anything else. I’ll let Zach take it away.

Zachary Borodkin:
Hi, my name is Zachary Borodkin. I am a voting rights advocate with the New York P&A, which I have been working at for a little over a year now. My story begins on October 29th, 2012. It is just before 8:30 PM and I and a friend of mine are watching TV, and all of a sudden at 8:30 the lights go out. And that was the time that hurricane Sandy basically struck down on New York city, and my power would go out for the next five days.

Zachary Borodkin:
I couldn’t get out of my house because the elevator wasn’t working, and I couldn’t get to work. So I was basically stuck in my apartment for that week while the city recovered from the effects of Hurricane Sandy. Now in this time because there were no electronics, I spent a lot of time thinking about what was happening around me. Because this was also a presidential election year and I knew that the governor of New York, Governor Cuomo had already declared an emergency in the days leading up to hurricane Sandy.

Zachary Borodkin:
But I was curious as to the other decisions that were going to be made around accessibility and access for people who could not get out of their buildings or who were trapped in the city and couldn’t get out. I realized that when you vote, because again, this was a presidential election year, when you vote, you’re not just voting for the governor or the president or the person who’s going to hold that specific position in public office.

Zachary Borodkin:
You’re voting for the process behind the decisions that they make. And part of that decision-making process involves people that they put into power to make decisions on issues involving education and issues involving emergency management. Because the governor or the person appointed cannot make those decisions on their own, they appoint people to make those decisions and have them carried out.

Zachary Borodkin:
I think this is why people should vote in general and following major disasters because you’re putting the person in charge who is responsible for giving someone else the power behind the decision making process. And part of that decision making process during hurricane Sandy was the recovery effort to help New York City recover. And since it was a presidential election year, a decision was made to have people vote from anywhere via affidavit ballot because some of the poll sites had been affected by Hurricane Sandy.

Zachary Borodkin:
My poll site was at the LGBTQ center on 13th street and Eighth Avenue. It was right where St. Vincent’s hospital used to be and that whole area was devastated. It was the decision of the governor to have people fill out affidavit ballots to vote from anywhere, and it was the decision of the governor to appoint an emergency manager who would decide on the recovery following Hurricane Sandy.

Zachary Borodkin:
This is an important reason why people should vote in general, because again, they’re voting not just on the person who’s going to hold high office, but they’re voting on the decision-making process. They’re voting on the people that the governor is going to put in power that’s going to be behind the decision-making process that’s going to affect their lives. This is an understated reason, but it’s a very crucial reason why people need to vote because these decisions affect everybody.

Erika Hudson:
Thank you so much, Zach. And now we go to Stephanie.

Stephanie Duke:
Hello, my name is Stephanie Duke. I’m the equal justice work disaster recovery legal fellow at Disability Rights Texas. I have been working in the Houston office for almost two years since hurricane Harvey hit after 2017. Disasters are catastrophic events, which range from terrorist attacks to extreme weather occurrences. And today the reality of it is that they’re increasing in numbers and in severity.

Stephanie Duke:
In 2019 alone, there were over a hundred declarations with damage assessments at over $91 billion. And in addressing means after disaster, previous traditional models have focused on self preparedness to potentially alleviate consequential costs. While this method has lessened some expenses, the exponential costs have not been decreased, so there’s been a new process that looks at the whole community or community resiliency approach.

Stephanie Duke:
Community resiliency has become the central framework guiding disaster preparedness and planning efforts with researchers, practitioners who are in policy-making involved and focusing on the factors that communities need. Different conceptualizations of community resiliency emphasize that communities have different types of resources or capital. However, if individuals with disabilities are not personally participating in these community resiliency efforts, their needs are not accounted for unless data from other resources is being used.

Stephanie Duke:
This is where the census comes in and is so important because the Census Bureau provides… They’re the agency for producing data about American people and our economy. At the national level, the Bureau was part of a number of different emergency management working groups organized by FEMA to coordinate the federal government’s disaster response and recovery efforts, which address economic recovery, health and social services recovery and community planning.

Stephanie Duke:
The Bureau also employs the emergency preparedness and response team to provide data about their population directly to units of local government. Without good responses to the census in the survey, the Bureau is unable to provide data to the units of local government and preparing and responding to emergencies.

Stephanie Duke:
Why is this so important? Basically comes down to numbers and the data because the data is going to provide how much money units of local government need. In preparing or responding to disasters, FEMA has a comprehensive planning guide that generally offices of emergency management typically follow to provide emergency services.

Stephanie Duke:
This guide emphasizes a community approach as well and reiterates the jurisdiction’s obligation and planning. These plans, whether it’s emergency operation plans or standard operating procedures include integration with other agencies such as but not limited to health and human services, the police, fire department, transportation to address the unique needs of that community.

Stephanie Duke:
Those units of local government rely on the data from the census to plan and respond to emergencies. So for example, when you’re looking at an area and how many hospitals they have, if one geographic area has one hospital and another geographic area has multiple hospitals, but they potentially could both be impacted, obviously, the area with one hospital is at higher risk for being able to not serve the community needs.

Stephanie Duke:
In general, that’s what they’re looking at. But specific to individuals with disabilities, knowing how many individuals in the area with disabilities that require a continuum of care would help them provide and plan for emergency responses. Another example is in general to local government in preparing request rescue equipment. They look at per-capita needs, but when addressing the specific needs of individuals with disability, they may need modified equipment or in the alternative training for first responders.

Stephanie Duke:
So that census, that data from the census is crucial in preparing what the community needs to address the potential disasters. FEMA also uses the data from the census to identify vulnerable communities and create a vulnerability index to assist with potential aid for public and individual assistance. This index is used to plan for mass care and emergency shelters and disaster response centers.

Stephanie Duke:
This data can also help staff shelters with medical and health professionals, but also potential need for durable medical equipment or other accommodations such as possible interpreters or assistive technology devices in order to allow accessibility to the shelters or disaster resource centers. So that’s kind of just emergency and response.

Stephanie Duke:
Then you go to the next phase with longterm recovery, which is administered by another agency after the short term recovery phase. And generally, and this all comes back down to money, it’s through a different funding source, but it’s all contingent on state and local plans, which is also again based on census data. And application for these funds, these plans rely on statistics in addressing the demographics in their specific area.

Stephanie Duke:
Without accurate data from the census, the needs of the community and specifically individuals with disabilities will be missed and not accounted for. For example, in a state mitigation plan seeking funds for reconstruction or rehabilitation of residences, individual residences, they may be requesting funds for elevation in a certain area because they’re on a flood plain. Specific to individuals with disabilities, there needs to be a discussion about accessibility, whether they’re going to need elevators or other ways to access these elevated homes. The data would help to identify those with potential mobility issues within a certain jurisdiction or region.

Stephanie Duke:
FEMAs vulnerability index does not include those denied because their homes were safe to occupy. So we still have tons of families, thousands actually that have unmet needs because they weren’t given any aid from FEMA. So when the state or local jurisdiction is relying on census data, they can look at individuals with disabilities in those areas to determine the potential impact of those unmet needs for the state planning.

Stephanie Duke:
The state mitigation plan also addresses those relying on public housing, and would potentially need relocation assistance specific to individuals with disabilities. It could produce access to affordable housing and other options and how many they’re having to target and look at. So it’s important for people to remember that the key to disaster preparation and response is responding to the 2020 census. This will lead to more effective and efficient emergency management and rescue operations as well as allocation of funds for rebuilding communities after a disaster.

Erika Hudson:
Excellent. Thank you so much, Stephanie. And now Carol, take us away.

Carol Stachurski:
Hi, this is Carol Stachurski with Disability Rights Florida. I’m here today to tell you a story about us working both our voting project and our emergency management project at the same time. As most will remember, we had a pretty devastating hurricane up here in the panhandle of Florida, hurricane Michael that had a lot of damage. Unfortunately, this hurricane hit right during voting, open voting.

Carol Stachurski:
We were concerned that polling places were open and running and buildings were not damaged, and how the different supervisors of elections dealt with making it all work so that people could vote. During early voting and on election day.

Carol Stachurski:
Hurricane Michael hit on October 10th, 2018. We here at the Disability Rights Florida got in our car on October 31st, which gave a good couple of weeks so that we didn’t get in the way of emergency management personnel, which we did not want to do and a good amount of time for the roads to get cleared.

Carol Stachurski:
On October 31st, we hopped in the car and we went to each one of the counties in the Florida panhandle that had been declared a disaster area by the governor and by FEMA. We started out in Tallahassee and the first one we hit was Gadsden County. What we wanted to do was get a picture of what kind of damage each one of these counties had, and how they dealt with it, and how it was working for them at the time during early voting and what their plans were for election day.

Carol Stachurski:
The first place we went was Gaston County, met with the supervisor of elections. They were very available, very accommodating. We went right to their office and got a report of how they were doing. They had to relocate one precinct due to building damage. They relocated the precinct to a library and they report everything is going well. Of interest was how they let voters know. They said they used the newspapers and postcards and a sign at the old precinct to notify voters of the change of location.

Carol Stachurski:
There was power available in all the precincts. The staff felt they were ready and had not run into any significant issues. Then we got back in the car and drove onto Jackson County. Met with the supervisor of elections in Jackson County. And as I’m telling my story, you will notice that we’re going from Tallahassee, which had just minimal damage into Panama City, which had the worst. So we see more damage as we’re going along.

Carol Stachurski:
Back to Jackson County, they were very accommodating, met with the supervisor of elections. They said they had no voting equipment damage. There was damage to a good number of structures that were planned voting sites. They said normally they have 14 early voting sites, and they have opened polling places at emergency staging areas and distribution centers. The Department of Transportation put out voting information signs throughout the County and provided the Secretary of State’s office cell phone number.

Carol Stachurski:
Information on the changes was shared via television, newspapers, at the college, at the chamber of commerce and at schools. They used signs at the closed polling sites so that people would know where to go for the new one. They also received generators from the Secretary of State and from Leon County supervisor of elections just in case. Power was on in all of their sites, but power was sketchy at the time. It would go in and out a lot. So they had standby generators just in case.

Carol Stachurski:
The early voting sites also were accepting vote by mail ballots, which was not the plan in the beginning. The regulation was if you were more than 20 miles from one of the new voting sites that you could bring a mail-in ballot to the supervisors of elections office. They had requested extra vote by mail ballots from the supervisor or the secretary of state’s office in Tallahassee.

Carol Stachurski:
Many of the churches were providing rides to the new polling places free of charge. Immediate family members were allowed to pick up vote by mail ballots to mail to displaced voters because a lot of voters were not in the area anymore. They were in shelters that might’ve been throughout the state or even another state. They were really good about sharing information and what their plans were.

Carol Stachurski:
They said they used social media in addition to some of the other avenues to announce the changes. Excuse me. Then we moved on to Calhoun County, met with the supervisor of elections there. They’re very available, very accommodating. They reported that all of their equipment was undamaged and functioning properly. They did have to move one site to a high school gym because of building damage.

Carol Stachurski:
One of the sites was under a tent. They had AC in the tent. It was one of those big FEMA type tents so it had AC. They were working with television, radio and telephone notification of the changes. The supervisor of elections in that County felt that they were in good shape and they did have generators available just in case. Then we moved on to Liberty County and the supervisor of elections was not there, but we talked with their staff and let’s see, they had no changes of locations at all.

Carol Stachurski:
All eight sites that were originally scheduled for voting had power. They did have generators at each one of the sites just in case. Then we moved on to Bay County, which is Panama City, which got the most of the damage, which had some interesting stories. We met with the supervisor of elections. He told us that they had spent the night in the supervisor of elections office where all the servers were because they were a little concerned. So staff spent the night there.

Carol Stachurski:
They did lose their roof during the night, and all of the water flooded into all of the servers for the voting equipment. Miraculously, and anyone that works with IT will shake their head at this. They were able to take all of the servers, take them outside, take the cover off. This is the next day when the sun is finally shining, take the covers off, dump the water out and lay them out in the sun to dry, and every single one of them worked. So that was really surprising.

Carol Stachurski:
Most of the buildings in Bay County were damaged. They had originally 40 early voting sites planned for early voting and most of the buildings were damaged and they ended up with six, what they call mega voting sites, which is they found a large building that didn’t have damage that was ADA accessible. And so they moved from 40 sites to six. It caused some issues with transportation because people had to go much farther distances.

Carol Stachurski:
But again, a lot of the local churches and FEMA and the NAACP all got together and provided as many rides as they could. So they used public service announcements to advise the public of changes including radio and television and social media. Bay County asked Disability Rights Florida to put it also out on their social media. So they tried to hit as many outlets as possible.

Carol Stachurski:
They said the Secretary of State from Florida had visited the supervisor of elections office three times already. I don’t think the mega voting sites were probably the most efficient way to do this. But with anybody who was in Panama city after hurricane Michael, there were very few undamaged still standing buildings. They didn’t have a lot to choose from.

Carol Stachurski:
So that was a story of how we combined two projects together, our voting project to make sure people with disabilities had access to voting, and our emergency management project, which we use to monitor how communities and people with disability are reacting and responding to a disaster.

Justine “Justice” Shorter:
Carol, that was a wonderful and amazingly enlightfull ride, ladies would you agree?

Michelle Bishop:
Yes. Thank you so much to all of our guests today. These stories were amazing.

Justine “Justice” Shorter:
And what a wonderful way to close out this series guys. Just ending it with the voices of the folks who are out there on the front line doing this work to ensure that the rights of people with disabilities are not dismissed, disregarded, ignored, pushed to the side, yeah.

Erika Hudson:
Absolutely. I like how you said dismissed and you said another word that started with a D.

Justine “Justice” Shorter:
Yeah, I was tying in our 3D theme and the same thing.

Erika Hudson:
I was going to say 3D theme, I like it.

Justine “Justice” Shorter:
All of things going on. Yes, but I mean we’re literally closing out this entire series about disability, disaster and democracy and I think that there were so many wonderful jewels that were dropped throughout the entire series. And do you guys have any favorite moments at all?

Erika Hudson:
Power at the polls. Loved it.

Michelle Bishop:
I was going to say when you coined the phrase the big C for census.

Justine “Justice” Shorter:
That was a moment. That was a moment, you know what I mean? I did it for the culture. I did it for the culture.

Michelle Bishop:
That was a moment.

Justine “Justice” Shorter:
Yeah.

Michelle Bishop:
I noticed nobody said when I sang Boys to Men for you. But that’s okay. My feelings aren’t hurt at all.

Justine “Justice” Shorter:
Yeah, nobody mentioned the backup vocals that I provided, which became the foreground vocals.

Michelle Bishop:
So really our only audience was Erica and she was not impressed.

Erika Hudson:
Clearly

Justine “Justice” Shorter:
I took it from the background to the foreground and nobody cared. And it’ll take a lot of work to get those vocals in line. Anyway, it’s fine. I think that this was such a pleasure to do this series with you all. I think it puts us in a really wonderful position to inspire other folks to listen and then also other staff members to get involved. Because I think people are going to enjoy getting their content, technical assistance training type of material in a different format. Yeah.

Michelle Bishop:
Yes, and it’s 2020 so keep an ear out. Not an eye I suppose an ear out for a new series coming from Erica and I, PAVA with Java.

Erika Hudson:
Yes.

Michelle Bishop:
Where we’ll be talking about elections and voting rights all throughout 2020.

Erika Hudson:
2020 it’s a big year.

Justine “Justice” Shorter:
Okay, wait a minute. I feel like there’s a lot of tea that will be spilled about the census and the elections. So what’s in your mug?

Erika Hudson:
I see what you did there, I like the tea thing.

Justine “Justice” Shorter:
Steamy, steamy. All right.

Michelle Bishop:
Justice is definitely auditioning to be a guest.

Justine “Justice” Shorter:
Well listen, I’m just out here. I’m just doing the work on a day to day basis. Put me in the time. Put me in the time.

Erika Hudson:
I love it. We want to be sure to thank everyone who listen and the folks on the NDRN team who helped us put this podcast together.

Michelle Bishop:
Oh, shout out to Tina Pinedo.

Justine “Justice” Shorter:
Yeah, who is our audio engineer. We also want to shout out our IT specialist who is such a phenomenal guy. His name is Charles and he does a lot of the hookup. He helps us out with a lot of stuff.

Michelle Bishop:
Charles is the fixer of all thing in here.

Erika Hudson:
We wouldn’t be here if it weren’t for Charles, quite frankly.

Michelle Bishop:
I wouldn’t have my life together if it wasn’t for Charles.

Erika Hudson:
Never.

Justine “Justice” Shorter:
Yeah. I’ve got to give my mom some of the credit for this. But yeah, no I think Charles is a big part of this as well. I see. All right. Good to know.

Michelle Bishop:
Oh, Carol Bishop, I’m so sorry.

Justine “Justice” Shorter:
But what we’re trying to say in a very roundabout way, is that there is a whole team that’s involved with putting these things together, right? So we want to give a shout out to the comms team, the admin team, just everyone who was supportive of just even the smallest details from helping us to get to the rooms booked and get the equipment secured. But then also all of the folks who participated throughout the series, we have some stunning interviews and really, really great stories.

Erika Hudson:
Oh, and they’re doing great work on the field every day.

Justine “Justice” Shorter:
Yeah, so it’s been a joy.

Michelle Bishop:
Stay tuned in everyone. There’s way more coming for you on the PandA Pod. The PandA Pod.

Justine “Justice” Shorter:
We’re out.

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The PandA Pod continues with our three-part series called Disaster, Disability & Democracy! This series focuses on voting rights and census participation of people with disabilities, and how these areas of democracy relate to disasters and emergencies.

The PandA Pod content is all about P&As and provides useful and entertaining training and technical assistance to P&As and our allies in an all-new format. Keep coming back to the PandA Pod for a range of disability rights related topics from some of your favorite National Disability Rights Network (NDRN) staff and our special guests all year long.

This second episode, entitled “U.S. Disaster Funding & Assistance Counts on an Accurate Census,” NDRN chats with Denice Ross, a Fellow-in-Residence at the Georgetown Beeck Center, who explains how census data impacts emergency preparedness and disaster assistance along with why households need to respond to the 2020 Census.

Transcript

Justine ‘Justice’ Shorter:

Greetings everyone, and welcome back to the PandA Pod, NDRN’s podcast all about protecting the rights of people with disabilities. I am Justine “Justice” Shorter, Disaster Protection Advisor here at NDRN. That means that everything I do focuses on disasters, fires, humanitarian crises and other types of emergencies. And today I am joined here by the magical Michelle. Michelle, how are you doing?

Michelle Bishop:

I don’t know how to follow that. The magical Michelle. I like that, though.

Justine ‘Justice’ Shorter:

Come on, talk to me about that PAVA, PAVA java.

Michelle Bishop:

This is Michelle Bishop, Voting Rights Specialist here at NDRN. I work on elections. There’s nothing else. I don’t have to hype that up. It’s 2020. It speaks for itself.

Justine ‘Justice’ Shorter:

Ooh, okay. That sounds like a jab and I’m going to have to come back to you a little bit later with that, but yeah.

Michelle Bishop:

Let’s move it to Erika.

Erika Hudson:

Thank you, ladies. No worries. My name is Erika Hudson. I’m Public Policy Analyst here at NDRN focusing on census, which is the core of our podcast today.

Michelle Bishop:

And if you listened to our first episode, you know it’s now called the big C.

Justine ‘Justice’ Shorter:

Absolutely.

Erika Hudson:

Apparently, which-

Justine ‘Justice’ Shorter:

Coined by me. I take full credit.

Michelle Bishop:

No one else actually says that, fortunately.

Erika Hudson:

On today’s episode of Disability, Disaster and Democracy, we will be focusing on census data and how it impacts emergency preparedness and disaster preparedness. Ladies, you all know Census 2020 is coming.

Justine ‘Justice’ Shorter:

The census is coming.

Erika Hudson:

The census. May the odds be ever in our favor. Duh-duh-duh.

Michelle Bishop:

Mm. It was so many mixed metaphors.

Erika Hudson:

I know. There’s a lot going on in here.

Justine ‘Justice’ Shorter:

Yeah, it was like a movie trailer. There was some Hunger Games stuff in there, but that’s how we roll.

Michelle Bishop:

Game of Thrones, a little bit of Hunger Games. Honestly, it’s making census sound a little bit scary.

Erika Hudson:

But you know it does just make census to talk about a census, doesn’t it?

Michelle Bishop:

They don’t call Erika the queen of the pun for nothing.

Erika Hudson:

That’s what I’m saying.

Justine ‘Justice’ Shorter:

Yeah.

Erika Hudson:

Well, ladies, before we get started, I need to run by some census facts here. You all ready?

Michelle Bishop:

Probably not ready for the census, but-

Justine ‘Justice’ Shorter:

I am ready for you to stack those stats.

Erika Hudson:

Like pancakes up in here. Okay. Now I really want pancakes. But nonetheless-

Michelle Bishop:

Pancakes just sound really good.

Erika Hudson:

They do.

Michelle Bishop:

Okay, let’s talk about something else.

Erika Hudson:

Yeah. Well, census, on a serious note, it is mandated by the constitution. It’s in article one, section two, and it’s federally mandated that we count every single person in the United States every 10 years.

Michelle Bishop:

Whether or not they’re a citizen?

Erika Hudson:

That is correct. Every single person in the United States is counted through our decennial census that happens every 10 years.

Justine ‘Justice’ Shorter:

Good to know.

Erika Hudson:

Right?

Justine ‘Justice’ Shorter:

Right.

Erika Hudson:

A lot of folks are familiar with what census data does, which is helps with apportionment of the seats in the U.S. House of Representatives and helps figure out how many representatives each state gets. That’s why we see California have a lot more than perhaps-

Michelle Bishop:

Wyoming.

Erika Hudson:

Yes.

Justine ‘Justice’ Shorter:

Or Vermont.

Erika Hudson:

Vermont. All these different States we can think of. That’s why census data is so important, and it changes every 10 years after we get our data. Did you all know that?

Michelle Bishop:

Apologies to the state of Wyoming.

Justine ‘Justice’ Shorter:

Well, this is important because also populations change–guess when–when disasters strike.

Erika Hudson:

Oh, I see what you did there.

Michelle Bishop:

Brought it full circle.

Justine ‘Justice’ Shorter:

I do those things.

Erika Hudson:

I love it. But also something that we’ve talked about is that census data helps determine how billions of dollars in federal funding gets distributed to states every year, and that all comes through census data.

Michelle Bishop:

So if you’re under counted, you’re underfunded.

Erika Hudson:

Exactly. And that’s why it’s so important to say, “Count me in!” as we approach 2020 Census and also so important for the disability community to say, “We count, and that we have a voice in our democracy.”

Michelle Bishop:

And probably also why we don’t use “winter is coming” as a catch phrase for the census because we actually need people to do it and not be afraid of it.

Justine ‘Justice’ Shorter:

That’s another Game of Thrones reference that I don’t get and…

Erika Hudson:

Was that Game of Thrones, though?

Michelle Bishop:

That is a Game of Thrones reference.

Erika Hudson:

Oh.

Michelle Bishop:

Justice said the census is coming at the beginning of the episode.

Justine ‘Justice’ Shorter:

Yeah, I just that off a movie theater’s thing.

Michelle Bishop:

Nobody else watches Game of Thrones?

Justine ‘Justice’ Shorter:

No, not very.

Michelle Bishop:

I’ll just sit over here.

Erika Hudson:

We’ll just continue on.

Michelle Bishop:

Yeah, please.

Erika Hudson:

That is why it’s so important. And something that I didn’t know until recently is that census data produces timely local data that is crucial for emergency planning. I did not do that until Justice, our fearless disaster preparedness and emergency preparedness, all things preparedness, disaster, told me.

Justine ‘Justice’ Shorter:

Yeah. No, it’s [crosstalk 00:04:37].

Michelle Bishop:

I thought you almost called her our fearless disaster leader, which sounds like something else entirely.

Justine ‘Justice’ Shorter:

No, it definitely sounds more scary. And I’m not too inclined to be associated with scary things because disasters are scary enough in and of themselves. They are very unpredictable. Things can be very chaotic, and sometimes you can feel as if you have no control because, despite what many of us want or sometimes what some folks believe, we can’t control the weather necessarily, but we can do things around climate change. And it’s totally different episode. But it’s-

Erika Hudson:

I like how you tied it in, though.

Justine ‘Justice’ Shorter:

Yeah, but there’s just so many different things to think about when it comes to this. And I think that’s why the census is so important because we’re trying to make sure that people are counted. This is really important in particular for the disability community who has historically been invisibilized. And so the census is all about making sure that people are seen, that they’re heard, that they’re counted, that they’re included so that more equitable decisions can be made in terms of who represents them in Congress and who and who makes decisions on their behalf, which of course can be connected to really big issues like healthcare, like their overall rights to vote, like their rights to participate in just a number of different daily freedoms that we’ve all come to enjoy on a day-to-day basis. That’s really central.

Erika Hudson:

Well, it’s a beautiful thing. Everyone has opportunity to say I’m here. I want to be here. I’m counted. That’s rare, I think, in today’s world that everyone is in fact included in this process. And that’s what the census does, and that’s why it’s in our constitution. That’s why they say every single person will be counted every 10 years.

Justine ‘Justice’ Shorter:

Good to know.

Erika Hudson:

Right?

Justine ‘Justice’ Shorter:

Well, we have some good stuff coming up today.

Michelle Bishop:

Yes. Today we’re going to be joined by Denice Ross, who’s a Fellow-in-Residence at Georgetown University where she works on issues related to disaster, census, climate change and many more issues. But today we’re going to be learning from her about the census and how it relates to emergency and disaster preparedness. Denice, come on down.

Denice Ross:

Hi there. I’m Denice Ross, and I’m a Senior Fellow with the National Conference on Citizenship and also a fellow with the Beck Center for Social Impact and Innovation at Georgetown University.

Erika Hudson:

Excellent. And Denice, thank you for being on the PandA Pod today. I was really excited to have you join us as I heard you speak at a conference that we were both at, I think, back in December of 2019. And you discussed the-

Michelle Bishop:

A month ago.

Erika Hudson:

It was last year. It was. Well, at a census meeting. And you mentioned how census data played a role in the relief of Hurricane Katrina, and that was the first time I put the pieces together, why census data is so important, not only for federal funding of the programs that I think we think of every day, but for disaster relief and emergency preparedness. So I would love for you to chat about why census data is so important for all of that.

Denice Ross:

Yes, thank you. And this is one of my favorite topics. It was really an honor to be on the podcast. So for a little background, I was in New Orleans. I moved there after Census 2000 was released, and there was this great opportunity to democratize these federal datas so that rather than being used by decision-makers behind closed doors to make decisions about communities, there was this possibility that the data might be easier for folks to access so that communities could use the data to advocate on behalf of their own destinies. And so that’s what I was doing before Katrina happened. Katrina happened in 2005. When Katrina flooded 80% of the city after the federal infrastructure failed, the data that the census had collected about the city became instantly historical. And so we were really flying blind in the recovery. It made me realize how much I’d been taking census data for granted. And so ever since then, I vowed I would never take census data for granted again.

Denice Ross:

And, of course, with the 2020 Census coming up, which the census day is April 1st, 2020, it’s really front and center in any advocacy community right now, making sure that everybody is counted for disaster preparedness. Every time you see that there’s a fire or a hurricane or an earthquake, there’s usually an area that’s impacted and some severity associated with that impact. But the way that we make meaning out of that is knowing who are the people. How many people are affected, and what are their demographics, and what’s the intersection of the disaster and the population? And that’s the role that census data plays. If you could indulge me, I’d love to give a little bit of an overview of the census data products as they relate to disasters and disabilities.

Justine ‘Justice’ Shorter:

That’d be great.

Denice Ross:

Okay. The first is the decennial count. And that’s just a really basic questionnaire. I think there’s only nine or ten questions, and that just covers sex, age, number of people in household, race or Hispanic origin, owner or renter. And that data is available. It’s really good data because it’s a count of all the people, and it’s available at the block level. So you get great geographic granularity, which is important for disasters because think about how a tornado works. It just can cut a swath just a few blocks wide, and we need data about the people who are impacted by that disaster at the small geographic area.

Denice Ross:

And because the decennial census by definition is every 10 years, the Census Bureau fills the gaps with these annual population estimates. And there they basically take the base number from the decennial count, add births, subtract deaths and then account for net migration of people moving in or out of the geographic area. But the really interesting data that we use for disasters and emergency planning is from the American Community Survey, and that’s a sample. And it gives you great information on access to a vehicle, what languages are spoken in the home, whether people have health insurance. It has specific questions about disabilities, including vision and hearing impairments, mental health and cognitive disabilities, mobility challenges, whether people can perform activities of daily living, do they need assistance for running errands and do they have a service-connected disability as a veteran, that type of thing.

Denice Ross:

And then lastly, the Census Bureau collaborates with HUD, the Housing and Urban Development agency, to conduct the American Housing Survey, which has great data on accessibility of the home for people with disabilities. And why that’s relevant is because the cost to rehab a home that was made accessible before a disaster, the cost to rehab it is going to be higher. So those are the four main data sets that the Census Bureau produces that are really essential for planning for emergencies and disasters.

Justine ‘Justice’ Shorter:

And let me just also pivot back once more to ask about disaster housing. You mentioned that a few moments ago, and it is the issue that I constantly come into contact with from one disaster to another. It does not matter where it is around the country or in the territories, the disaster, I constantly come into contact with this issue: the shortage of affordable, accessible, available housing. Can you just elaborate a little bit more about kind of the American Community Survey, the information that it collects around housing? You’ve mentioned here around whether or not a home was accessible and what that looks like but then also kind of thinking about that after a disaster and how much it costs to rehab a home and make it accessible. We see in the field often that the goal is to get a home to be back to its pre-disaster standard.

Justine ‘Justice’ Shorter:

And so the question or the concern that many disaster survivors with disabilities have is, “If my wooden steps were washed out and I could barely use my wooden steps if I have a mobility disability, then can we make some arrangements here so that I could have a ramp in place as opposed to just building the steps back? Can I get a wooden ramp as opposed to these wooden steps because it makes no sense to build it back to that pre-disaster standard if it wasn’t accessible to begin with?” But we can keep in alignment with this whole idea of building back better in a way that’s more conducive to communities and to individuals, so I just wanted you to expand a bit on that concept.

Denice Ross:

Yeah, there is a great opportunity here for evidence-based advocacy to change the policies. And so I think there would be sort of two avenues that I’d pursue, and one is this allowing to build back better. If your needs weren’t being met in the home that you were in, can you build back so that the home is accessible after the disaster? The second thing is just making sure that the maximum limits for housing support after a disaster, that people with disabilities who require accessibility modifications to their home have a higher limit so that they can replace the ramp and replace all of the accessibility they might’ve had inside the home.

Erika Hudson:

Denice, that’s great. Thank you so much for tying that all together. That’s really helpful and a lot of information that I did not know, and I really like how you said “build better”. And that’s something we can take away after disaster strikes. And I want to tie something back into what you said earlier in the podcast. You mentioned Hurricane Katrina, and I think in today’s day and age we see that more and more with different disasters going on, whether that’s Hurricane Maria or the wildfires in California. So I’m curious, what does the Census Bureau do after disaster strikes? And you tied in kind of why the data is so important. But during that rebuilding phase, I think of California and how so many people had to move out of that area following the fires. And I imagine those numbers are going to be vastly different now in 2020 than they were during the decennial in 2010. So I wonder if that has any impact, and I’m curious to see if you have any thoughts on that.

Denice Ross:

Disasters definitely impact data collection, and it’s tricky because it’s really a chicken and egg thing because in order to be in place and back in your home after a disaster, you need certain services. You need a complete community around you, but that complete community won’t be established until there’s a demonstrated need for those services. So I remember after Katrina, the most common response to these types of conundrums was it’s a chicken and egg problem. I can explain that a little bit by just describing how the Census Bureau handles when they go in and when they go into a post disaster situation. So the Bureau’s committed to counting every person in the United States only once but in the right place. And the way they define the right place is by what they call your usual residence, and that’s where you live and sleep most of the time.

Denice Ross:

People who are displaced by a disaster don’t have a usual residence that’s where it used to be. And so that’s tricky. They get counted wherever they are staying, whether it’s a shelter with a family member, which may be outside of the area where they were living before the disaster. So after Katrina, I evacuated to Phoenix, and I was there for six months because we didn’t have power. And so if the census count had happened at that time, my usual residence would have been Phoenix, Arizona. Now with that said, the Bureau, what they do after a disaster if there’s a decennial count coming up is this time around (for example, for Puerto Rico and Paradise, California and Mexico Beach, Florida) they’re leaving forms door-to-door. They’re also using iPhones to update addresses so that they know which buildings are gone, where did new buildings go up just to make sure they have a really good address file, and most importantly they’re checking nearby shelters, temporary housing and trailer parks.

Denice Ross:

But the trick there, of course, is that if the census counts are used to determine what services need to be put into place in a particular area, how many dialysis clinics do you need, what type of special education services do you need in your schools. If people can’t move back because those services aren’t in place, then they aren’t counted when it comes time to determine the need for those services.

Erika Hudson:

Right.

Justine ‘Justice’ Shorter:

Denice, I want to pick up on something that you said there. You mentioned power, and of course, our minds as individuals who work with people with disabilities go immediately to folks who are electricity dependent. Can you speak to us about another form of data collection around ensuring that individuals with disabilities have access to electricity? Can you talk to us about emPOWER and tell folks what that is?

Denice Ross:

Yes, absolutely. So when you’re talking about data and disasters and especially the intersection with disabilities, the data that’s provided by the census is population level data. So you can use that to figure out where should we send the evacuation buses and maybe how many wheelchair-accessible buses do we need, but you can’t use census data to knock on the door of somebody who needs help evacuating. It’s not individual level data. Now, what’s great about administrative data that the local or federal government might have or different nonprofit providers is that that has data about individuals and their needs.

Denice Ross:

And one really nice example of this is the emPOWER program out of the Department of Health and Human Services. It’s E-M power, emPOWER. And they have data from Medicare on people who are dependent on durable medical devices, so ventilators for example. And they had this fantastic map where you can look down to the zip code level at the counts of people who are dependent on durable medical equipment and would need assistance if there was a power outage. Now that’s not enough to rescue the individual. It’s enough to put in place resources to help that population. Where the really powerful connection comes in is that when a disaster is declared, HHS can share the individual level data with the local health department. And then the local health department can reach out to those people who need help when the power goes out.

Justine ‘Justice’ Shorter:

Yeah, it’s such a vital resource. I have been deployed to disasters where folks have used that data from emPOWER versus information that has come from other data collection sources, primarily because, as I asked in the beginning, kind of the rate of response amongst individuals with disabilities, perhaps those numbers were significantly lower or out of date and were not necessarily applicable to the situation at hand. And to your point, when one is trying to provide evidence-based advocacy, it’s difficult to do that when you are interacting with folks and you can clearly make the connection that there are people with disabilities here but the numbers don’t bear that out. And when you are in rooms trying to advocate for additional resource allocation and service delivery, it really does help to have a multitude of tools to have at your disposal to say people with disabilities are here and there are clear defined needs here.

Justine ‘Justice’ Shorter:

But then also bear in mind that people with disabilities, just as the general population does as well, move. They move around either because they’re displaced by a disaster or because it is their own desire just to move to a different neighborhood. So we have to just be aware that if you’re going to have a hundred or several hundred, several thousand folks in a particular area, you can bet that probably about 25% or so of those on average perhaps could have a disability or an access and functional need. So we have to be mindful of that when advocating to disaster leaders.

Denice Ross:

Absolutely. From my perspective, everybody working in emergency management should be a disability advocate, and every disability advocate should also be somewhat data savvy so that they can tell more effective stories and make the case. And knowing what data are available, both from the official statistical agencies like the Census Bureau and also administrative data sets that you or your local government might have access to.

Michelle Bishop:

I’m sorry, disaster professional should be disability advocates. That was just one more time for the cheap seats in the back.

Erika Hudson:

Yes.

Justine ‘Justice’ Shorter:

Also wanted to ask you another question here, Denice. Can you talk about the distinction between registries and the census and the American Community Survey? And I ask this because sometimes registries have been seen to be somewhat of a controversial issue to varying degrees depending on who you ask and kind of where in the country or in the territories you’re asking that question. But I want to bring this up specifically as it relates to linkages to certain marginalized populations that intersect with disability. For example, individuals who may be of immigrant status or perhaps do not have legal status here in the country but who also have critical needs and need specific assistance or perhaps services that are available to the public but are not making themselves known because they don’t to be on any particular list or they don’t want to have their names or information associated with any particular registry of some sort but then also individuals who have not had the best relationship or history with law enforcement.

Justine ‘Justice’ Shorter:

And I only bring up law enforcement because in some counties, especially small rural areas… And I’ve traveled all across the country and I’ve met with first responders who are fire and EMS folks but who also share their data and their information with law enforcement. And so that can sometimes serve as a deterrent for some communities who have not had the experience (I’m thinking black and brown communities in particular) with law enforcement and just don’t want their names on the list if they have a mental health consideration or additional concerns that they just don’t want people to know ahead of time. But could you just give us a bit more information on your thoughts as it relates to registries as well as the American Community Survey and the census when we talk about data and the assistance available to certain marginalized communities in particular?

Denice Ross:

I’m so glad you asked that because that’s really the frontier for the conversations that need to be happening. And first, just to be super explicit, the census is not a registry. So they collect individual data, but they only publish summaries of that data. So you cannot be individually identified. And the Census Bureau is prohibited by law from sharing any individual-level data with law enforcement or anyone else. Now that’s good. So they will not share it with the police department. They also will not share it with the fire department who might be coming to help you if the power goes out. That’s why it takes a full complement of data to really provide the type of supports that communities need when a disaster happens. So the census data, the population level data, can be really useful for general planning, but it will not help individuals.

Denice Ross:

Some cities do have something they call a special needs registry, where if you need additional assistance during emergencies, you can sign up for help. It’s really, really hard to make those complete or accurate because people move around. And I think there’s a good reason for concern about how alternative data might be used to help people with disabilities in emergency situations. So for example, your healthcare provider has information about you, nonprofits who are helping support with activities of daily living have information about you. How would you want that data used? And so there’s an important role right now for the disability community in terms of setting up governance in advance of disasters of how personal information that’s collected by state and local government or nonprofits might be used to help you and your community or how you don’t want it to be used.

Justine ‘Justice’ Shorter:

Mm-hmm. No, I think that’s a really great point. And often, again, special needs registries, it can be a controversial issue. There are some circumstances and folks that I’ve spoken to who swear by it and think that it’s wonderful, and others have seen it being used in practice directly after a disaster where hundreds, if not thousands, of people are on a registry and only about a dozen actually were assisted to evacuate afterwards, so kind of that false sense of reliance that because my name is on it I’ll definitely get help.

Justine ‘Justice’ Shorter:

But then also taking into account that people with disabilities live full, well-rounded lives for the most part. And so not everyone is always going to be at home. I think we kind of move away from this thought that people with disabilities are sequestered away in their homes and are not able to enjoy the community. We think about this in relation to community integration. So that means you could be at a mall, you could be at a concert, at the club, whatever the case might be, but you could be out enjoying life. And a disaster can happen at anytime. Now, we’re hoping you’re not partying in the middle of a hurricane, but-

Erika Hudson:

You know. But…

Justine ‘Justice’ Shorter:

But if there is some sort of situation where there is very little to no warning such as an earthquake or even a tornado that has very, very little warning and you kind of have to just a shelter in place wherever you are. That could be anywhere within your community. And so just knowing that whatever is put in place has to be flexible and fluid enough to fully comprehend and plan for all of those different variations.

Denice Ross:

Yes. And the time to do that planning is before the disaster [crosstalk 00:29:01] happens. That’s how you maintain your autonomy over your own data is by helping set up the governance in advance.

Erika Hudson:

Excellent. I have one more question that I would really like to talk about real quick as we’ve talked a lot about the use of census data and why it’s so important. But in the context of the 2020 Census, I think a lot of us hear about the federal funding that relies on accurate census data and why it’s so important for a fair and accurate count and then on top of that how it helps communities build. So in terms of disaster planning and disaster relief, could you tie all that in together for us in why participating in the 2020 Census is so important in this context both far disasters and just for our everyday life?

Denice Ross:

Yeah, and this comes down to the core purposes/roles that census data play in our democracy. The most important one is congressional apportionment and determining how many votes your state gets in the Electoral College. So just in order for your state to be represented at the national level, everybody needs to be counted. That’s absolutely essential. The second one is that voting districts, of course, are drawn based on census data. And so if populations are not counted in the decennial count, then their voting power will be diluted, so they won’t have the representation that they need. And then lastly is the distribution of federal funding. Many federal programs have their funding formulas based on census data. And so communities that are under counted are likely to receive fewer services, and that has a downward spiral in terms of quality of life and I’m tackling some of the intersectional challenges of poverty and disability and race and whatnot.

Erika Hudson:

Excellent. Thank you. And I saw a few days ago when I was doing some additional research how, and correct me if I’m wrong with this, they use census data to determine how many fire stations a town might need based on the population, whether they need more. Is that what your understanding is too of how potentially a community can see the direct impacts of census data?

Denice Ross:

Local governments use the small area census data all the time for that type of planning. So they use it for determining where fire stations are, police stations, hospitals, Starbucks, [crosstalk 00:31:55] childcare centers. And that was what was so tough after Katrina is we had no idea who was back, what they needed and what services we should put into place. How do we prioritize it? We were really flying blind after the storm.

Justine ‘Justice’ Shorter:

Yeah. I think it’s really important to emphasize that piece there where we’re talking about the money being associated with this because we can plan as much as we can, but if there are not financial resources associated with those plans, then they are just merely ideals and they’re aspirations. It’s purely aspirational, but it won’t be practical when something actually happens if we don’t have the resources in terms of personnel but also in terms of funding, the services, different collaborations in terms of partnerships with the community, so on and so forth. If we are not working to make all of those pieces come together, then the plans do not yield the same purpose that they ultimately had in the very beginning that we started out with initially. So it’s very important to make sure that those two things are connected and streamlined throughout the entire disaster cycle.

Justine ‘Justice’ Shorter:

And Denice, with that, I do also want to ask do you have any additional statements, anything that we have not gotten to thus far? I think Erika and I’ve gone through a ton of questions. with you. Is there anything else that you would like to say that we didn’t get to?

Denice Ross:

I think we covered everything. For me, the two things that I think are potentially most important is that people with disabilities are currently not well represented in the field of emergency management and that they need to be at the table before, during and after events to chart an equitable response and recovery. And an equitable recovery is better for everyone. Disaster recovery isn’t just one person at a time. It’s entire family units and communities that are part of the recovery. And if we don’t include everyone, then the recovery is going to be incomplete. And the second point is that the data landscape is changing rapidly with social media and just so many different administrative datasets that we are all in, all these databases. And now is a perfect time for the disability community to help start providing governance on how those data can and should be used to save lives and protect privacy.

Justine ‘Justice’ Shorter:

I love that. We talk about citizen participation all the time, and so I love that central focus on governance, that we need to have more individuals with disabilities governing the process, not just casually consulted here and there, but truly involved with the governing the process throughout. I love it, and I want to make sure that I keep that mentality with me as I continue on with the work that we’re doing here at the National Disability Rights Network. Ladies, do you have any final questions for Denice or comments?

Michelle Bishop:

Denice, I just wanted to say thank you. The census has always been really important to me because, as you mentioned, it is how we draw our voting districts, and elections are my jam. But I still think that prior to today I probably also was taking how important the census is for granted. You mentioned earlier if you’re not counted in the census, you’re invisible and being invisible is deadly, and I will never forget that. And I think this conversation proves in how many ways that is so true, so thank you.

Justine ‘Justice’ Shorter:

Absolutely. Often people with disabilities are invisibilized or erased from the conversation, and I think we actively tried to combat that in our work on a daily basis. So this conversation just emphasizes that even more.

Erika Hudson:

Yeah. And the fact that you said include everyone hits home to me as I think NDRN’s main effort in the census has been to count everyone but also include everyone as well as this is a collaborative effort to make sure that no one is invisible and that we all have an equal voice here.

Denice Ross:

Yes, absolutely. Yeah. And anything I can do to collaborate moving forward. This is super important work. And I’m so glad that you asked me to be on this podcast.

Erika Hudson:

Denice, Thank you so much. This was absolutely incredible and I-

Justine ‘Justice’ Shorter:

You’re wonderful.

Erika Hudson:

Yeah. As much as I’m focused on census, I had no idea about a lot of stuff that we just talked about, so thank you very much.

Justine ‘Justice’ Shorter:

Another huge highlight that you wanted us to point out is that registries are not the same as the census, people. Let’s be clear on that.

Erika Hudson:

Yes. Yep. Excellent. Well, thank you all for joining us on the PandA Pod today on our series.

Michelle Bishop:

I have terrible news.

Erika Hudson:

Oh, yes.

Michelle Bishop:

Next week is our last episode.

Justine ‘Justice’ Shorter:

Why would you end on such a Debbie downer note?

Michelle Bishop:

I know, sorry.

Justine ‘Justice’ Shorter:

Okay. Well, here’s the good news, though. The good news is that although next week will be the last episode of this series on Disability, Disaster and Democracy, it will only be the continuation, though, of the PandA Pod more widely because NDRN staff will continue to serve up phenomenal episodes and information and content about all things related to protecting the rights, the lives, the dignity of individuals with disabilities, and we’re super excited about that.

Erika Hudson:

All right. I feel better. Thank you, Justice.

Justine ‘Justice’ Shorter:

I’m here for you, girl.

Erika Hudson:

Thank you.

Michelle Bishop:

Tune in next week.

Justine ‘Justice’ Shorter:

All right. Have a good one.

Michelle Bishop:

Bye.

Subscribe to the PandA Pod now

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In this (mini?) episode the gang interviews Stephanie’s wife Quinn McEben about their work as a mental health care nurse, and how mental healthcare can better serve the disability community. Also we talk a lot about their wedding.

Full transcript available at: https://www.ndrn.org/resource/ndr-may24/

Jack Rosen:

Can we talk for a minute about how we got on some sort of press release mailing list, and now people keep pitching us on podcast ideas?

Michelle Bishop:

I mean I just think that means we’re winning.

Jack Rosen:

If you are the person who put us on that mailing list, please reach out to me. I don’t mind. I’m not upset by it. I just want to know how this happened.

Michelle Bishop:

And I would just like to tell that person, thank you for your confidence in our podcast. Our listener, my mom, is very excited.

Stephanie Flynt McEben:

Wait, did your mom put us on those press lists?

Michelle Bishop:

You know what? If she did, that would be hilarious. And I would have to say well-played mom.

Stephanie Flynt McEben:

Because they are identifying you, specifically. The rest of us are nobodies. You are [inaudible]

Michelle Bishop:

Not only is my mom our only listener, but she’s trolling me through our podcast. I don’t think that’s true. But if it is, diabolical and I respect it, so what can I say?

Stephanie Flynt McEben:

I like it.

Michelle Bishop:

Jack, should we actually start the episode? [music] Welcome back everyone to National Disability Radio. We are so excited to have you back this lovely, gorgeous May. Spring is here. I am Michelle Bishop. I am one-third of your podcast hosting team.

Stephanie Flynt McEben:

And I’m Stephanie Flynt McEben, another member of our podcast hosting team. We got in trouble for the one-thirds last time, so I think I’m, is it the one-fourths?

Michelle Bishop:

It’s the one-thirds. I’m still enforcing this. Wait, we’re going to give that name change in a second. Stephanie slipped a little name change in there. So that is two-thirds of your amazing hosting team and our final host, Raquel Rosa will join us later in the episode for the interview. And then of course, as always, our trusty producer.

Jack Rosen:

Thanks, Michelle! That one was actually pretty nice. I appreciate it.

Michelle Bishop:

I want to stress that Jack and I don’t actually hate each other. We just can’t let this go. [laughter]

Stephanie Flynt McEben:

Let it go, let it go [inaudible]

Michelle Bishop:

Oh, wait. Do we have the rights to Let It Go?

Jack Rosen:

You can only sing like three seconds of that before we get sued.

Michelle Bishop:

Yeah. Disney, don’t make Disney come for us.

Jack Rosen:

Yes, that goes against my, we can handle any lawsuit rule. Not Disney.

Michelle Bishop:

Not Disney.

Jack Rosen:

That’s with the mouse.

Michelle Bishop:

No Disney. No. We’ll lose that.

Stephanie Flynt McEben:

Release the mouse.

Michelle Bishop:

So to redirect you from your beautiful vocal styling, Stephanie, tell us about this month’s episode.

Stephanie Flynt McEben:

So yeah, my wife is going to actually be our featured speaker on this month’s episode. As many may be aware, May is a Mental Health Awareness Month. And so we are going to be talking about individuals with mental health, disabilities and diagnoses when it comes to getting the care that they need and advocating for the care that they need. So super excited about this and this episode, it’ll be great. And I may or may not be a little biased, but–

Michelle Bishop:

Towards your own wife?

Stephanie Flynt McEben:

Yeah, kind of.

Michelle Bishop:

I mean, I would expect that, but also before we get into interview, congratulations Stephanie on having a wifey!

Stephanie Flynt McEben:

Thank you! Nala was a flower dog.

Michelle Bishop:

Stop.

Stephanie Flynt McEben:

She was included.

Michelle Bishop:

Oh, my heart can’t handle that. We’re going to have to see pics.

Stephanie Flynt McEben:

I was going to say there’s definitely pictures.

Michelle Bishop:

After we finish this episode everyone has to stay on it. We have to see pictures of Nala, the service dog being in the wedding. But congrats on your wedding and that’s why Stephanie had a sneaky little name change that she put in there with her new last name. And let’s jump to the interview.

Jack Rosen:

But wait, wait, wait. But before we do that, Stephanie, do you want to tell us who your wife is and why she’s on the show?

Stephanie Flynt McEben:

Yeah, so my wife, Quinn McEben is a mental health care nurse who works with clients who have varying mental health disabilities and varying mental health diagnoses. And so she works with them regarding their general health, their mental health, working with them on advocating for the services and supports that they need in particular in the healthcare space. So they do some really good work and super excited to hear about their perspective regarding this space. It’s going to be great!

Michelle Bishop:

Thank you for agreeing to be on this month’s episode. So I guess we’ll just kind of get right into it. So as individuals who live with disabilities ourselves, I know that we know firsthand some of the trauma that we’ve experienced related to our disability. And so we would love to get a provider’s perspective on different experiences that you’ve kind of worked with, with individuals and how providers and just individuals who are advocates for individuals with disabilities. Just how can folks be supportive and what has your experience with this been during your career as a mental health care nurse?

Quinn McEben:

Yeah, so I can kind of talk about some good things and bad things. So like you mentioned, I am a psychiatric nurse. I manage a lot of physical healthcare for a caseload with people with severe and persistent mental illness. And so I see both of it and both the physical health and the mental health disabilities. And I will say from nursing school on, we weren’t ever, of course we covered psychiatric care, but as far as physical health disabilities, people with blindness or hearing impaired or deafness in wheelchairs, we never talked about any of that or how to address that in a different way.

And so one of the biggest things I see with my particular clients is that it’s just what I would call medical trauma, which I would just describe as providers not being great. And whether that’s one of the things I see a lot is they come to the doctor for a physical health reason, say it’s chronic pain, say it’s diabetes, say it’s high blood pressure while they see their other meds and they see that they’re also diagnosed with schizophrenia, they’re also diagnosed with depression.

And suddenly that chronic pain is all related to the depression.Suddenly that diabetes doesn’t matter and we shouldn’t treat it because it’s just from the meds for schizophrenia. And so people focus in on the mental health side of it and is the somatic providers don’t necessarily focus in on other things. And so what happens then is those same clients don’t want to seek physical healthcare. And so I think the same thing happens in the mental health world, but I think the mental health world is better about just because we see a lot of clients with varying communication levels and just varying ways of looking at the world, which is I think a beautiful thing. But I think we’re kind of better about that. But as far as the physical healthcare, I think there’s a long ways to go. So a lot of my clients and a lot of my job really is advocating for clients and teaching them to advocate for themselves because whether it’s a physical health disability that’s visible or invisible, they get dismissed a lot because of any mental health concerns.

Stephanie Flynt McEben:

That is some super helpful information. Thank you so much for sharing that! I know that yesterday you and I were actually talking, specifically yesterday, about just general instances of when individuals, for example, who have mental health diagnoses or mental health disabilities,

Have not been believed by whether it be healthcare providers or whether it be just in different situations because of their disability. Could you talk a little bit more about that and what that’s looked like and how you’ve been able to help folks work through that, whether that be directly or indirectly through your job?

Quinn McEben:

Sure. So I think that looks like I was mentioning going to the doctor for chronic pain. And so something as severe as stomach cancer, right? And so imagine this, you have a client that is having stomach aches. It’s having a stomach ache, it’s getting worse, it’s getting worse, and they keep going to the doctor, but the doctor won’t do imaging because they’re like, oh, it’s stress, it’s anxiety. But they won’t do imaging. They won’t do any follow-up tests and when someone finally believes them it’s cancer that’s advanced to a stage that we can’t treat it. And these are kind of the stories that I unfortunately have seen that’s like I said, a generic example, but I have seen things that are that traumatic. And so things that I recommend to my clients are getting other, they can advocate for themselves and we teach those skills. But if the providers still aren’t believing them, because unfortunately there are some good providers and there are some providers that I think provide competent care that are discriminatory.

So you can switch providers or sometimes if someone else steps in, whether it’s a family member or another professional like myself where there’s a lot of support staff that talks to the physician and is like, “Hey, can we maybe think about running this tests?” And then just getting that outside advocacy, teaching those advocacy skills for the patient and then teaching them how to reach out to other people if they need. Again, it’s really sad that we mean that, but thankfully there are people in positions that are able to help. And then ultimately, if you have a provider that’s not believing you, you need a new provider. And not that we shouldn’t trust our healthcare providers, but I think that there is sometimes a mentality of that healthcare providers know best and we are humans, too. And so it’s about finding the right fit for you. And that healthcare provider might be great for someone who is able-bodied and doesn’t have any mental illness, but they might not be a good fit for someone who is diagnosed with mental illness.

Raquel Rosa:

Quinn, you were talking about self-advocacy resources, and I’m wondering if you could talk a little bit more about what that looks like and what plain language resources look like?

Quinn McEben:

So in my role, it depends on the client. We do it on an individual basis. And so some people are more familiar with different health terms and some aren’t. We have clients in my role that don’t have reading skills, and so we teach them whether they can still search on their phone for YouTube videos and they can hear how to describe their own conditions and they record before they go into the physician, this is what I want to say. And so we role play, what do you want to do when you say get into the physician. Because I think, I know I get nervous when I go into my physician of what am I going to talk about, especially if it’s a new provider. And so role play of what that looks like. And I think plain language I think can look different for different people because it really depends. And so in my role, I fortunately have the access to or the ability to talk to people where they’re at. And so it can look different for different people.

Raquel Rosa:

I really like that. I like that there’s a customized approach. And I think that also touches on trauma-informed approaches because I think people respond better when they feel seen and they feel like their needs are being focused on. So I think that’s really an excellent practice that you’re sharing with us. Thank you.

Quinn McEben:

Yeah, absolutely. And I think that that’s a lot of mental illness and even physical illness in a way is physical disabilities is rather than just a blanket approach of, okay, this person is a blind person and I met this blind person three years ago and that’s what they wanted. And so I’m sure this new blind person wants the same thing that people are individuals and they need their own individual things.

Raquel Rosa:

Right, yeah. I mean we’re all different people with different needs and to your point of even time, if you met somebody three years ago, it does not mean that those needs are going to be the same. So I think it really takes a lot of humility and relationship building and continuity of relationship to make sure that we’re addressing people’s needs in a thoughtful and powerful way.

Stephanie Flynt McEben:

Yeah, absolutely. Definitely, definitely would retweet. I don’t even know if that’s still a thing anymore. I like the idea of going about it and ensuring that we are approaching where individuals with disabilities are when it comes to the healthcare space because for a lot of individuals, and I will throw myself under the bus here, there are lots of times when I won’t go to doctor’s offices to get certain things checked out because I’ve not been believed before. And so that’s something that I definitely struggle with and definitely can relate to. So Quinn, yeah, thank you so much for sharing today about the things that you guys are doing in order to help individuals to continue to go forward with these types of things, despite the experiences that they may have had prior to that they’re worried are going to be repeated. So yeah, thank you so, so much for talking with us today about this.

Quinn McEben:

Absolutely! And from the healthcare provider side of it, when I’m talking to other healthcare providers who don’t have the privilege of those long-standing relationships like I have with my clients, I always just encourage them to ask the client what they mean. If you’re doing one MRI with this one client, just ask them because the client is going to know what they mean best.

Michelle Bishop:

Well, that was awesome and thanks so much to Quinn for bringing all their expertise to this episode. And also we said it to Stephanie earlier, so I’ll say it to you now, Quinn, congrats on your wedding as well and having your new amazing social justice warrior wife Stephanie, as well as congratulations to all the service dogs involved in the joining of this family. Okay, Stephanie, it’s that time. Do you have a joke for us this month?

Stephanie Flynt McEben:

Yes and no. It’s more of a story.

Michelle Bishop:

There is more of a story these days. These jokes get more and more elaborate. And I got to say, I respect it, Stephanie.

Stephanie Flynt McEben:

Oh, thank you, thank you! Thank you. So it’s one of those fun stories. So I don’t know if anybody’s ever told y’all, but, and apparently I’m really new to, clearly I’m new to the party. But all that to be said, individuals told me leading up to the day that something was going to go wrong, something was going to go wrong, something was going to go wrong. And yeah, my ring actually got dropped between the cracks of the gazebo, but don’t worry, it was recovered by ninja skills.

[“Here Comes the Bride” plays in background]

What really went wrong was we were on our way to our reception dinner and I was going down some Baltimore city steps and they were very uneven. One was two inches down and one was four inches down. I’m wearing three-inch heels. You add two, three and four to that and you get a broken ankle. So I quite literally fell for Quinn on my wedding day. And that joke is attributed to Quinn because Quinn is the one who came up with it and now I won’t stop using it and now they’re very annoyed with me. Fine, we’re all fine. And I literally looked up and I was like, well, I guess that’s the one thing that went wrong. And then I found out about the ring in the gazebo. So it was a good day y’all. It really was. I got to marry the love of my life.

Michelle Bishop:

You got married in a ’90s sitcom. They always had the episode with a wedding where everything goes wrong.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

And Raquel’s not here. Raquel’s name is to live in a ’90s sitcom. Oh, okay. We might have to revisit this next month, but also shout out to you and Quinn for already acting like an old married couple and irritating each other by stealing each other’s jokes.

Stephanie Flynt McEben:

I love that.

Michelle Bishop:

[laughter] No, seriously, congrats to everyone involved. That’s another amazing episode in the books. And Jack, do you want to tell the people where they can follow us on social media?

Jack Rosen:

You can follow us on Twitter, LinkedIn, Facebook, Instagram, and now Threads. And you can always email us at podcast@NDRN.org. Until next time folks.

Stephanie Flynt McEben

Bye. [music]

The National Disability Rights Network (NDRN) is excited to introduce the first-ever episode of the PandA Pod, a brand new podcast. The podcast name, PandA Pod, was inspired by the Protection and Advocacy (P&A) System – P&A…or P and A…as panda, get it? Just like NDRN, the PandA Pod content is all about P&As and provides useful and entertaining training and technical assistance to P&As and our allies in an all-new format. Keep coming back to the PandA Pod for a range of disability rights related topics from some of your favorite NDRN staff and our special guests all year long.

PandA Pod kicks off with a three-part series called Disaster, Disability & Democracy! This series focuses on voting rights and census participation of people with disabilities, and how these areas of democracy relate to disasters and emergencies.

During the inaugural episode, entitled Power at the Polls: Voting Rights When Disasters Strikes, NDRN chats with Mary Ciccone of Disability Rights New Jersey who explains the state’s efforts to get ballots to all voters immediately following Super Storm Sandy, with some important lessons learned. Following Mary’s interview, we check in with Neal Kelley of Orange County Elections in California about elections under the threat of wildfires, and some best practices for advance preparation.

Transcript

Michelle Bishop:

All right y’all, are we ready?

Erika Hudson:

Yes.

Justine “Justice” Shorter:

I think we are.

Michelle Bishop:

Here we go. Let’s do it.

Justine “Justice” Shorter:

Hey….

Michelle Bishop:

Welcome fearless listeners. Today is the first-ever broadcast from PandA Pod.

Justine “Justice” Shorter:

Hey now!

Michelle Bishop:

If you haven’t heard, PandA Pod is NDRN’s brand new podcast channel designed to deliver training, technical assistance, useful and most importantly entertaining content to the P&As and our allies in an all-new format. Keep coming back to PandA Pod for podcast series on any range of disability rights topics from some of your favorite NDRN staff.

Justine “Justice” Shorter:

That would be us.

Michelle Bishop:

And our special guest all year long.

Erika Hudson:

If you’ve tuned in today you’re just in time for our first episode series of Disability, Disaster & Democracy. Where we’re going to be talking about elections and census data and how it all relates to emergency preparedness and disaster planning. But without further ado, let’s introduce our host for the PandA Pod, Justice.

Justine “Justice” Shorter:

Hi everyone. It is I, Justine “Justice” Shorter. I am the Disaster Protection Advisor here at NDRN and I am absolutely thrilled to be joined here today by my two spectacular co-hosts.

Justine “Justice” Shorter:

But let me… And we’ll go into a little bit more, more about the series, but before we do, let’s go ahead and kick it over to Michelle.

Michelle Bishop:

Hey, this is Michelle Bishop, you may know me as your Voting Rights Specialist here at NDRN and I can’t pass up this opportunity to also give a shout out to PAVA #IRL, my video blog, check it out.

Michelle Bishop:

And now let me introduce Erika, Queen of the Pun.

Erika Hudson:

That’s an honor and a privilege to have that name, but my name is Erika Hudson. I’m a Public Policy Analyst here at NDRN and my main focus is Census 2020 that is quickly approaching and I also have the opportunity to work with the rest of our public policy team here at NDRN on various sorts of topics. But so excited to be with you all today and excited for this first series to get started.

Justine “Justice” Shorter:

Yes, it’s going to be a really phenomenal one. Talking about disasters, emergencies, humanitarian crises. It’s going to be great.

Erika Hudson:

Yes, I’m excited.

Justine “Justice” Shorter:

These are difficult topics, but they are worth us having the conversation about it. People are approaching these topics from such unique and innovative ways. It’s really a wonder to the whole, just the great ways that people are trying to protect the rights of people with disabilities and advocate for folks out there on the front lines. It’s amazing.

Erika Hudson:

It’s probably time to talk about it. I mean, 2020 not a small year I would say.

Justine “Justice” Shorter:

No, it is a big year. I would say we would go so far as to say big.

Michelle Bishop:

Maybe they’ll be a little election.

Justine “Justice” Shorter:

Something happening down in November.

Michelle Bishop:

There might be an election.

Erika Hudson:

And of course census year as well.

Justine “Justice” Shorter:

We called the big ‘C’.

Erika Hudson:

Do we? Do we?

Michelle Bishop:

I’m not sure that anyone calls it that.

Justine “Justice” Shorter:

I think we should. Coining new phrases.

Michelle Bishop:

You heard it here first on PandA Pod.

Erika Hudson:

The big ‘C’.

Justine “Justice” Shorter:

It’s so important though, because the election is happening on the heels of hurricane season, which ends in November, but it’s also so important to make sure that everyone is counted, including folks with disabilities and it’s so central when we think about disaster funding, disaster assistance, and that’s a lot of what this series is about. We’re really trying to get at issues at the intersection of disability disaster in democracy. That’s the whole theme of this three-part series that we’ll be doing here over the next few weeks.

Michelle Bishop:

Before we actually get into today’s topic, since I noticed you called November the heels of hurricane season, I’m from New York, we don’t call it that. We call it Midwinter where I am from. So either way it’s less than ideal time I suppose for an election and we don’t know who’s listening today and where they’re from and I would imagine a lot of folks when they think disaster, they think of the States that are typically impacted by hurricanes. But this matters everywhere.

Justine “Justice” Shorter:

It absolutely does. So we think about this and some of the most frequently hit states. You think about this in some of your Gulf Coast states. You think about this in terms of the wildfires in California. But yes, as Michelle mentioned, obviously disasters can happen anywhere in the country, right? And you have typhoons that are taking place in the Pacific islands and you have all types of flooding that occurs on a just anytime of the year. Flooding can happen anytime. Also, home fires, there’s all types of emergencies that happen, both natural and manmade that happened that could keep people away from the polls due to displacement or any other number of reasons. And so it’s important for us to just sit down and have the conversation and just look at the myriad of ways that people are impacted by these issues. And let’s figure out what we can do as advocates, as attorneys, as people who care and take it from there.

Erika Hudson:

And that’s why our census data is so important, so we know where people are at all times and whether that’s to prepare for disasters or emergencies or after to see how different communities change over time, especially if they were impacted by any type of disaster that you just said.

Michelle Bishop:

So correct me if I’m wrong, you were referring to data from the big ‘C’?

Erika Hudson:

Yes, the big C. We’ll talk about on our second episode of this series.

Michelle Bishop:

Justice, tell us about today’s episode.

Justine “Justice” Shorter:

Today’s episode we’re going to kick it off with an episode about voting rights after disasters. So we’ll be hearing from representatives from Disability Rights New Jersey. They’ll be talking to us about a lot of the phenomenal work that they did after Super Storm Sandy in 2012. And then we’re going to kick it over to Orange County and they’ll be talking to us about some of the innovative things that they are doing to ensure that individuals with disabilities have equitable access to elections following disaster. So they are exciting and engaging, captivating conversations. We do hope that you guys will stay with us throughout. Mary, from disability rights New Jersey. Kicks us off, Mary.

Mary Ciccone:

My name is Mary Ciccone. I’m the director of policy. I’ve been with Disability Rights New Jersey and its prior name, New Jersey Protection and Advocacy since 1998.

Justine “Justice” Shorter:

Awesome. So I initially met you Mary, at the NDRN 2019 Annual Conference and you were attending a round table that was on voting and you mentioned that this concept of voting rights after disaster, so that is where I personally would love to start. Why did you bring up that question and can you talk to us about the importance of voting rights after disasters?

Mary Ciccone:

I brought it up because it’s an experience that here in New Jersey we experienced firsthand and nonetheless as people are now experiencing wildfires in California, hurricanes in Texas and Florida and disasters all over the country. It’s something that I think people need to be prepared for. In 2012, it was a week before the election and we were hit by hurricane Sandy. The problem with hurricane Sandy was it hit the shore pretty hard. A lot of buildings were destroyed, and flooding, and surge and all of that, but throughout the whole state, power was out for weeks throughout the whole state. So, even if you didn’t get the full effect of the storm, the residual effects continued on for several weeks. And because it was a presidential election year 2012 it was one week before the election, we were scrambling. The division of elections was scrambling. The local County officials were scrambling to try to figure out how they were going to hold a presidential election one week after this natural disaster. So it’s something that I think people need to be prepared for because you just never know when disaster is going to strike. And I say it hit the entire state. So it was something that it wasn’t just one little small area, it was statewide.

Michelle Bishop:

and good thing. It was just a minor election.

Mary Ciccone:

Yes. It could have been anywhere worse, so it was a presidential election which has the most people voting and it was a big deal. That was the biggest problem. And basically we were flying by the seat of our pants. The director of the divisional elections and the secretary of state were just every day throwing out emergency rulings to deter on who could vote, where people could vote, all kinds of other stuff. People were just trying to throw up ideas of how we could get people to vote in as many, even though they weren’t living where they normally live, they were displaced, I mean it was a problem.

Michelle Bishop:

So you talked about this a little bit, the power outages, buildings being destroyed and I think a lot of our listeners aren’t going to remember exactly how devastating Super storm Sandy was. How badly did that shake up the traditional model of polling place voting?

Mary Ciccone:

There were certain counties like Ocean County where many polling places just weren’t available, period. They either had no power or their polling place was damaged beyond repair, or at least in time for the election. So they either had to find new polling places, they had to try to find places that people could get to. Because you got to remember not only were polling places not available, certain roads were impassable. There were trees down everywhere. It was a problem. And even in other counties, as I say, the problem was statewide because power was out. So a lot of polling places just couldn’t be used because there was no power. So the voting equipment couldn’t be used in those locations. So there was suddenly they had to try to change election locations. The state rules regarding vote by mail people were like, “well, maybe I can do vote by mail.”

Mary Ciccone:

The problem is vote by mail in New Jersey, you have to request that vote by mail ballot by mail one week before the election. And if not, then you have to go in person. Well, if you had had to move out of the state, which a lot of people did because they had no home, they had no power, many people were displaced across the entire state, it wasn’t easy to get back to your County board of elections to get that vote by mail ballot. So there were all kinds of issues and they say displacement of people was one of the biggest problems because they say if your home was destroyed, people evacuated all up and down the shore and they weren’t allowed to return home. So there was no coming home. So they were evacuated and then they were gone, for many months. And when you consider there was election one week later that created all kinds of problems.

Mary Ciccone:

If it had been a month before the election, it wouldn’t have been such a problem, but it literally was one week and they say the opportunity to vote by mail, that was ending when if you wanted to request that vote by mail ballot, by mail, you had to do that one week before the election.

Michelle Bishop:

I’m wondering what are your top three lessons learned from this experience? If you had three main takeaways that you want our audience to remember today to help them prepare wherever they are, what would those be?

Mary Ciccone:

First of all, I think one of the big lessons is it can happen anywhere. You don’t think it can happen to you. I grew up in Ohio and so our biggest fear was always tornadoes. But if you know anything about a tornado, it’s only going to hit a real small area. Even if it’s a really bad tornado, it might wipe out a town, but it’s not going to affect the whole state. But coming out to New Jersey, I’m like, Oh hurricanes, they don’t really hit New Jersey, they hit the South. We don’t really get hurricanes. Well we got hurricanes two years in a row. We got Irene 2011, flooded big chunks of the whole state. And then literally the next year we got Sandy, which devastated the whole state as they say, knocked out power, displaced lots of people throughout the whole state and devastated the shore area.

Mary Ciccone:

So it can happen and it can happen anywhere and you need to be prepared. One, you need to think through what happens if all the power goes out in the state. Voting is dependent on power. You need lights for people to see to go in to vote. Voting machines are electronic equipment, they don’t run on, do they have batteries? Do they have battery backup? They’re not going to operate if there’s no power. And if people are displaced, if something happens where they all have to be evacuated for whatever reason people are not going to be where they’re supposed to be. And if this all happens right around an election, it becomes a major problem. So it’s something that you have to realize that it can happen anywhere and you don’t know when a natural disaster you might hit, but it can and again happen literally anywhere in this country.

Mary Ciccone:

So everybody needs to think in terms of where, what happens if there’s no power and what happens if people are displaced. Because those are the two biggest issues. As I say, most polling places were not destroyed. Most polling places were, the buildings were fine, but they had no power and people moved away or evacuated because they had no power or they were told to evacuate and couldn’t get back home. Those are the issues that remains. So be prepared. I think the other thing is have a good relationship with your division, the person heading the division of elections for the state have a good relationship with all the other partners that we have. Your league of women voters, your ACLU. They may not be as concerned about disability voting, but there everybody has a concern about voting.

Mary Ciccone:

So by having regular meetings, we’re very lucky. We have these regular meetings before every election and in a presidential election year we usually have a couple more to discuss these issues, so we address them before there’s a problem. And the director of the division of elections, I have his address, phone number, he answers me whenever I have a question. So we have a really good working relationship.

Mary Ciccone:

I know other States that may not be the case, but by talking to him regularly he understands now, after I’ve been doing this for however many years I’ve been doing voting and I’ve been dealing with him, he understands accessibility, he understands the need to make sure that people with disabilities have the same access to voting that everybody else does. And if I have an issue, he tries to address it before there’s a problem. So I think having a good relationship with these other partners has really helped. And I say when this happened, he got on the phone and they were very transparent about what they were doing and they wanted our help to get out to our constituents to let people know what was going to happen. So we worked together on that issue.

Mary Ciccone:

Basically those are my two big issues. And three, when emergency does strike throw out any ideas. Some may work, some may not, but when there’s an emergency situation people want to vote. So how are you going to get as many people voting as possible? And I say some of the ideas worked, some of the ideas did not, but people were still trying ideas because it’s something that when push came to shove, everybody in our group had the same goal was to get as many people to vote as possible. So we all worked towards that one purpose and when things didn’t work, we were like, okay. That’s not working. Let’s try something else. But it’s better to work through those ideas beforehand so you can actually think them through, but sometimes that doesn’t happen.

Justine “Justice” Shorter:

Mary, I just want to tease out something that you said. Voting depends on power. Not just the electricity but also the electric, the power of the people and I think you drove that home as well as the power of these collective organizations coming together to protect the rights of individuals to vote. And specifically we’re thinking about this in terms of the protection and advocacy agencies who do such stellar work across the country and then the territories is to protect the voting rights of individuals with disabilities. So we sincerely appreciate you bringing that point home here as we prepare to close out. But before we do, we want to ask, is there anything else that you perhaps would like to mention or say that we perhaps didn’t ask you already?

Mary Ciccone:

I remember, just the idea that, Oh my gosh, how are we going to get people to vote when everybody is out of state or out of their district or wherever. And it’s like, what, how are we going to count the votes? How are we going to handle it? I mean, it was just this big fear that the election was going to fall apart and it didn’t. And people did get to vote. But that was because of the collective effort by everybody to make sure that everybody had the right to vote. And I think that’s probably the biggest thing, but it sure would have been nicer if we’d planned for it ahead of time. I think things would have worked a little bit better.

Michelle Bishop:

Mary, I’m sorry it took us eight years to interview you.

Michelle Bishop:

We just got a podcast.

Justine “Justice” Shorter:

Yes, we’re working on this.

Mary Ciccone:

Yes, I know. It’s going to be a busy year. Thank you.

Michelle Bishop:

That was amazing, Mary. Thank you so much. I think your experience is being caught completely off guard, and having to run an election immediately after a storm, that I don’t think anyone thought was going to reach all the way to New York and New Jersey. That’s got to resonate with a lot of our listeners.

Justine “Justice” Shorter:

I think that happens so often. No one thinks it will happen to them until it happens to them. Right? And so making sure that we are prepared as much as possible, but still being fully cognizant that things do not always go as planned. And so having those relationships with people and just being ready to get in there and do the work on the ground, make the connections, identify the problems and figure out very quickly what possible solutions exist can really get us many steps further in the process. And I think that’s a lot of what Mary hit on during our conversation and this is what many advocates have echoed all across the country when it comes to these issues so we’re super excited that she highlighted those for us today.

Justine “Justice” Shorter:

And now we have another great conversation.

Michelle Bishop:

We do. This is a great way to shift gears because our next guest is Neal Kelley, who’s with Orange County elections and Orange County actually spends a lot of time preparing and thinking about how they’re going to ensure access to the ballot during or after disaster so that they won’t be caught off guard. Neal, thank you so much for joining us today. Please tell us about you.

Neal Kelley:

Absolutely. Neal Kelley. I’m the Registrar of Voters for the chief elections official for Orange County, California.

Justine “Justice” Shorter:

Fantastic. And I think Michelle will kick us off with a question or two.

Michelle Bishop:

Absolutely. Neal, how long have you been running elections in Orange County, California?

Neal Kelley:

I am coming up on my 16th year of doing this, which is a little unusual because in California, the average tenure is about five years for this position.

Michelle Bishop:

So a lot of your voters are actually voting by mail. How-

Neal Kelley:

They are. Yes.

Michelle Bishop:

How are they typically receiving an actual postal mail paper ballot? And if so, how do you prepare for disaster when they may not be home or their home may not be there anymore?

Neal Kelley:

Right. So we have a little over a million voters that were voting by mail before this transition to vote centers. Now 1.7 million roughly, voters will all get a paper ballot in the mail. But we’ve also put in new for 2020 a remote vote by mail accessible system. So voters with disabilities or voters that are displaced could easily go online, download their ballot, mark it online, and print it out in any location around the world. So we’re prepared for that. And really, the primary function of that is to provide services for voters with disabilities that might not be able to make it to a vote center, but it has this byproduct of being able to service voters in a disaster or service military voters overseas. So there’s kind of a catchall as well.

Justine “Justice” Shorter:

That’s what we refer to as the beauty of universal design. And kind of having program that are not just in terms of physical access, but also programmatic access, communication access, but building things in a way that’s going to be universally accessible to everyone, not just individuals with disabilities. Neal, a quick question for you. Talk to us a little bit about your engagement with the disability community, this is often the first recommendation that we hear when folks talk about making things more accessible and trying to enhance equity for the disability population, so can you talk to me about the process of engaging with the disability community to make some of these changes that you’ve referenced this far?

Neal Kelley:

I can’t tell you enough how much I appreciate the disability community here in orange County because they’re engaged and we have a number of representatives on our large community advisory board, which is made up of 25 individuals throughout the County. Many of them voters with disabilities, and I can tell you that they have been instrumental in the acquisition of our new voting system in the way that we are providing services to voters with disabilities. And just a quick example. For instance, we have a subcommittee of that group that really educated us on open captions and how we’re doing video education and using open captions versus closed captioning. So they’ve just been instrumental in the whole operation. From top to bottom.

Michelle Bishop:

You talked a little bit about how you prepare for a disaster when you’re thinking about running elections, what sort of partners are you bringing to the table? Even just beyond the disability community.

Neal Kelley:

We a have a law enforcement fusion center here in Orange County that we work very closely with. We partner very closely with Homeland Security and the FBI. We also partner with our local fire authority. And so all of these folks are at the table and having these discussions on how would we respond. We participate in tabletop exercises for instance, with our local fire authority and local law enforcement and that keeps this issue top of mind. We also go through risk assessments internally and then bring in these other outside agencies as necessary to help us with those risk assessments and to provide other perspectives. So it’s kind of broad in terms of what we do here in Orange County and the people that we engage. I’m also fortunate because Orange County is the only County in California that has its own law enforcement fusion center for the entire County. Even LA County doesn’t have that. So, I’m lucky that we have these resources available.

Justine “Justice” Shorter:

Neal, I also wanted to ask you a question here. If you could, you said that you had been doing a lot of planning and things that have been specifically related to preparation for 2020 elections, started here in March. Let’s just dream here a bit. What would you envision the voting process looking like in the next four or so years? You’ve already been doing the work for 16 years. I totally imagine you’re doing it for another 16 you seem to love it, but I wonder, if you could project out for the next four years or so, what would you envision by way of advancements and if you could kind of build a better process as you go, even if the technology doesn’t have space for it now, but perhaps we could just project out and dream for the future. What would that look like for you?

Neal Kelley:

This is really a sea change for Orange County voters for what we’re going through now in this transition, and to me election administrators for so long have been in a bubble and focused mainly on the process of administration and not the voter experience. And I’m trying to take this to a different level to be able to provide a very different valuable experience for voters where there’s more access, there’s more time, it’s an easier process with less barriers and that’s what I’m focused on with this transition we’re making now.

Neal Kelley:

All I can see between now and the next four years is this ability with increased access and ease of use in the system. And I think we’re headed in the right direction. I’m not sure how much your listeners might be familiar with the voting system guidelines and that process of enhancing development of new systems, and I’m very involved in that process, so I see new technology the next four or five, six years coming down the road that can make it even more accessible for voters. So we’ll continue to look at that and we’ll continue to implement those things here in Orange County. There’s no question.

Justine “Justice” Shorter:

A point of clarification, Neal, am I hearing you say that you would like for us to have more accessible means of voting by a hoverboard? Is that where we’re going for the next 10 years or so Neal? That’s just to speak kind of clear for the listeners here, no, I’m joking.

Neal Kelley:

Yes, of course. I mean that’s a great comment. I think the thing that I just wanted to add though is that, this is a probably a horrible analogy, but I think of the Starbucks of voting in that it has to be an easy process that is not a burden or a hassle. And I think there’ve been so many laws and so many regulations that have surrounded elections that creates those barriers, unintended in many cases. But we don’t think about the voters enough and that’s what I’m trying to do and make those changes.

Michelle Bishop:

I need them to get my name right on the Starbucks. But other than that, yes. Absolutely. And I agree. I think there’s so much technology on the horizon right now that’s going to change so much about how we access the vote in general, and I can’t imagine how invaluable some of that’s going to be when we think about elections under less than ideal circumstances. So that’s fascinating.

Neal Kelley:

Yes. And one thing I think we need to keep in mind is that the more that we enhance security, the more potential there is for decreasing access, and then those unintended consequences. So certainly we need to keep that in mind.

Michelle Bishop:

Absolutely. The voter experience for sure. And voters are diverse.

Neal Kelley:

I would encourage if there’s other election officials listening or just people in other jurisdictions is that focus on that disaster recovery plan. Take the time to sit down and think about the risks that you face and how would you deploy following a natural disaster or even an unnatural disaster because we have an obligation to the voters to make sure that there’s accessibility across the board. So even though there’s limited resources, you can sit down and take the time to go through those risk assessments, and that’s important.

Justine “Justice” Shorter:

Ladies, any additional questions for Neal?

Michelle Bishop

The only thing I could add to what Neal’s just said is that I think that any elections officials who are listening are much more powerful than they’ve ever imagined. Elections officials make such important decisions and they set the tone and voting system, manufacturers and vendors, they design what they can sell to you and if you are innovators and you push change then we’re going to see better and better solutions for security and accessibility and flexibility going into the future. So yes, absolutely.

Erika Hudson:

Maybe even hover boards.

Justine “Justice” Shorter:

Very important, very important.

Justine “Justice” Shorter:

Neal, It has been an absolute pleasure and this has been a wonderful, wonderful interview. Thank you. Thank you so much for taking the time.

Neal Kelley:

Awesome. Thanks so much.

Justine “Justice” Shorter:

Wonderful. But ladies, I do have news. We are already at the end of our very first episode of the PandA Pod. We want to thank you all so much for taking this journey with us and we do hope that you will continue on. We have so much other wonderful content in the store.

Michelle Bishop:

We crushed it today though.

Justine “Justice” Shorter:

We have much, much more to share. So we hope that you will join us. I once again am Justice Shorter, Disaster Protection Advisor here at NDRN.

Michelle Bishop:

Michelle Bishop, Voting Rights Specialist at NDRN.

Erika Hudson:

Erika Hudson, Public Policy Analyst with NDRN.

Michelle Bishop:

Specialist in the big ‘C’ census.

Justine “Justice” Shorter:

That’s the next one. And that’s our very next episode. Erika, tell us a little bit about the next episode. What’s coming up next year?

Erika Hudson:

Like you said, the big ‘C’ census 2020 is fast approaching. It’s a big year, not only with elections, but with the census that only happens every 10 years. So on our next episode, we’ll be talking about how census data impacts disaster and emergency preparedness and what it all is about.

Justine “Justice” Shorter:

And the funding attached to it.

Erika Hudson:

They’re funding lot of money going in there. So hello, that’s what I’m saying.

Erika Hudson:

Thank you all for tuning into our first episode of the PandA Pod in our first series of Disaster, Disability & Democracy.

Justine “Justice” Shorter:

It’s been a pleasure guys. Have a good one.

Michelle Bishop:

Hear you next week.

Justine “Justice” Shorter:

We’re out, Bye.

Subscribe to the PandA Pod now

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The National Disability Rights Network (NDRN) is excited to introduce the first-ever episode of the PandA Pod, a brand new podcast. The podcast name, PandA Pod, was inspired by the Protection and Advocacy (P&A) System – P&A…or P and A…as panda, get it? Just like NDRN, the PandA Pod content is all about P&As and provides useful and entertaining training and technical assistance to P&As and our allies in an all-new format. Keep coming back to the PandA Pod for a range of disability rights related topics from some of your favorite NDRN staff and our special guests all year long.

PandA Pod kicks off with a three-part series called Disaster, Disability & Democracy! This series focuses on voting rights and census participation of people with disabilities, and how these areas of democracy relate to disasters and emergencies.

During the inaugural episode, entitled Power at the Polls: Voting Rights When Disasters Strikes, NDRN chats with Mary Ciccone of Disability Rights New Jersey who explains the state’s efforts to get ballots to all voters immediately following Super Storm Sandy, with some important lessons learned. Following Mary’s interview, we check in with Neal Kelley of Orange County Elections in California about elections under the threat of wildfires, and some best practices for advance preparation.

Transcript

Michelle Bishop:

All right y’all, are we ready?

Erika Hudson:

Yes.

Justine “Justice” Shorter:

I think we are.

Michelle Bishop:

Here we go. Let’s do it.

Justine “Justice” Shorter:

Hey….

Michelle Bishop:

Welcome fearless listeners. Today is the first-ever broadcast from PandA Pod.

Justine “Justice” Shorter:

Hey now!

Michelle Bishop:

If you haven’t heard, PandA Pod is NDRN’s brand new podcast channel designed to deliver training, technical assistance, useful and most importantly entertaining content the P and A’s and our allies in an all-new format. Keep coming back to PandA Pod for podcast series on any range of disability rights topics from some of your favorite NDRN staff.

Justine “Justice” Shorter:

That would be us.

Michelle Bishop:

And our special guest all year long.

Erika Hudson:

If you’ve tuned in today you’re just in time for our first episode series of Disability, Disaster & Democracy. Where we’re going to be talking about elections and census data and how it all relates to emergency preparedness and disaster planning. But without further ado, let’s introduce our host for the PandA Pod, Justice.

Justine “Justice” Shorter:

Hi everyone. It is I, Justine “Justice” Shorter. I am the Disaster Protection Advisor here at NDRN and I am absolutely thrilled to be joined here today by my two spectacular co-hosts.

Justine “Justice” Shorter:

But let me… And we’ll go into a little bit more, more about the series, but before we do, let’s go ahead and kick it over to Michelle.

Michelle Bishop:

Hey, this is Michelle Bishop, you may know me as your Voting Rights Specialist here at NDRN and I can’t pass up this opportunity to also give a shout out to PAVA #IRL, my video blog, check it out.

Michelle Bishop:

And now let me introduce Erika, Queen of the Pun.

Erika Hudson:

That’s an honor and a privilege to have that name, but my name is Erika Hudson. I’m a Public Policy Analyst here at NDRN and my main focus is Census 2020 that is quickly approaching and I also have the opportunity to work with the rest of our public policy team here at NDRN on various sorts of topics. But so excited to be with you all today and excited for this first series to get started.

Justine “Justice” Shorter:

Yes, it’s going to be a really phenomenal one. Talking about disasters, emergencies, humanitarian crises. It’s going to be great.

Erika Hudson:

Yes, I’m excited.

Justine “Justice” Shorter:

These are difficult topics, but they are worth us having the conversation about it. People are approaching these topics from such unique and innovative ways. It’s really a wonder to the whole, just the great ways that people are trying to protect the rights of people with disabilities and advocate for folks out there on the front lines. It’s amazing.

Erika Hudson:

It’s probably time to talk about it. I mean, 2020 not a small year I would say.

Justine “Justice” Shorter:

No, it is a big year. I would say we would go so far as to say big.

Michelle Bishop:

Maybe they’ll be a little election.

Justine “Justice” Shorter:

Something happening down in November.

Michelle Bishop:

There might be an election.

Erika Hudson:

And of course census year as well.

Justine “Justice” Shorter:

We called the big ‘C’.

Erika Hudson:

Do we? Do we?

Michelle Bishop:

I’m not sure that anyone calls it that.

Justine “Justice” Shorter:

I think we should. Coining new phrases.

Michelle Bishop:

You heard it here first on PandA Pod.

Erika Hudson:

The big ‘C’.

Justine “Justice” Shorter:

It’s so important though, because the election is happening on the heels of hurricane season, which ends in November, but it’s also so important to make sure that everyone is counted, including folks with disabilities and it’s so central when we think about disaster funding, disaster assistance, and that’s a lot of what this series is about. We’re really trying to get at issues at the intersection of disability disaster in democracy. That’s the whole theme of this three-part series that we’ll be doing here over the next few weeks.

Michelle Bishop:

Before we actually get into today’s topic, since I noticed you called November the heels of hurricane season, I’m from New York, we don’t call it that. We call it Midwinter where I am from. So either way it’s less than ideal time I suppose for an election and we don’t know who’s listening today and where they’re from and I would imagine a lot of folks when they think disaster, they think of the States that are typically impacted by hurricanes. But this matters everywhere.

Justine “Justice” Shorter:

It absolutely does. So we think about this and some of the most frequently hit states. You think about this in some of your Gulf Coast states. You think about this in terms of the wildfires in California. But yes, as Michelle mentioned, obviously disasters can happen anywhere in the country, right? And you have typhoons that are taking place in the Pacific islands and you have all types of flooding that occurs on a just anytime of the year. Flooding can happen anytime. Also, home fires, there’s all types of emergencies that happen, both natural and manmade that happened that could keep people away from the polls due to displacement or any other number of reasons. And so it’s important for us to just sit down and have the conversation and just look at the myriad of ways that people are impacted by these issues. And let’s figure out what we can do as advocates, as attorneys, as people who care and take it from there.

Erika Hudson:

And that’s why our census data is so important, so we know where people are at all times and whether that’s to prepare for disasters or emergencies or after to see how different communities change over time, especially if they were impacted by any type of disaster that you just said.

Michelle Bishop:

So correct me if I’m wrong, you were referring to data from the big ‘C’?

Erika Hudson:

Yes, the big C. We’ll talk about on our second episode of this series.

Michelle Bishop:

Justice, tell us about today’s episode.

Justine “Justice” Shorter:

Today’s episode we’re going to kick it off with an episode about voting rights after disasters. So we’ll be hearing from representatives from Disability Rights New Jersey. They’ll be talking to us about a lot of the phenomenal work that they did after Super Storm Sandy in 2012. And then we’re going to kick it over to Orange County and they’ll be talking to us about some of the innovative things that they are doing to ensure that individuals with disabilities have equitable access to elections following disaster. So they are exciting and engaging, captivating conversations. We do hope that you guys will stay with us throughout. Mary, from disability rights New Jersey. Kicks us off, Mary.

Mary Ciccone:

My name is Mary Ciccone. I’m the director of policy. I’ve been with Disability Rights New Jersey and its prior name, New Jersey Protection and Advocacy since 1998.

Justine “Justice” Shorter:

Awesome. So I initially met you Mary, at the NDRN 2019 Annual Conference and you were attending a round table that was on voting and you mentioned that this concept of voting rights after disaster, so that is where I personally would love to start. Why did you bring up that question and can you talk to us about the importance of voting rights after disasters?

Mary Ciccone:

I brought it up because it’s an experience that here in New Jersey we experienced firsthand and nonetheless as people are now experiencing wildfires in California, hurricanes in Texas and Florida and disasters all over the country. It’s something that I think people need to be prepared for. In 2012, it was a week before the election and we were hit by hurricane Sandy. The problem with hurricane Sandy was it hit the shore pretty hard. A lot of buildings were destroyed, and flooding, and surge and all of that, but throughout the whole state, power was out for weeks throughout the whole state. So, even if you didn’t get the full effect of the storm, the residual effects continued on for several weeks. And because it was a presidential election year 2012 it was one week before the election, we were scrambling. The division of elections was scrambling. The local County officials were scrambling to try to figure out how they were going to hold a presidential election one week after this natural disaster. So it’s something that I think people need to be prepared for because you just never know when disaster is going to strike. And I say it hit the entire state. So it was something that it wasn’t just one little small area, it was statewide.

Michelle Bishop:

and good thing. It was just a minor election.

Mary Ciccone:

Yes. It could have been anywhere worse, so it was a presidential election which has the most people voting and it was a big deal. That was the biggest problem. And basically we were flying by the seat of our pants. The director of the divisional elections and the secretary of state were just every day throwing out emergency rulings to deter on who could vote, where people could vote, all kinds of other stuff. People were just trying to throw up ideas of how we could get people to vote in as many, even though they weren’t living where they normally live, they were displaced, I mean it was a problem.

Michelle Bishop:

So you talked about this a little bit, the power outages, buildings being destroyed and I think a lot of our listeners aren’t going to remember exactly how devastating Super storm Sandy was. How badly did that shake up the traditional model of polling place voting?

Mary Ciccone:

There were certain counties like Ocean County where many polling places just weren’t available, period. They either had no power or their polling place was damaged beyond repair, or at least in time for the election. So they either had to find new polling places, they had to try to find places that people could get to. Because you got to remember not only were polling places not available, certain roads were impassable. There were trees down everywhere. It was a problem. And even in other counties, as I say, the problem was statewide because power was out. So a lot of polling places just couldn’t be used because there was no power. So the voting equipment couldn’t be used in those locations. So there was suddenly they had to try to change election locations. The state rules regarding vote by mail people were like, “well, maybe I can do vote by mail.”

Mary Ciccone:

The problem is vote by mail in New Jersey, you have to request that vote by mail ballot by mail one week before the election. And if not, then you have to go in person. Well, if you had had to move out of the state, which a lot of people did because they had no home, they had no power, many people were displaced across the entire state, it wasn’t easy to get back to your County board of elections to get that vote by mail ballot. So there were all kinds of issues and they say displacement of people was one of the biggest problems because they say if your home was destroyed, people evacuated all up and down the shore and they weren’t allowed to return home. So there was no coming home. So they were evacuated and then they were gone, for many months. And when you consider there was election one week later that created all kinds of problems.

Mary Ciccone:

If it had been a month before the election, it wouldn’t have been such a problem, but it literally was one week and they say the opportunity to vote by mail, that was ending when if you wanted to request that vote by mail ballot, by mail, you had to do that one week before the election.

Michelle Bishop:

I’m wondering what are your top three lessons learned from this experience? If you had three main takeaways that you want our audience to remember today to help them prepare wherever they are, what would those be?

Mary Ciccone:

First of all, I think one of the big lessons is it can happen anywhere. You don’t think it can happen to you. I grew up in Ohio and so our biggest fear was always tornadoes. But if you know anything about a tornado, it’s only going to hit a real small area. Even if it’s a really bad tornado, it might wipe out a town, but it’s not going to affect the whole state. But coming out to New Jersey, I’m like, Oh hurricanes, they don’t really hit New Jersey, they hit the South. We don’t really get hurricanes. Well we got hurricanes two years in a row. We got Irene 2011, flooded big chunks of the whole state. And then literally the next year we got Sandy, which devastated the whole state as they say, knocked out power, displaced lots of people throughout the whole state and devastated the shore area.

Mary Ciccone:

So it can happen and it can happen anywhere and you need to be prepared. One, you need to think through what happens if all the power goes out in the state. Voting is dependent on power. You need lights for people to see to go in to vote. Voting machines are electronic equipment, they don’t run on, do they have batteries? Do they have battery backup? They’re not going to operate if there’s no power. And if people are displaced, if something happens where they all have to be evacuated for whatever reason people are not going to be where they’re supposed to be. And if this all happens right around an election, it becomes a major problem. So it’s something that you have to realize that it can happen anywhere and you don’t know when a natural disaster you might hit, but it can and again happen literally anywhere in this country.

Mary Ciccone:

So everybody needs to think in terms of where, what happens if there’s no power and what happens if people are displaced. Because those are the two biggest issues. As I say, most polling places were not destroyed. Most polling places were, the buildings were fine, but they had no power and people moved away or evacuated because they had no power or they were told to evacuate and couldn’t get back home. Those are the issues that remains. So be prepared. I think the other thing is have a good relationship with your division, the person heading the division of elections for the state have a good relationship with all the other partners that we have. Your league of women voters, your ACLU. They may not be as concerned about disability voting, but there everybody has a concern about voting.

Mary Ciccone:

So by having regular meetings, we’re very lucky. We have these regular meetings before every election and in a presidential election year we usually have a couple more to discuss these issues, so we address them before there’s a problem. And the director of the division of elections, I have his address, phone number, he answers me whenever I have a question. So we have a really good working relationship.

Mary Ciccone:

I know other States that may not be the case, but by talking to him regularly he understands now, after I’ve been doing this for however many years I’ve been doing voting and I’ve been dealing with him, he understands accessibility, he understands the need to make sure that people with disabilities have the same access to voting that everybody else does. And if I have an issue, he tries to address it before there’s a problem. So I think having a good relationship with these other partners has really helped. And I say when this happened, he got on the phone and they were very transparent about what they were doing and they wanted our help to get out to our constituents to let people know what was going to happen. So we worked together on that issue.

Mary Ciccone:

Basically those are my two big issues. And three, when emergency does strike throw out any ideas. Some may work, some may not, but when there’s an emergency situation people want to vote. So how are you going to get as many people voting as possible? And I say some of the ideas worked, some of the ideas did not, but people were still trying ideas because it’s something that when push came to shove, everybody in our group had the same goal was to get as many people to vote as possible. So we all worked towards that one purpose and when things didn’t work, we were like, okay. That’s not working. Let’s try something else. But it’s better to work through those ideas beforehand so you can actually think them through, but sometimes that doesn’t happen.

Justine “Justice” Shorter:

Mary, I just want to tease out something that you said. Voting depends on power. Not just the electricity but also the electric, the power of the people and I think you drove that home as well as the power of these collective organizations coming together to protect the rights of individuals to vote. And specifically we’re thinking about this in terms of the protection and advocacy agencies who do such stellar work across the country and then the territories is to protect the voting rights of individuals with disabilities. So we sincerely appreciate you bringing that point home here as we prepare to close out. But before we do, we want to ask, is there anything else that you perhaps would like to mention or say that we perhaps didn’t ask you already?

Mary Ciccone:

I remember, just the idea that, Oh my gosh, how are we going to get people to vote when everybody is out of state or out of their district or wherever. And it’s like, what, how are we going to count the votes? How are we going to handle it? I mean, it was just this big fear that the election was going to fall apart and it didn’t. And people did get to vote. But that was because of the collective effort by everybody to make sure that everybody had the right to vote. And I think that’s probably the biggest thing, but it sure would have been nicer if we’d planned for it ahead of time. I think things would have worked a little bit better.

Michelle Bishop:

Mary, I’m sorry it took us eight years to interview you.

Michelle Bishop:

We just got a podcast.

Justine “Justice” Shorter:

Yes, we’re working on this.

Mary Ciccone:

Yes, I know. It’s going to be a busy year. Thank you.

Michelle Bishop:

That was amazing, Mary. Thank you so much. I think your experience is being caught completely off guard, and having to run an election immediately after a storm, that I don’t think anyone thought was going to reach all the way to New York and New Jersey. That’s got to resonate with a lot of our listeners.

Justine “Justice” Shorter:

I think that happens so often. No one thinks it will happen to them until it happens to them. Right? And so making sure that we are prepared as much as possible, but still being fully cognizant that things do not always go as planned. And so having those relationships with people and just being ready to get in there and do the work on the ground, make the connections, identify the problems and figure out very quickly what possible solutions exist can really get us many steps further in the process. And I think that’s a lot of what Mary hit on during our conversation and this is what many advocates have echoed all across the country when it comes to these issues so we’re super excited that she highlighted those for us today.

Justine “Justice” Shorter:

And now we have another great conversation.

Michelle Bishop:

We do. This is a great way to shift gears because our next guest is Neal Kelley, who’s with Orange County elections and Orange County actually spends a lot of time preparing and thinking about how they’re going to ensure access to the ballot during or after disaster so that they won’t be caught off guard. Neal, thank you so much for joining us today. Please tell us about you.

Neal Kelley:

Absolutely. Neal Kelley. I’m the Registrar of Voters for the chief elections official for Orange County, California.

Justine “Justice” Shorter:

Fantastic. And I think Michelle will kick us off with a question or two.

Michelle Bishop:

Absolutely. Neal, how long have you been running elections in Orange County, California?

Neal Kelley:

I am coming up on my 16th year of doing this, which is a little unusual because in California, the average tenure is about five years for this position.

Michelle Bishop:

So a lot of your voters are actually voting by mail. How-

Neal Kelley:

They are. Yes.

Michelle Bishop:

How are they typically receiving an actual postal mail paper ballot? And if so, how do you prepare for disaster when they may not be home or their home may not be there anymore?

Neal Kelley:

Right. So we have a little over a million voters that were voting by mail before this transition to vote centers. Now 1.7 million roughly, voters will all get a paper ballot in the mail. But we’ve also put in new for 2020 a remote vote by mail accessible system. So voters with disabilities or voters that are displaced could easily go online, download their ballot, mark it online, and print it out in any location around the world. So we’re prepared for that. And really, the primary function of that is to provide services for voters with disabilities that might not be able to make it to a vote center, but it has this byproduct of being able to service voters in a disaster or service military voters overseas. So there’s kind of a catchall as well.

Justine “Justice” Shorter:

That’s what we refer to as the beauty of universal design. And kind of having program that are not just in terms of physical access, but also programmatic access, communication access, but building things in a way that’s going to be universally accessible to everyone, not just individuals with disabilities. Neal, a quick question for you. Talk to us a little bit about your engagement with the disability community, this is often the first recommendation that we hear when folks talk about making things more accessible and trying to enhance equity for the disability population, so can you talk to me about the process of engaging with the disability community to make some of these changes that you’ve referenced this far?

Neal Kelley:

I can’t tell you enough how much I appreciate the disability community here in orange County because they’re engaged and we have a number of representatives on our large community advisory board, which is made up of 25 individuals throughout the County. Many of them voters with disabilities, and I can tell you that they have been instrumental in the acquisition of our new voting system in the way that we are providing services to voters with disabilities. And just a quick example. For instance, we have a subcommittee of that group that really educated us on open captions and how we’re doing video education and using open captions versus closed captioning. So they’ve just been instrumental in the whole operation. From top to bottom.

Michelle Bishop:

You talked a little bit about how you prepare for a disaster when you’re thinking about running elections, what sort of partners are you bringing to the table? Even just beyond the disability community.

Neal Kelley:

We a have a law enforcement fusion center here in Orange County that we work very closely with. We partner very closely with Homeland Security and the FBI. We also partner with our local fire authority. And so all of these folks are at the table and having these discussions on how would we respond. We participate in tabletop exercises for instance, with our local fire authority and local law enforcement and that keeps this issue top of mind. We also go through risk assessments internally and then bring in these other outside agencies as necessary to help us with those risk assessments and to provide other perspectives. So it’s kind of broad in terms of what we do here in Orange County and the people that we engage. I’m also fortunate because Orange County is the only County in California that has its own law enforcement fusion center for the entire County. Even LA County doesn’t have that. So, I’m lucky that we have these resources available.

Justine “Justice” Shorter:

Neal, I also wanted to ask you a question here. If you could, you said that you had been doing a lot of planning and things that have been specifically related to preparation for 2020 elections, started here in March. Let’s just dream here a bit. What would you envision the voting process looking like in the next four or so years? You’ve already been doing the work for 16 years. I totally imagine you’re doing it for another 16 you seem to love it, but I wonder, if you could project out for the next four years or so, what would you envision by way of advancements and if you could kind of build a better process as you go, even if the technology doesn’t have space for it now, but perhaps we could just project out and dream for the future. What would that look like for you?

Neal Kelley:

This is really a sea change for Orange County voters for what we’re going through now in this transition, and to me election administrators for so long have been in a bubble and focused mainly on the process of administration and not the voter experience. And I’m trying to take this to a different level to be able to provide a very different valuable experience for voters where there’s more access, there’s more time, it’s an easier process with less barriers and that’s what I’m focused on with this transition we’re making now.

Neal Kelley:

All I can see between now and the next four years is this ability with increased access and ease of use in the system. And I think we’re headed in the right direction. I’m not sure how much your listeners might be familiar with the voting system guidelines and that process of enhancing development of new systems, and I’m very involved in that process, so I see new technology the next four or five, six years coming down the road that can make it even more accessible for voters. So we’ll continue to look at that and we’ll continue to implement those things here in Orange County. There’s no question.

Justine “Justice” Shorter:

A point of clarification, Neal, am I hearing you say that you would like for us to have more accessible means of voting by a hoverboard? Is that where we’re going for the next 10 years or so Neal? That’s just to speak kind of clear for the listeners here, no, I’m joking.

Neal Kelley:

Yes, of course. I mean that’s a great comment. I think the thing that I just wanted to add though is that, this is a probably a horrible analogy, but I think of the Starbucks of voting in that it has to be an easy process that is not a burden or a hassle. And I think there’ve been so many laws and so many regulations that have surrounded elections that creates those barriers, unintended in many cases. But we don’t think about the voters enough and that’s what I’m trying to do and make those changes.

Michelle Bishop:

I need them to get my name right on the Starbucks. But other than that, yes. Absolutely. And I agree. I think there’s so much technology on the horizon right now that’s going to change so much about how we access the vote in general, and I can’t imagine how invaluable some of that’s going to be when we think about elections under less than ideal circumstances. So that’s fascinating.

Neal Kelley:

Yes. And one thing I think we need to keep in mind is that the more that we enhance security, the more potential there is for decreasing access, and then those unintended consequences. So certainly we need to keep that in mind.

Michelle Bishop:

Absolutely. The voter experience for sure. And voters are diverse.

Neal Kelley:

I would encourage if there’s other election officials listening or just people in other jurisdictions is that focus on that disaster recovery plan. Take the time to sit down and think about the risks that you face and how would you deploy following a natural disaster or even an unnatural disaster because we have an obligation to the voters to make sure that there’s accessibility across the board. So even though there’s limited resources, you can sit down and take the time to go through those risk assessments, and that’s important.

Justine “Justice” Shorter:

Ladies, any additional questions for Neal?

Michelle Bishop

The only thing I could add to what Neal’s just said is that I think that any elections officials who are listening are much more powerful than they’ve ever imagined. Elections officials make such important decisions and they set the tone and voting system, manufacturers and vendors, they design what they can sell to you and if you are innovators and you push change then we’re going to see better and better solutions for security and accessibility and flexibility going into the future. So yes, absolutely.

Erika Hudson:

Maybe even hover boards.

Justine “Justice” Shorter:

Very important, very important.

Justine “Justice” Shorter:

Neal, It has been an absolute pleasure and this has been a wonderful, wonderful interview. Thank you. Thank you so much for taking the time.

Neal Kelley:

Awesome. Thanks so much.

Justine “Justice” Shorter:

Wonderful. But ladies, I do have news. We are already at the end of our very first episode of the PandA Pod. We want to thank you all so much for taking this journey with us and we do hope that you will continue on. We have so much other wonderful content in the store.

Michelle Bishop:

We crushed it today though.

Justine “Justice” Shorter:

We have much, much more to share. So we hope that you will join us. I once again am Justice Shorter, Disaster Protection Advisor here at NDRN.

Michelle Bishop:

Michelle Bishop, Voting Rights Specialist at NDRN.

Erika Hudson:

Erika Hudson, Public Policy Analyst with NDRN.

Michelle Bishop:

Specialist in the big ‘C’ census.

Justine “Justice” Shorter:

That’s the next one. And that’s our very next episode. Erika, tell us a little bit about the next episode. What’s coming up next year?

Erika Hudson:

Like you said, the big ‘C’ census 2020 is fast approaching. It’s a big year, not only with elections, but with the census that only happens every 10 years. So on our next episode, we’ll be talking about how census data impacts disaster and emergency preparedness and what it all is about.

Justine “Justice” Shorter:

And the funding attached to it.

Erika Hudson:

They’re funding lot of money going in there. So hello, that’s what I’m saying.

Erika Hudson:

Thank you all for tuning into our first episode of the PandA Pod in our first series of Disaster, Disability & Democracy.

Justine “Justice” Shorter:

It’s been a pleasure guys. Have a good one.

Michelle Bishop:

Hear you next week.

Justine “Justice” Shorter:

We’re out, Bye.

In what is (potentially*) the start of an ongoing series, this month we’re joined by our own Rebecca Shaeffer for a discussion of what people with disabilities experience in the carceral system, how they disproportionately end up there, and what we can do to support returning citizens.

 

*This is contingent on us being organized enough to do that.

 

Full transcript available at https://www.ndrn.org/resource/ndr-april24/

 

Jack Rosen:

All right. Michelle, you want to kick us off?

Michelle Bishop:

I’m sorry. Did we decide who was going to intro the topic and read the bio before we started recording? Or…

Stephanie Flynt:

No, we just clicked record.

Michelle Bishop:

Just started recording when we have no idea what we’re doing?

Stephanie Flynt:

♫ Be prepared ♫ Okay.

Michelle Bishop:

Was that The Lion King?

Stephanie Flynt:

Yes. Well, Nala’s here, I have to sing The Lion King.

Michelle Bishop:

Jack, use all of this.

♫ Intro Music Plays ♫

Michelle Bishop:

Hi, everyone, and welcome back to National Disability Radio. Woo. We don’t have a cheer sound, do we? I keep telling Jack to put a cheer sound in there, but I don’t think we have one.

Stephanie Flynt:

I think I said a cowbell.

Michelle Bishop:

Well, everything needs more cowbell.

Stephanie Flynt:

Yes.

Michelle Bishop:

But, everyone, applaud while you’re listening at home. Woo. All right. Good enough. I’m Michelle Bishop. I’m the voter access and engagement manager at NDRN and one third of your podcast hosting team.

Stephanie Flynt:

And I’m Stephanie Flynt, public policy analyst here at the National Disability Rights Network. And I am the two thirds. Can’t do fractions.

Michelle Bishop:

Look at us doing math.

Stephanie Flynt:

Yeah. I know.

Raquel Rosa:

I also don’t do math. This is Raquel Rosa. I am your community relations specialist here at NDRN, but if we’re going to do thirds, I do like pie and pizza, so we can pretend that I’m the final slice.

Michelle Bishop:

Also, it is April and none of us are doing your taxes, for a reason. We went into civil rights because math ain’t our thing.

Welcome, everyone. We have an exciting episode for you this month. Before we jump into it, do we have any news or exciting or, of course, hilarious things to talk about? And, of course, our producer should introduce himself as well.

Jack Rosen:

Oh, I don’t know, you introduced the three thirds of the podcast team.

Stephanie Flynt:

Oh, no.

Michelle Bishop:

The most bitter thing every episode.

Stephanie Flynt:

Okay, a four. Jack is now a producer host.

Michelle Bishop:

No. That’s not the vibe we discussed. This has been discussed. People all know it’s been discussed behind the scene that Jack is our Gelman. Okay. He’s our producer who’s featured on air. It’s a very specific important thing. I mean, Regis and Kathie Lee were nothing without Gelman.

Raquel Rosa:

That’s a reference for those of us who are over 40.

Michelle Bishop:

Wow. I feel personally targeted, but-

Raquel Rosa:

So, I’m right there. I’m right there.

Michelle Bishop:

Yes. So, we have a really interesting complex topic to bring to you all this month. We’re going to be looking at the intersection of the disability community and the criminal justice system. And this is a topic that it runs so deep in so much of the civil rights work we do in the disability community, and is so complex and so broad that actually if all goes well with this episode, we were thinking of turning this into a bit of a short series of episodes addressing this issue from different angles. Don’t ask us when those next episodes are coming out. We have not planned them yet.

But this month, we’re going to kick it off actually by talking to one of our own. We have for you Rebecca Shaeffer from NDRN. Rebecca joined NDRN in 2023 as a staff attorney for criminal justice and institutions. In this role, she provides technical support and training to P&As in their work monitoring, investigating and litigating rights abuses against people with disabilities involved in the criminal legal system, from police emergency response to jails, prisons, and reentry.

Prior to joining NDRN, Rebecca worked for over a decade in international human rights, where she helped to develop and implement new standards for criminal procedural rights in Europe, the US and Latin America, and supported networks of criminal defense lawyers with international and comparative legal expertise and peer learning facilitation. Raquel and Stephanie were live on the scene for this interview, so take it away ladies.

Raquel Rosa:

Today we have our very own Rebecca Shaeffer. She is the staff attorney at NDRN who focuses on criminal justice and institutions. Rebecca, thank you for joining us today. Tell us a little bit about yourself.

Rebecca Shaeffer:

Hi, I am so excited to be on the podcast. I’m an avid listener. I joined NDRN in July as the staff attorney for criminal justice and institutions. That means that I provide technical support and training to protection advocacy agencies for all of their work on behalf of people with disabilities who are in jail or in prison, who are in contact with police, or who are recently reentering back into society after being incarcerated.

My background is as an international human rights lawyer focusing on criminal systems and penal systems all around the world. And I’m super inspired by the work of NDRN and the protection advocacy agencies and just really excited to be part of this conversation and this work.

Stephanie Flynt:

Awesome. Thank you so, so much, Rebecca. Super helpful to have that background and super excited to have you as an avid listener of the podcast. So, you get a gold star for that one.

Rebecca Shaeffer:

I love gold stars.

Stephanie Flynt:

Yay. All the gold stars, all the awards, all the thanks. So, I guess, I would start off by asking, in your opinion, why do you think that individuals with disabilities are disproportionately incarcerated or affected by criminal systems?

Rebecca Shaeffer:

So many answers to this question. And first of all, I just want to acknowledge that people with disabilities can get into trouble with the law for the same reasons that anybody else can. And so, that happens. They’re people and sometimes they run into trouble and that’s definitely part of the story.

But you’re right that people with disabilities are disproportionately represented in prisons and jails and in criminal systems. And that’s for a lot of reasons, that really come back to our failure as a society to accommodate people in the community with disabilities and our failure to invest in collective care for people with disabilities, such that they become alienated from society. And that happens because people with disabilities, because of failure of society to accommodate them in childhood, because of abuse and neglect and exclusion from school and from activities, because of contact with institutions throughout growing up, may end up with trauma, may end up with a lack of educational and professional opportunities as they grow, or maybe attempting to self-medicate using drugs that are criminalized in our society.

So, for all those reasons, people with disabilities can end up with behaviors that are criminalized. But also, people with disabilities behavior is often misunderstood, particularly by law enforcement, as criminal when it’s not. This is particularly true for people with mental health disabilities, people with autism, developmental disabilities, intellectual disabilities, whose behavior in public sometimes attracts the attention of bystanders or of police and is misunderstood as dangerous or disruptive in some way. And they’re shuttled into the criminal justice system instead of having their needs met through health or care or other sorts of just normal cultural interactions.

We know that people with disabilities are more frequently hurt and killed by police in interactions and that they may find themselves in poverty and in homelessness and in other situations that leave them vulnerable to police intervention in ways that can be really dangerous for them.

There’s also ways that contact with police can go wrong in the course of normal traffic stops or other ways that police interact with people on the street, in public. For example, if someone’s deaf or hard of hearing, if they’re blind or low vision, or if they have mobility impairments, they may not respond to police when they’re told to stop or put their hands on the dashboard, in the same way that differently-abled people may, and that can be misunderstood by police and lead to unnecessary arrest or violence by police. So, these are the ways that people with disabilities get funneled into the criminal justice system at a disproportionate rate.

Raquel Rosa:

Thank you for shedding some light on that. Rebecca, you’ve touched on this a little bit. And in my thinking just about the breadth of the disability experience, I was hoping you could talk a little bit more about what it’s like for people with disabilities who are incarcerated. I’m sure it’s the big bite to take of the apple, but if you could just talk a little bit more about that.

Rebecca Shaeffer:

Being incarcerated is a horrible experience for pretty much everybody who goes through it. So, I want to start there, but it’s certainly not set up for people with disabilities. I mean, prisons and jails, like any other institution, have to comply with the Americans with Disabilities Act. Facilities should have an ADA coordinator, but nothing is going to away the fact that these facilities are just not set up for people with disabilities, regardless of what their disability may be. And this differs by facility and it differs between jail and prison. Prisons may be a little bit better some of the time at accommodating people, but if you can imagine, for example, being deaf, using sign language to communicate with people and having to be handcuffed every time you’re moved from one part of the facility to another. You can’t speak, you can’t communicate with people. How few people in that facility use sign language, understand your language, and how infrequently you’re provided with translation, appropriate video technology to make phone calls and communicate with, for example, medical staff.

All of these things make traversing an ordinary day incredibly perilous. And you can imagine the same thing for people who may be blind and low vision. Responding to the intense disciplinary regime on the intense demands for obedience and compliance with orders, requires an ability to understand and respond to the demands of officials quickly, or face discipline, which happens to people with disability quite a lot.

So, when their needs are not accommodated, they’re often disciplined, they’re put into solitary confinement perhaps, or they have privileges for folks. We may also find that people with disabilities don’t have access to programs inside, so they can be really isolated and not given the same access to recreation, to personal development that other people may have. And this can even mean that they end up spending more time in jail and prison than other people because they can’t, for example, get good time credits for taking programs, or demonstrate that they’re rehabilitating themselves in the same way that other people can.

So, there’s a lot of exclusion inside, a lot of isolation and alienation and a lot of punishment. So, we find that solitary confinement is used incredibly disproportionately against people with disabilities, often with mental health disabilities but not exclusively. And that has a knock-on effect of trauma and further disabling as people decompensate in an environment where they have really no stimulation, no human contact, no recreation inside.

And then, people who have difficulties with mobility just have trouble getting around these facilities. They’re not always accessible. People are not always given the medical equipment they need to get around. They may not be able to access the recreation yard. And we see this happen a lot as people age in prison and their needs change. There’s very little screening for people with disabilities, particularly for cognitive impairment, for autism, for DD and IDD. I mean, if you don’t come in with a strong sense of what your disability is and an ability to explain that to authorities, it’s unlikely that it’s going to get picked up.

And this is all happening in a background of just really poor access to medical treatment in a lot of facilities. So, if people have been on Medicaid on the outside. Inside, you don’t get Medicaid. Medicaid is cut off, social security is cut off, and your healthcare is provided by the prison or the jail. Usually, they have a contract with a private company and they’re motivated to cut costs. And in order to get access to healthcare, it’s not like there’s preventative care and you get regular well-personed visits like you would on the outside. You have to have a symptom that’s severe enough that you can convince a prison officer to get you to the medical clinic. And it can be really hard to convince workers at the prison that your medical complaint is serious and real. These are often ignored.

And then, the care that you get inside may be very, very poor. So, we see a lot of preventable illness and injury going untreated and people incurring unnecessary pain and suffering, illness, and untreated injury that happens to them because they don’t have regular and good access to healthcare. And there’s a lot of just punitive attitudes by prison and jail workers against people who are incarcerated. They’ll think that people are malingering, they say basically making up that they have health problems when they don’t.

And then, there’s also an accessibility issue here because in order to get the attention of prison officers to file a grievance or a request for medical care, usually you have to fill out a little form. And again, this is not a communication system that’s accessible to everyone. So, a lot of times people with disabilities have to rely on the kindness of another incarcerated person to help them fill out requests for medical assistance, grievances, complaints, requests for accommodations. And that can be really difficult depending on who you’re incarcerated with and what your disabilities are, what your relationships are like with people inside. So, everything just becomes much more difficult, and most people come out of prison in much worse health and with less capacity than they did going in.

Raquel Rosa:

This is incredibly sobering. And as you were speaking, I thought a lot about just the deference to people having bad motives, that in other words, people are governed to be sneaky or to do bad things. And so, therefore, the approach within the carceral system is to treat people poorly because they’re up to no good.

And then, with the added layer of disability, it just makes me think about easy scapegoat-type activities. This just sounds like a very lonely and painful experience for people. I am having a hard time just imagining what that experience is like. It is incredibly shocking and just makes me really think about the gaps that we have in our own movement to make sure that people with disabilities who are incarcerated are also part of the disability justice movement.

Rebecca Shaeffer:

Yeah. Thanks for saying that, Raquel. I think it’s really true. I mean, because of the nature of politics and the punishment ethos that’s really deep in American society, I can see where the disability justice movement hasn’t necessarily always embraced those members of our community who are in conflict with the law. I mean, it’s not a great constituency to bring to the hill. And there’s a way in which people with disabilities are sometimes seen with this sort of veneer of innocence, as good victims who need help. And we know that that’s not true and not the way that we want to be seen, not the way our movement wants to be seen, but this population of people, it’s a difficult constituency politically for our movement to embrace. But I think that we cannot participate in our collective neglect and abandonment of people with disabilities, that are the reasons why they ended up in prison in the first place.

And we also have to think about the future. What’s our vision for the freedom and liberation of people with disabilities? What do we think is happening to people in prison and what do we want for them on the other side of that? Most people are coming back to the community, and in what condition are they by the time they come out, if they come out? Because a lot of people also die inside or are further injured or disabled by their experience of incarceration.

So, I do think that we have to embrace our siblings who have experience of incarceration, to understand that jails and prisons are part of a continuum of carceral approaches to disability that includes institutionalization, that includes social erasure and exclusion from society. And to realize that jail and prison are just another way to disappear people with disabilities. And to refuse to participate in that, to continue to embrace them through the time that they’re incarcerated and all the way through their lives, requires us to confront our own stigma.

We also have to confront the ways that racism interacts with disability discrimination, and to understand that people who are, for example, Black and male and autistic, walk through this world with a different set of dangers than people who are white and autistic. And for us to really contend with those intersections, and to not leave any of us behind, because we’re not free till we’re all free.

Jack Rosen:

Rebecca, you’ve touched on a lot today, and I’m just wondering what we can do to support returning citizens with disabilities.

Rebecca Shaeffer:

I think it’s really important for people who work in this space, who work with people with disabilities to understand the ways that periods of incarceration impact the needs of people with disabilities. They are going to have disruptions to their benefit. They will have disruptions to their healthcare, and they will also have significant trauma and lack of faith in authorities. And all of these experiences make it harder to connect folks with the services they need.

So, to just be sensitive and proactive about understanding people’s histories of incarceration. You may not know that someone has been incarcerated before. You probably need to take proactive steps to reach out to places of detention, to reentry organizations to offer a disability-informed lens. I mean, ultimately, I think that neither the movement to reform our criminal legal system, our movement to liberate people from over-incarceration, and the movement for disability justice and liberty and power for people with disabilities depend on each other. And neither one of those movements is going to be successful without the other.

I see so often from my background in criminal justice reform that the kinds of reforms that are suggested often, unfortunately, are going to drive people with disabilities into institutions. Decarceration by itself is not going to solve the problem of failure to invest in community care. And at the same time, the disability justice movement can never be fully realized until we get our people free from prison.

So, I think that we need to be deeply in conversation with each other to ensure that the kinds of solutions, the kinds of policies we’re promoting are cognizant of the fact of criminalization of people with disability and the failure to provide appropriate care in the community, both driving incarceration and driving institutionalization.

And we’ve seen in the past few years, just a huge backsliding in commitment to freedom for our people. We’re seeing a return to policies that promote institutionalization, and we’re seeing a backlash to the small reforms we got following the uprising around the murder of George Floyd and the decarceration efforts that were made during COVID. Just a huge backlash and movement to both re-incarcerate and re-institutionalize our people, and a failure to invest in what we know works to keep people safe and together and in community.

So, I think that movement actors in both of these fields need to work really closely together and understand what it is people need to be safe and to be free, because ultimately, that’s a goal that we have in common, people who are working to make the criminal justice system fair and people who are working for disability justice. But the solutions don’t lie in just one of these conceptual political areas, and the solutions are what we need to focus on, because right now it seems like political actors and the press and the public seem to think the only option for meeting people’s needs is to put them somewhere, put them in a jail, put them in a hospital, put them in a group home, take them out of the community. But these are our people, this is our community, and we can only build public safety for all of our people together.

Stephanie Flynt:

Wow. Thank you so, so much, Rebecca. This has been an amazing discussion and I’m so glad that we were able to have this discussion today. I know that I found it very valuable, and I’m sure that our listeners will also find it valuable.

But I wanted to check in with you to see if you have any other final thoughts. I know that Jack made a great point about checking in to see how we can support individuals with disabilities when it comes to transitioning out of the carceral system, but I just wanted to see if you have any other final thought that you’d like our listeners to know or that you’d like us to know?

Rebecca Shaeffer:

Such a downer. I’m never the fun one at the party.

Stephanie Flynt:

You are the fun one. That’s why we have you here.

Rebecca Shaeffer:

The work that I do. I guess, what I would say is that despite the grimness of this area and the pain and the suffering that people are going through in incarceration, I have a lot of hope for this movement, particularly at the intersection of disability and criminal justice for reform and liberation movements, because I think it touches on such core values that we have as a society. Values around liberation, around belonging, and that there’s a huge amount of joy, of healing, of redemption that’s available to us if we can address the stigmas that we all have, both against people who have been in conflict with the law and people who have disabilities. And continue to work toward acceptance, belonging, and working towards solutions that really prioritize safety and health.

These are really positive values that we can promote that, I think, work politically, that work interpersonally, and that can lead to real paradigm shifts in what we consider to be public safety, because that means safety for our people.

Raquel Rosa:

Well, Rebecca, like I said earlier, you’ve given us so much food for thought, enlightenment and ways for us to just deepen our advocacy and to lean into the less obvious aspects of disability justice.

I feel like this is probably the most humbling episode that we’ve ever had, and I think I speak for all of us when I say how much we appreciate you for the work and commitment you have made to this aspect of our work. Thank you so much for being here.

Michelle Bishop:

Stephanie and Raquel, thank you so much. And of course, Rebecca as well. That was a fascinating conversation. I feel like we opened up more issues than we can possibly resolve in one episode of one little but very mighty podcast. So, I suspect you are going to hear some more episodes from us going forward, on this issue. But until then, now that she’s back in action, I suppose I have to ask, Stephanie, did you bring us a joke?

Stephanie Flynt:

Okay. Are you ready for my very much anticipated joke? Because I think it’s going to be a home run today.

Michelle Bishop:

Oh, no. Oh, that’s a clue. Okay. Yes, Stephanie.

Stephanie Flynt:

Oh yeah, absolutely. So, I do have a question. What do y’all think that brownies and baseball teams have in common?

Michelle Bishop:

Okay. Wait, wait, wait. So, brownies, the dessert, and a baseball team? Is that the question?

Stephanie Flynt:

Yes. Yes.

Michelle Bishop:

Okay. I’m thinking.

Stephanie Flynt:

What they have in common.

Raquel Rosa:

Is it batter?

Michelle Bishop:

Oh.

Stephanie Flynt:

They need to have good batters.

Michelle Bishop:

Oh, boy.

Stephanie Flynt:

This is courtesy of the Ben and Jerry’s thing in my fridge. I can’t remember what, I think that’s their chocolate fudge brownie thing. Not that this is a sponsorship, but if Ben and Jerry’s wants to sponsor my-

Michelle Bishop:

Your freezer?

Stephanie Flynt:

My freezer, that would be great.

Michelle Bishop:

Stephanie’s freezer brought to you by Ben and Jerry’s. There’s a chance we can’t use any of this, can we? Can we use this, Jack?

Stephanie Flynt:

I gave credit to Ben and Jerry’s.

Michelle Bishop:

Are we allowed to talk about them like this?

Raquel Rosa:

I think that’s another question for our general counsel.

Michelle Bishop:

All right. I’m making a list.

Jack Rosen:

I mean, my answer is, as I’ve often said on this podcast, if they sue us, it would be good publicity.

Raquel Rosa:

Then, I guess, you’re taking care of the legal fees, Jack.

Michelle Bishop:

Why are we allowed to run anything in NDRN? Is the real question.

Stephanie Flynt:

Right.

Michelle Bishop:

That said, got to admit, decent shows this month. Welcome back, Stephanie. We missed you so much.

Stephanie Flynt:

Oh, it’s great to be back. Thanks, Michelle. Thanks, Raquel. Thank you, Jack.

Michelle Bishop:

Jack, tell the peeps where they can follow us on social media.

Jack Rosen:

You can follow us on Twitter, LinkedIn, Facebook, Instagram, and now we’re even using Threads, so be sure to check us out. As always, you can reach out to us at podcast@ndrn.org. Until next time, folks.

♫ Outro Music Plays ♫

On this episode of National Disability Radio, we sit down with three women leaders in the disability rights movement, Marlene Sallo (NDRN), Maria Town (AAPD) and Robin Troutman (NACDD) for a discussion about the challenges of being a disabled woman in a leadership position, the challenges of balancing work and caretaking, and even the Barbie movie.

 

Full Transcript at: https://www.ndrn.org/resource/ndr-march24/

 

Raquel Rosa:

Give me the signal.

Michelle Bishop:

Get us started. That would be stretching if you heard that.

Raquel Rosa:

That stuff is all to be removed. 3, 2, 1.

*Intro Music Plays*

Michelle Bishop:

Welcome back to National Disability Radio. To all of our loyal listeners, we are really excited this month because it is Women’s History Month. I am Michelle Bishop with NDRN. I am one of your hosts of the podcast.

Raquel Rosa:

And I am Raquel Rosa. I am another of our hosts. It’s good to see you all today.

Michelle Bishop:

And unfortunately our last host, Stephanie Flynn, is out on leave. So she’s not with us this month, but she will be back. Stephanie, we miss you. Don’t leave us. I can’t believe I’m going to say this. We are not going to have your jokes, and I might miss it a little bit. So come back to us soon, Stephanie. So like I said, it’s Women’s History Month. Here we are, your all woman podcast, plus Jack. Jack, our producer, if you want to introduce yourself to the people.

Jack Rosen:

See, I was just going to sit back and listen, being as it’s Women’s History Month.

Michelle Bishop:

Oh, bravo. Yes, yes. We love an ally, yes.

Raquel Rosa:

Yes. Sisters before misters. Thank you, Jack.

Michelle Bishop:

So should we get right into it? Raquel, do you want to tell the people about this episode?

Raquel Rosa:

As Michelle said, this is Women’s History Month, and she had the pleasure of sitting down with three women leaders in the disability rights movement. She had a great conversation with Marlene Sallo, the ED of NDRN, Maria Town, who is the president and CEO of AAPD, and Robin Troutman, the interim ed of NACDD. Take it away, Michelle.

Michelle Bishop:

So this month on National Disability Radio is Women’s History Month. Ladies, it is our month and we have a really exciting conversation for you today. I’m going to be talking with three women who are leaders in the disability rights movement about where we’re at, where we’ve come from and where we’re going. So if I could ask you all to take a moment first to just introduce yourselves to our listeners, Marlene, would you like to go first?

Marlene Sallo:

Sure. Hi, everyone, I’m Marlene Sallo and I’m the executive director here at NDRN, and I go by the pronouns she/aya.

Michelle Bishop:

And Maria.

Maria Town:

Hi, everyone, my name is Maria Town. I’m the president and CEO at the American Association of People with Disabilities. Pronouns she, her and hers.

Michelle Bishop:

And last but never least Robin.

Robin Troutman:

Thank you, Michelle. Hi everyone, I’m Robin Troutman, interim executive director at the National Association of Councils on Developmental Disabilities. And I go by she/her pronouns.

Michelle Bishop:

So to get us started, since we just have such an amazing group of leaders on the podcast today, I was wondering if you could just tell us a little bit about your experiences specifically as a woman in leadership in the Civil Rights Movement and what it took for you to get here. It’s an open question for anyone who has thoughts.

Marlene Sallo:

Well, being that I’m in my feelings today, this is Marlene. I can safely say that it’s been a long road. I would say I’m the oldest one here on the call. And being a woman of color and an immigrant, there’s been a lot of doubt along the way from certain people in certain circles as to whether I could rise to the occasion. Obviously, I always have, but the microaggressions that I’ve encountered throughout my career are real. But you learn to ignore the noise, and you just live to your full expectation, and you show up to work, and you get the job done.

Robin Troutman:

This is Robin. I’ll just note that as a relatively new leader in nonprofit worlds, I suffer from a terrible case of imposter syndrome, that I definitely look around the room even on this podcast today of oh my, how am I included with these extraordinary women? But every day I learn a little bit more how to believe that I’m supposed to be here and just prove myself, as Marlene said. Just show them who you are and what you can do, and it will keep them quiet.

Maria Town:

This is Maria. I’ll just add, and I want to point out that Marlene said something amazing. She said, “Obviously, I always have.” And I just want to cheer for that. Obviously, she’s always risen to the occasion, and that’s true for so many of us. I think for me, especially as someone who is younger and who has a very visible developmental disability, a lot of times when I come into rooms, people just assume that I am not a leader. And I’ve had to really learn how to exert and show my own power because I think people just assume that someone who moves like me and who looks like me isn’t going to be a president and CEO.

And I’ve had to deal with a lot of internalized ableism, and I’ll give an example of this. Being specifically a leader of an organization that does a lot of work in DC, there’s a lot of moments where you’re supposed to be working a room, moving around it and shaking hands and making sure you catch the ear of a policymaker or another influential change maker. And I physically cannot do that a whole lot of the time. And so I have to constantly tell myself that I’m able to do the job that I have and find other ways to make it work. And that often relies on actually working with other people like Marlene and Robin and saying, “Hey, can you go tell this person over there that I want to talk to them and maybe make them come to me?” Or positioning myself next to the food or the drink table to make sure that I am seen, so that people can’t just walk on by or look me over.

Michelle Bishop:

Maria, positioning yourself next to the food is absolutely brilliant. I am stealing that one in the future. But we’ve known each other for a while, Maria, and I’ve never heard you talk about that before, about the expectation of who you are when you walk into a room based on your disability. That’s really powerful, and all of this is real. The ableism, the microaggressions that Marlene talked about, especially for women of color, all of these things that we’re up against, even if we keep moving forward. And I actually really felt Robin when she was talking about the imposter syndrome. That is my life every day. I constantly feel like a kid from Syracuse, New York, and every time I’m in a room with important people, I’m like, “How exactly did I get here?”

So it’s real and I think that that’s really a common experience for women, in particular, who are in places of leadership. And we could probably take more than a podcast episode, it would probably take a whole day just to dig into one of those issues. And I regret that it’s just a podcast and we don’t have all that time. But if we were to maybe take it and do something with it, something that’s useful for our listeners, how could we maybe better support women who are in our movement and create meaningful opportunities for involvement and for leadership for women in the disability rights world?

Robin Troutman:

This is Robin. I think something that is so important, not only in the disability community but for women, is that we have to just support each other. We can’t be fighting with each other because we’re already getting a lot of, as everyone said already, internal ableism and systemic racism and ableism and misogyny. And so we have to be able to support each other and uplift each other, because if we don’t do it for ourselves as women, as women or in the they/them or women presenting, then who else is going to? So we need to be able to find our own common ground and lift each other up.

Maria Town:

This is Maria. I feel like it’s always important to point out that disabled women and women of color and women leaders need a lot of the same things. Being a leader does not mean that you don’t also have caregiving responsibilities and need paid leave. Being a leader doesn’t mean that you also aren’t on benefits and need drastic improvements to our nation’s benefit systems so that you can save money and actually plan for your future. And I think a lot of the policy change that all of us are working on as individuals and all of us are working on in our organizations is hopefully change that when it happens will allow more women to lead, more women of color, more disabled women, more queer women, because I am constantly thinking about just who is not in these spaces with all of these important people. Not because they don’t have the knowledge or the expertise or the skills, but because our systems are keeping them out.

And I think one of the reasons that I am where I am today is because systems happened to work for me, and I feel like it was a just moment of luck, and I shouldn’t have to feel that way. I should have confidence that systems like inclusive education will work for everyone. And I think we still got a lot of work to do on that front.

Marlene Sallo:

I agree with everything that was said, so plus one for both of you. I also think about my role as a leader, and really I feel that I have a responsibility to those that come behind me to be a role model, to also bring those along with me, to lift others up, especially young professionals and help them and try to connect them to folks, especially here in DC where it is just so difficult. Just to make sure that I can serve as a source or a bridge for young professionals is so very important for me, especially those that don’t get the same opportunities that others might.

I myself, I went to Title I schools and we had public assistance, and so I worked really hard, but it was that one person who held their hand out to provide a reference for something or who really served as a role model and as a cheerleader for me, which will forever be my eighth grade teacher, Mrs. DiCarlo, that I think of to this day who gave me that extra oomph to have that self-confidence. And so as women, we need to be able to provide that to each other.

Michelle Bishop:

I love this story of a teacher. I don’t know if you all know my mom was a teacher, she’s also our podcast listener, but my mom was a teacher. So you’re going to make me cry, just thinking about how one person that you even meet maybe early in life as a kid is someone who you’ll remember for the rest of your life as having such an impact on the course that you took. I can relate to that. I imagine all of our listeners can. So I want to open that up to everyone. Were there women along the way who helped you get to where you are or are still a mentor or a cheerleader for you? I like that when you use cheerleader, women supporting women, I think is so important. But were there women along the way that were there for you?

Maria Town:

This is Maria. There were so many women along the way for me, really starting with the women in my family, my mom, my grandmothers who I was just thinking about this yesterday. My mom really encouraged me to dream. And I’m from South Louisiana and I thought it was funny that whenever I wanted to learn how to sew, which all of the women in my family did, my mom really did not want to teach me. And I think part of that is because she wanted me to know that I had options beyond being in the home. And my mom is a nurse, but she always really just encouraged me to dream so big and bigger than what I could see in front of me in South Louisiana.

And it’s interesting because I’ve met women along the way who helped me refine a sense of what I wanted to be and who I wanted to become because, of course, disability advocacy was not a career path that I ever saw as a child or even a young adult. And as I’ve continued on my journey, there have just been so many women who have been in the same field as me or folks who are in a completely different field. And I continue to rely on multiple group chats of other disabled women for support and guidance and whenever I need to just yell. I would not be able to get through my day without the support of other women.

Marlene Sallo:

This is Marlene. So along with Maria, I have to say my abuela has always been my biggest cheerleader and biggest supporter. She always used to say, “I brought you to this country so that you could have the freedom to be all that you want to be and all that you can be.” And so she too showed me how to sew. She was a seamstress in Cuba, so I give her a thumbs up for that. But she was also the first one to say, “When you marry, remember you’re not your husband’s maid. It’s equality.” Because in the Latino community, there tends to be that machismo going on.

But along the way I would say my colleagues, I’ve always had a really strong sisterhood with colleagues. We protect each other from any negativity. We lift each other up. We amplify each other’s voices. I think that’s been the best thing of all in my career. Sadly, outside of Mrs. DiCarlo from a leadership perspective, I’ve always worked in a very male-dominated arena. But I will say that the managing attorney in my first legal job, to this day we remain friends because she was so very supportive from day one.

Robin Troutman:

This is Robin and I’ll just start by saying I’m very jealous that you even had the opportunity to learn to sew because I did not and have been struggling to put buttons on my children’s clothes. So jealous that you all had that. I wish I had the ability to sew.

Maria Town:

We can teach you, Robin.

Robin Troutman:

Thank you. Please, please. I could barely do a button. It’s really, really sad. But I think similar to what Marlene shared, my grandmother was just a remarkable model of strength. She came to this country after World War II. She was a Holocaust survivor. She was a cancer survivor. She lost most of her family throughout the years. She lived to be 99. She lost her husband. She lost her oldest daughter, who was my mother. But she always was opening the home, cooking and feeding and saying that we always had a place with her. And so I’m that way too. People have a place with me. They can come over. I’ll feed you. I’ve definitely learned that, that we need to have more of these open, safe spaces for everybody, not just our younger generation and our children, but everybody needs a place where they can feel safe.

And so I’ve learned that from my grandmother, that despite everything that you might go through, that you can still be that guiding light and solid rock for others. And so I try to do that for my friends, my colleagues throughout. But there has been one woman leader who I, to this day, we still get lunch every so often. And I don’t think she realized that I was just sucking up all of the information and mannerisms and everything, how she dealt with conflict I have by osmosis gotten from her. And I feel like I’m a much better person who can have conversations, be more diplomatic, and it’s all from a former supervisor, Melinda, who is just an extraordinary woman.

Michelle Bishop:

I can say for my part, I don’t know if any of the three of you realize how much I look at the three of you in awe on a regular basis because you are all just rock stars. And it’s really amazing and it’s really exciting to see. And the fact that we’re having a conversation about women in leadership in the movement and we’re talking to three women who are running disability rights organizations is incredible.

As we’re having this conversation and all of your stories were amazing in striking, I feel like I learned a lot about all of you today, but moms came up, grandmas came up. We talked a little bit about teachers or professional colleagues, but there was a lot of those women in our families. And earlier in the conversation someone brought up the concept of caregiving. And that’s stuck with me as well in this conversation, where women, we’re going to work, and we are supposed to be bosses and leaders at work, and we’re crushing it, and we are breadwinners for our families and are contributing in that way.

But I feel like there’s still this expectation that on top of all that women are still caregivers. Whether or not we’re talking about a partner or children or aging parents or a loved one with a disability, I feel like that expectation is still there, that women are supposed to be the nurturers and the caregivers. And I’m wondering, what’s that for you all? Is that a pressure that you feel? And if so, how do we find that balance between being a boss at work, and I mean that in a good way, in a way like you’re crushing the game, and also maybe fulfilling some of those that we have at home?

Marlene Sallo:

Ooh, if I may jump in here, it’s Marlene. It’s really hard. I raised my kid by myself, and then that set things in motion where you were constantly going above and beyond what you needed to do because you didn’t want anyone to frown upon the fact that you also had to take care of your children at home. And then my grandma was sick, and we all were pitching in, so then that was the double requirement. And I was here in DC and you find yourself apologizing that you need to go back, that you need to fly out of DC to be there and pitch in for your loved one who was ill. And through all of that, as a woman with a disability who was self-identified later on in life, my disabilities are not apparent, you’re trying to keep all of that in check so that folks don’t say, “Not only does she need extra time, but she also has has a disability that’s keeping her out of work because of pain or whatever.”

And it’s a push and pull, and it shouldn’t be that way at all, because we’re all carrying and we’re all taking care of others and carrying our own personal loads. And we should show each other grace 24/7 because regardless of what’s going on at home, I’m still going to show up to work and I’m still going to get my job done. It may not be within the timeframe that you want, that 9:00 to 5:00 timeframe, but for all you know, I’m getting up at 5:00 in the morning and getting things done before I have to take care of those in my household. And in the evening I may put everybody to bed and then pick up and continue where I left off.

And a perfect example was my first week on the job as an attorney with the state, and my son got really, really ill, and I couldn’t be at work. And I was responsible for first appearances in the courtroom, and I did all of the petitions from my house using my FAX while taking care of my sick child. And fast-forward my first evaluation, and they thanked me for going above and beyond, but said, “I can’t give you the score I want to give you on your evaluation because we don’t have the money to give you a bonus. So we’re going to give you a three instead of a five. But know we noticed your extra effort.”

Robin Troutman:

Oh my Lord, Marlene.

Marlene Sallo:

Oh, I have stories.

Robin Troutman:

I’m sorry that happened. That’s not fair. But I will say similar almost is after I had my second child, six weeks later, I was carrying him at our annual conference because we did not have the ability to hire a temporary staff. So I walked around an annual conference with my newborn six-week-old baby strapped to my chest. But no bonus points there either. But as women we’re expected to make it happen when others aren’t. And I have to say I’m very fortunate that my husband, when it comes to cooking and cleaning, I know that I can count on him, but for things like taking the kids to the doctor and making appointments and knowing when everything is, that does still fall to me in that nurturing aspect. I don’t know if it’s not that he can’t, I think it’s just that’s my organization style.

I’m not quite sure. But that piece where with my kids, I have a 13-year-old and a 5-year-old. They’re at very different stages in their life, but they need their mom, and also they need me to work so that they can do the things that they want to do and play sports and use the computer. So it is always that push and pull. Marlene, you mentioned push and pull, and I immediately think of that amazing monologue in the Barbie movie about women. And it’s true. We can’t be everything to everyone all the time, but we also need to be afforded some grace, and sometimes we’re just not given it.

Maria Town:

Shout out to America Ferrera. And Robin, it does not have to be this way. It does not. And I think one of the things that I’m trying to do at AAPD is really focus on our organizational policies and culture so that our team, including myself, doesn’t have to be in these positions. And it’s something that I’m just constantly working on, and I don’t have children, but I do provide a lot of support for my family. And similar to what Marlene mentioned, I live in DC and my family lives in a different state and so a lot of that caregiving and support is remote. Very recently, my father was very, very sick, and I was his primary caregiver. And there was a moment where I was at the hospital with him, and again, he’s dying at this point. And so I was trying to be in all of his appointments.

But going back to the story I shared at first, because I have a mobility aid and I have a disability that makes my body spastic, a lot of the healthcare providers did not want me to go into the room with him. And they would say things like, “Oh, the exam room isn’t going to be big enough to fit your scooter.” At one point someone said, “Oh, well the wife usually goes back.” And my dad is single, he does not have a wife. And it was a reminder to me of just how much of our care system is just assumed to be done and built and continued by women. And I was constantly worried that my dad’s medical care and healthcare, the quality of it would be impacted because of ableism that was directed at me as his caregiver. And thankfully I don’t think that that happened, but it was just a constant.

And I also want to note, especially in the disability community, I provide a lot of care for friends, and a lot of friends provide care for me, and it’s been tricky. So over the pandemic, I lost ability to put on my shoes by myself, and it stunk because I can literally do everything else I need to do, but when it comes time to put on my shoes, I cannot figure out how to make it work. And so I’ve had friends come over and help me with my shoes, but it’s not enough of a need to qualify for something like personal attendant services. And when I travel now to conferences, I have a pair of shoes that I can slip on my feet, and I now have a running list of disability leaders who have helped me fasten my shoes, because I’ll flag somebody down at a conference and say, “Hey, can you help me?”

Just letting you all know, Marlene, Robin and Michelle, I’m sure one day I will ask you. But I don’t think that people would assume that the president and CEO of a civil rights organization often has to rely on the kindness of strangers to help her put on shoes, but that is a very regular occurrence for me every time I travel for work.

Michelle Bishop:

We got you, Maria.

Maria Town:

Thank you.

Robin Troutman:

Happy to help anytime.

Michelle Bishop:

Totally. Maria, you never once judged me when I’ve been … I can remember this time you and I were on our way into a meeting at the Department of Justice. It is the longest walk ever back to that conference room, you know the one I’m talking about, and I was limping something fierce that day. And you didn’t say a thing, and you didn’t judge, and you didn’t even point out that I probably should have worn more practical footwear when I knew darn well I was limping before I left the house that morning. So I got you. If you ever need a shoe, I got you.

Maria Town:

Thank you all. I really appreciate it.

Michelle Bishop:

Yeah, that one question just opened up more than I think I could have imagined in terms of the weight that we carry every day, but also the ways in which we’re showing up for and supporting each other, which is also really amazing. I think about that a lot these days, especially in this current world of work-from-home and hybrid work, which I think opens up a lot of amazing benefits to our lives and to how we manage work in life, but also comes with maybe some unanticipated side effects.

When everything is a Zoom meeting, they get scheduled back to back to back, as if no one needs a moment in between to do anything else or to catch their breath or to make sure a shout out to Rebecca Coakley and make sure we all ate lunch today, as disabled women often do not do. Or meetings get scheduled real early or real late because everyone’s thinking, “You just got to log into a Zoom and you’re already home and it’s not a big deal.” But who’s got kids at home that needs to switch over to parent duty and can’t necessarily take a late meeting just because it doesn’t mean that they have to run across town on the red line?

Actually Robin and I are on a coalition call together that used to be scheduled for every week very late in the day on a Friday, and Robin is my hero because she was the only person who had the nerve to say, “We can’t keep meeting at this time. My kids are off school. It’s a Friday. They go wild at this time.” And to which I immediately then was emboldened to jump in and say, “I, like Robin’s kids, lose all control after this time on a Friday as well.” And we were able to get that moved because it was totally impractical. I’m sure you remember that, Robin.

Robin Troutman:

I sure do. That was. Just even thinking about the pandemic and just I don’t understand how during the pandemic, because I guess we all were doing it, we just had that grace that we mentioned earlier. We allowed for grace. I was on a call with, if you remember early in the pandemic, the administration on community living. And my now five-year-old, who was only less than two, comes up to me to tell me he has poop on his hands in full volume to everyone at ACL. Just had to be like, “You got to wait a minute now because I have to go clean something.” But I feel like it’s only been four years. Despite what everyone is saying, what people are thinking, COVID is still real, and we need to be very aware that it’s not over for the disability community, a lot for the elderly. So we need to remember that just because it works for some, a situation is not going to work for everyone. And we need to be more accessible, more flexible and just more willing to listen and make changes.

Michelle Bishop:

Actually, that, I think, leads nicely to where I wanted to take this conversation to start to wrap us up, which is to say that a lot of our listeners, with the known exception of my mom, if you guys don’t know, it’s a running joke on the podcast that my mom is our only listener. But most of our listeners are staff at P&As that are in NDRN’s network, and we like to have something that they can do about this. If there was one thing they could do right now or how can they lead from where it is that they sit. Even if they’re not, we’ve got a lot of executive directors on the show today, but they may not be in that position of leadership at their organizations. How can they lead from where they sit? What is one thing that they can do right now to support women taking on meaningful leadership roles and coming up in this movement?

Marlene Sallo:

I would say, this is Marlene, we all start from somewhere. So as you said, from where they’re at right now, look to your left, look to your right. If there’s anyone that you can support, do so. If anyone is having a rough day, be kind, step up, try to give them a helping hand. And I always want to be surrounded by women that will say my name in a room when I’m not there in a positive manner. I think that is key to showing support to those in your circle, regardless of whether you’re a young professional or you’re days from retirement or even post-retirement. That’s what I want to be surrounded by. That’s the kind of group that I want to belong to. That’s the community I seek. It’s like we say each other’s name in the room when we’re not there, and it’s always for the positive, and it’s always to lift each other up.

Maria Town:

This is Maria-

Robin Troutman:

This is Robin. I’d like to … oh, sorry.

Maria Town:

I just wanted to shout out Michelle who’s done that at least twice today. So on emails today, Michelle has looped in a member of my team that I thought was copied who wasn’t. Robin, she’s looped in you. Just to shout out our host, Michelle is one of those people who I think really embodies that practice. Marlene, and I think that’s such a good way to be. And I also want to shout out the AAPD team who constantly push me in, again, our organizational culture. And I think if you have a way, even if it’s with your supervisor or another colleague of saying, “Hey, I really need meetings to start at 9:30 because it’s tough for me to be super alert for 8:30 or 9:00 AM,” or “I have to do kid drop-off in the morning. Can our meetings start a little later?”

Even conversations like that amongst colleagues can build towards larger changes in your organization and help you build up a coalition of the willing, folks who you know, you share values with, who will have your back when you want to take it up to the next level or challenge others in positions of power who might be helping to maintain these systems that are built with misogyny embedded in them. So Robin, I’ll pass it to you.

Robin Troutman:

No, thank you, Maria. I actually was going to say the same thing as a thank you to Michelle just because just like you said, she looked around, and she was like, “Wait, there are some women missing in this email thread.” And so thank you, Michelle, for making sure that the people who needed to be represented are represented. But just like my colleagues are saying on this call, one, we have to practice what we preach. We are always being looked at, especially as women, but as women leaders, as women leaders with disabilities. I too have non-apparent disabilities. I don’t necessarily promote myself as that, but I do. So we’re always being scrutinized, so we need to be in public supporting each other, finding who’s missing, who needs to be part of the conversation.

And I’d also really put in a plug for mentorship. You never know who sees you as a mentor, but there are so many young people there and not even young in terms of age, but young to our network and young to advocacy. So take them under your wing, and even if it’s just like a brief coffee conversation or tea, if you don’t drink coffee, or water if you don’t drink tea, it’s taking a few minutes to make somebody feel welcomed and that they are vital to the conversation goes a long way as well to uplifting and supporting.

Michelle Bishop:

This is an audio podcast, so none of you can see me, but I’m cheesing right now. Thank you. Y’all made me feel so good. But yes, it’s important to me and I know it’s important to all of you. Women supporting women is a big part of how I think we all have gotten to where we are and keep it moving even when it’s hard. And I think that that’s really important. And I would say also to our listeners as well, if you are listening to this podcast and you don’t identify as a woman, you are not excluded from this conversation. There is room for allies in every movement. And if you look around in a room and you don’t see any women or women who are in positions of leadership represented, that’s a thing that you can call out or invite other folks into the room.

There are different points in my career, and I bet it’s happened to you all as well, where I am sitting in a meeting and a male colleague has asked a question about something that I was working on or given credit or a project that a woman colleague of mine had actually been working on. And I think anyone in that room can see that, be conscious of it and call it out and take steps to correct it. Anyone can do that and can support women who are coming up in the movement, and I think that’s really important. There are small things.

Marlene started off the conversation today talking about microaggressions, and I think there are small things that we can all do to see those, to be conscious of them and to see them and to acknowledge that they’re there and to do something about those in the spaces that we’re in from the chair in which we sit. So hopefully that inspires some of you. We’ve had some amazing inspirational conversation today about so many things and what each of you are up against, but also where you find strength and support in how you’re getting it done. And I think that’s incredible. I think that’s the message of March is that women rock. At least that’s what I take from it.

We even shouted out the Barbie movie, which I think is very important actually. I think we all know that monologue from the Barbie movie that was referenced and how much it absolutely hit the nail on the head. I know we probably opened up more questions than we answered today, but it’s an ongoing conversation, and it’s an ongoing process. And I’m just so thankful to all of you for joining us and having this conversation with me today. You know I think all of you are incredible. I’m sure all of our listeners know it now as well. But thank you for taking time out of your really busy schedules of juggling all of the things and having this conversation with us. I really appreciate it.

Raquel Rosa:

Well, thank you, Michelle, for hosting a really lively and empowering conversation. As women, we obviously look up to others who are leading this work, and I think we are seeing a legacy being formed before us. So thank you for facilitating that conversation. And I don’t want to put words in your mouth, but I’m sure it was a really special experience for you.

Michelle Bishop:

It was awesome sitting down with those three. I didn’t know how deep the conversation was going to get, but they brought the realness, which I know all three of them, so in retrospect, I should have known they were going to bring the realness. It was so cool to have that conversation. And what you’re saying now is making me think of this conversation I had with a colleague of mine years ago, where we were talking about how when you look at the Civil Rights Movement, there’s so many women in the work, there’s so many of us that work for these organizations, and we were like, “Ten years from now we look around, and none of us are in leadership positions, and none of us are executive directors and CEOs, then we know there’s a problem.” So the fact that it was so easy for us to identify three powerful women who are at the heads of their organizations that are major disability rights organizations to have this conversation, that to me, I just felt really encouraged. So that was so exciting as a way to mark Women’s History Month.

Raquel Rosa:

I love it. And I’m sure that young Michelle at the beginning of her career is very proud of you. I know that Young Raquel is very proud of us. So yay.

Michelle Bishop:

That’s Raquel. Started from the bottom. Now we’re here.

Raquel Rosa:

Yes, yes.

Michelle Bishop:

That might have to suffice as the joke for this month. That might be as good as it gets. I’m realizing now how hard it is to have a joke prepared every month. I don’t think I can pick on Stephanie for this anymore.

Raquel Rosa:

Stephanie, you are missed and we will see you very soon.

Michelle Bishop:

All right, everyone, we hope you enjoyed that episode. As always, you can reach us at podcast@ndrn.org, especially if you have ideas for future topics that you want to hear covered on the podcast. If there’s something that you want us to talk about, guests you want us to have, we would love to hear it. You get to talk now, Jack, you don’t have to just listen. Do you want to let the people know where they can find us on social media?

Jack Rosen:

Thanks, Michelle. And you can follow us at NDRN Advocates on Twitter and Instagram, on Facebook and LinkedIn at the National Disability Rights Network. And you can follow us on TikTok even though we will never post there. Until next time, folks.

 

On this episode of National Disability Radio we sit down with author Jules Sherred, who wrote the cookbook “Crip Up the Kitchen” about how he rediscovered his love of cooking after finding a way to make it accessible. Then we are joined by Natalie Alden from Disability Rights Florida, who speaks about her experiences traveling as a person with a disability. Finally, Stephanie tries a new joke format.

See more of Jules’s writing, including where to purchase “Crip Up the Kitchen” at https://julessherred.com/

Full transcript of this episode is available at https://www.ndrn.org/resource/ndr-december23/

Transcript:

Stephanie Flynt:

Is that our cold open? I thought it had to be longer than 30 seconds.

Michelle Bishop:

Well, welcome back to National Disability Radio, NDR. Woo! Jack, put an applause in there. Woo!

All right, so welcome to our amazing holiday special. Happy holidays, everyone. At this time of year, there’s what, at least 20 different holidays going on? So whatever it is that you celebrate, happy holidays. I am one-third of your hosting team, Michelle Bishop. I’m the Voter Access and Engagement Manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, Public Policy Analyst at NDRN, and I’m also one of your co-hosts. And you know what I can’t stand? The “All I Want for Christmas Is You” song by Mariah Carey. If I have to hear that song one more time…

Michelle Bishop:

Stephanie coming in hot. How could you say that? It’s a classic!

Stephanie Flynt:

The people need to know how I feel.

Michelle Bishop:

I don’t know that they do. Oh, no.

Stephanie Flynt:

Yes, they do.

Michelle Bishop:

Do not send hate mail to podcast@NDRN.org, please. But while we’re on the topic, I think “Santa Baby” is creepy. Anyway, Raquel, take it away.

Stephanie Flynt:

It is though.

Raquel Rosa:

Hey, everyone. This is Raquel. I am back from being sick. So for the better or worse of it, I no longer sound like Marge Simpson and her sisters. And I’m Team Stephanie; I also don’t like “All I Want for Christmas Is You.” And if you want to send hate mail, the email is raquel.rose@NDRN.org.

Stephanie Flynt:

Yes!

Michelle Bishop:

You know what? That’s it. Cut recording. Cut recording. I’m too upset. I can’t go on because I love that song. Jack, well actually, first, Jack, introduce yourself as our producer and then just go ahead and just cut. This episode’s canceled.

Stephanie Flynt:

No. Tell us your opinion on “All I Want for Christmas Is You,” okay?

Jack Rosen:

My opinion is that I’m Jewish. Hi. Producer Jack Rosen here. And since this will be coming out the week of, wishing all of our listeners a happy Hanukkah.

Michelle Bishop:

Yes, happy Hanukkah to you, Jack, and to all of our listeners. So this is our big holiday special. So what do we have on tap, Jack? Who do we have for this episode?

Jack Rosen:

First up, we have Jules Sherred, who is a cookbook author from Canada. He wrote about how he rediscovered his love of cooking and made the kitchen accessible to him. And Raquel, who is our spotlight story today?

Raquel Rosa:

Well, we are in for a treat. We have Natalie Alden from Disability Rights Florida. She’s going to talk to us about traveling while disabled.

Stephanie Flynt:

Well, first and foremost, Jules, we are super excited to have you on our podcast today. How you doing?

Jules Sherred:

I am doing great and I’m excited to be here too.

Stephanie Flynt:

Awesome, awesome. So I guess my first question for you, especially somebody who also really has a love for cooking as well, something that I’m super passionate about, how did you rediscover your love of cooking?

Jules Sherred:

What happened was for a long time because of how my disabilities progressed, I could not cook. And I used to spend five-plus hours cooking for myself and people that I love. It was my joy and the way I would de-stress. And so I watched a video of another cookbook author using an Instapot and talking about how Instapot had helped her manage cooking with rheumatoid arthritis and parts of my disability mimic rheumatoid arthritis. They’re very similar in how they work as far as pain and inflammatory responses and mobility issues.

And before that, my exposure to the Instapot was people telling me how much I needed one and then 10 minutes of them ranting about all the things that they hated about it. And I’m like, “That’s not a way to get me to use the tool,” but I saw this person actually talk about things. I’m like, “Wow. That, I need.”

So I got one and instantly it revolutionized my cooking and made cooking accessible to me. And then I started to experiment and develop recipes specifically for the Instapot as well as play with other tools that able-bodied people typically poo-poo and act like they are not good tools that are amazing for disability, but no one ever talks about them in terms of an accessibility device. They all just either talk about how they don’t like it or how it makes somebody lazy to use something like this or they don’t understand why this tool exists.

And so just over time, I just began to play with things. And as I developed my blog, Disabled Kitchen and Garden, I wrote a post one day with my favorite accessibility tools in the kitchen, and then some people in the comments left their own things that they use in the kitchen that they use not as prescribed. And an example of that that I talk about in my cookbook is an egg multi-slicer that can also be used to chop things like strawberries and mushrooms with soft skin and stuff like that. That’s how it all started.

Michelle Bishop:

So Jules, I have to ask because I am a spoonie myself, and if our listeners aren’t familiar with the idea of spoonies, we are disabled people for whom chronic pain is a regular part of our disability experience. I know that’s something you talk about in your work. And so I was wondering what does replenishing your spoons look like for you and how is that something that you’re able to prioritize, that kind of self-care, in a society that puts such a heavy emphasis on productivity and some of those really ableist kind of ideals?

Jules Sherred:

My go-to is doing flat happy on the couch with my dogs. Flat happy is not really napping, though it’s supposed to be napping, but it’s just lying down, cuddling with my dogs, watching something on television, doing something that requires absolutely no effort and no thought because my spoons are both fatigue-related and pain-related. And as people who deal with both, they know that is a circular, that’s the word I’m looking for, is a circular process where your pain makes you more fatigued and your fatigue makes your pain levels higher and you have to cut that circuit.

So I do things that require absolutely no effort and just make me happy. But that’s just my number one is just vegging out and doing nothing and feeling great about doing nothing. Even reading requires too much energy to do, so it’s all about things that I can do passively and boost my serotonin and hormone levels.

But to go even further than that, I have a system where I check in with my body three times a day and I base my activities off of what my body is telling me I’m at. So I assess my spoons when I begin my workday, I assess my spoons again at lunchtime, and then I assess them a third time at the end of my workday. And the goal is to have one spoon left at my end of my workday. And if I find that I only have one spoon left at my lunch, then I’m done for the day and I do some type of self-care.

And the reason for that, and I found, and this is how I was able to get over, because for the longest time, I was like, “You have to work, work, work, work, work, work, work. You have to overcome, you have to power through. If you don’t, you’re lazy,” all that ableist messaging, I found that I started to keep a journal of all the times I would stop working when my body told me to and how productive that made me compared to when I would just plow through. And I could see that taking breaks when my body said, “Take a break,” even if I was technically on a time sheet working less hours, I was actually getting more done because I wasn’t making mistakes, I wasn’t spending two hours on a task that would normally be 10 minutes if I was feeling better. And that’s how I’m able to be like, “Wow, so this actually works.”

And then I started to notice that all the self-care time that I would have to take throughout the week equaled one full work day. So I started taking a four-day work week and I’m even more productive now that I’m doing a four-day work week, and I understand that is a privilege that I have because I am self-employed. So my advice is if you have that capacity or that ability to set your own working hours and be flexible, I highly recommend doing less work time because you’ll end up doing more in that time that you are on the clock, so to speak.

Michelle Bishop:

Thank you, Jules, I really appreciate that because cooking, which we’re talking about today, requires spoons. So does entertaining for the holidays, so I love that that’s something that you think about and integrate into your work. And for any of our listeners who maybe aren’t familiar with spoon theory, we can put some links for you in the show notes so you can learn more.

Jack Rosen:

And another thing that cooking can require for some people with disabilities is accessibility. I know that’s something you touched on in your book, so I’m wondering how did you incorporate universal design into this cookbook?

Jules Sherred:

When I was creating the cookbook, I tried my best, with the help of beta readers and other disabled people, talking with them, having conversations about what are their most common points of failure in the cooking process. And so one of the things that I did is I created recipes that address those points of failure and eliminated them. So some examples of that are complete equipment lists because for people who have different types of cognitive dysfunction, the process of trying to figure out what they need to cook together with equipment, that step alone can take them upwards of two hours, and then they forget something and it derails them during the cooking process, and then the food gets ruined, and then it’s a whole snowball effect.

I also simplify the instructions so that there’s no hidden steps because that’s another stumbling point. The way that ingredients are listed is also done with universal design in mind, but there’s also some how to organize your kitchen that consider both mobility issues and cognitive impairment, simple things. And again, this is having to overcome… That’s not the word I wanted to use. That’s a horrible use. Pushing back against those ableist messages that your house needs to be super neat and tidy and everything needs to be put away. And if it’s in sight, it’s cluttered and you’re a bad housekeeper.

The fact is, if you keep something in sight, you’re more likely to use it, you’re going to save spoons. And so I recommend your frequently used utensils and small appliances, you keep those things out at the point of performance. So it’s all about your point of performance, eliminating steps so that you’re not having to work as often, and things like doing food prep so that you’re only having to do it a couple times a month instead of that once-a-week food prep that people espouse that’s a recipe for you just to throw everything in the bin because you have no energy to cook that stuff that’s all chopped in your fridge, completely filled in Tupperware containers.

So those are some examples where I looked at not only the common stumbling blocks, but also the common symptoms of disabilities. So instead of focusing, say on arthritis or MS or ADHD or autism, I asked myself, what are the common symptoms? Pain, fatigue, cognitive dysfunction are the three main ones, but there’s some others that I address in the cookbook as well, and how do we create strategies and techniques to, again, cut that circuit of what causes all those things to flare up, and create strategies to support those rather than frustrate them.

Stephanie Flynt:

Yeah, no, that makes a whole lot of sense and thank you so much for talking about the tools and being able to organize those and those various techniques.

Another thing that I’d love to address is the low expectations portion of it and just being nervous about cooking. When you hear about cooking, and it’s like we were talking about a little bit earlier prior to this episode, it’s such a broad thing. And so when you think of cooking or when some people think of cooking, especially when you’re looking at low expectations that the disability community is subjected to or even just, “What if I can’t do this because of how I’m feeling today?” So I was wondering if you could offer some advice to disabled people who are interested in starting to teach themselves how to cook or even just learning how to cook in general.

Jules Sherred:

My first recommendation is to start small. I’m going to tell a story that has to do with confidence and creating healthy attitudes around food and how this works in Canadian culture, and I think it’s taught to some degree in American culture. But the sooner that you teach a child to cook and give them independence in the kitchen, the more confident they become because they have these little wins of I look at this thing that I made on my own, a sense of accomplishment, and it just boosts your self-esteem. Cooking, having the independence is a huge factor when it comes to mental health and self-esteem because you are winning, you are creating some type of, “Wow, I made this thing.”

So it’s about starting off small and setting yourself up for success and ignoring the things that may dissuade you from doing that. So don’t chop all your vegetables. Buy pre-chopped vegetables from the frozen food section because they’re actually healthier than the vegetables that are in the fresh food section because frozen food is flash frozen at the time of picking; fresh vegetables are dying and losing nutrients as they sit in that area. So you’re actually being kinder to your body by going to the frozen food section and you’re saving money. So that’s a barrier that you can eliminate.

Find recipes for, again, the Instapot, one of the reasons why I love it is because you can just dump a bunch of ingredients in it, put on the lid, set a timer, and you have succeeded in making yourself a delicious meal that has taken you no effort. There’s one recipe in my book that makes a delicious coconut tomato soup and it’s like five minutes. You open up a can of diced tomatoes, you add some onion, and you add a spice mix, you set the lid, and you’re done. Easy-peasy and you’ve made yourself delicious soup. I think there’s like eight servings of it and it’s an easy, quick win.

I think those are the biggest things. Start small and do what you need to do to eliminate the barriers that typically get in the way, and a lot of that for disabled people has to do with how much time it takes to prepare meals. Even something like using a meal kit is overwhelming because sure, all the vegetables are chopped for you, but you still have to stand at the stove for half an hour to one hour. And a lot of us do not have that capacity either because we literally cannot stand and a stove is too high to use in our wheelchair or we have some type of pain condition that prevents us from doing something “that simple.” And I have “that simple” in quotation marks like air quotes because it isn’t that simple.

Stephanie Flynt:

Oh my goodness. Thank you so much for sharing that with us and now I’m really hungry, so also thanks for that. But seriously, that is super, super helpful. And I know for me personally growing up, I definitely found a lot of those things super helpful. When I was a kid, I would make things like salsa in the kitchen and I’m so grateful that my parents encouraged age-appropriate exploration in the kitchen, so I love that you spotlighted that.

Michelle Bishop:

Well, we’ve talked about some pretty serious disability stuff, which is what we tend to do on this podcast, but this is also our holiday special, so we were wondering if you have a favorite holiday recipe you could recommend for us.

Jules Sherred:

In my cookbook is a recipe for air fryer potato scones and mashed potatoes scones. So the reason we typically make them, they’re a Scottish recipe that come from my Scottish heritage on my maternal grandmother’s side, and you make them with leftover mashed potatoes, and leftover mashed potatoes is probably a word up here like, “Jules, that does not exist. What are you talking about?” But you are making mashed potatoes anyways for the holiday meals, so make an extra half a bag or something and intentionally make those leftover mashed potatoes.

And a scone, for people who don’t know because it’s kind of like a biscuit, biscuits are cookies in Canada, they’re a hard cookie. It’s not that scones and biscuits are the same, but they’re very similar. But the thing with this scone is that it’s a dessert scone and you serve it hot fresh out of the oven and you slather it in butter or margarine or whatever you want to slather it in, and then you pour maple syrup, hot, warm maple syrup on top of it, but you could also do jam on top of it is another really good thing.

But it’s a dessert scone and if you wanted, you could also make it savory by if you have any bacon bits left over from either making your stuffing or your Caesar salad or whatever, you can throw some bacon bits and some chives or green onion, the greens on the green onion in there and make a savory version of it. And it is delicious and you really wouldn’t think that you put mashed potatoes in something that is supposed to be served sweet, but trust me, it works.

Michelle Bishop:

I love mashed potatoes. That’s my favorite thing to have at Thanksgiving. So you’re speaking directly to my soul right now, Jules. I will put mashed potatoes in any recipe, so I’ll be sure to go check that out.

Jack Rosen:

Well, Jules, you’ve given us a lot to think about. You’ve also made us a bit hungry or at least speaking for myself there. Thank you.

Michelle Bishop:

Starving. Absolutely starving right now. Definitely about to eat some mashed potatoes. Sorry, Jack. Go on.

Jack Rosen:

No, it’s fine. Thank you for taking the time to meet with us today and where can folks find more of your stuff?

Jules Sherred:

First, it’s been a pleasure being here, and if you want to go to julessherred.com, J-U-L-E-S-S-H-E-R-R-E-D dot com, you can find information to buy my book, Around the World. I also have a blog and there’s links to my social media and my other websites and everything. It’s like my online author hub is the best place to go.

Jack Rosen:

We’ll be sure to include that in the show notes. Thank you so much for joining us today, Jules.

Jules Sherred:

My pleasure.

Raquel Rosa:

All right, everyone. It is holiday time. We’re talking turkey, we’re talking Christmas, we’re talking menorahs. So now we’ve got people who are flying to visit family and friends, and this experience also includes people with disabilities. Today we have a wonderful guest who is going to talk to us about the highways and byways and airways of travel while being disabled.

Hi, Natalie. How’s it going?

Natalie Alden:

It’s going really well, going really well. Looking forward to the holiday season.

Raquel Rosa:

Yes. Can you just tell us who you are, introduce yourself, and a little bit about you?

Natalie Alden:

Of course, my name is Natalie Alden and I am a C5 quadriplegic and I use a power wheelchair. I was actually disabled at the age of 16, so I’ve been in this chair for quite a long time. I currently work at Disability Rights Florida, and I’ve been here 19 years. I primarily work right now on our representative payee program, which includes an extensive amount of travel. In this month alone, I think there’s one week I’ll actually be home. And so it’s a very rewarding job and I’ve actually been able to work on multiple parts of our agency and probably under every single grant that we have.

Raquel Rosa:

Yes, definitely a shining star at Disability Rights Florida. Natalie, just for bonus information, what do you do when you are not saving the world?

Natalie Alden:

Oh, so I am active with a lot of my city entities. I actually sit on the Mayor’s Disability Council. I also worked a lot with adaptive recreational and sports. I love to garden, I love to sew with my sewing machine, and I like to hang out with my five-year-old granddaughter.

Raquel Rosa:

Wonderful. So Natalie, as you mentioned earlier, you travel extensively. I know that you have been in Florida for a very long time and you’ve lived other places as well. I was hoping that you could talk to us a little bit about what your overall travel experience has been like. What method do you prefer? What have been some real successes? What have been some real bummers? Let’s start there.

Natalie Alden:

So I would say that overall, I do prefer to drive. I think that being somebody who has a very severe disability, but being able to have that control over going from point A to point B is my favorite mode of transportation. But of course, you can’t always drive where you want to go unless you want to take four days to get there. So of course, flying is one of those methods that is an essential at some moments in time. I’ve had some really good experiences and I’ve had some really poor experiences.

I used to live in Colorado and I know that back when my oldest son, oh, I think he was just a little over a year old and we had to fly from Colorado to Jacksonville, and driving with a power chair is one thing; driving with a power chair and a baby is way, way out there. I know that you see the accommodations and all of that, and I think knowing your rights show you more on what you can and can’t do.

I know I have a tendency to always gate-check my chair just because of the fact that I want to make sure that I have the most access to it. And when you have an impairment like mine, you are always the first person on the plane. They always want to make sure you’re getting down there first and you have plenty of time to get on there. I’ve traveled with PCA’s and I’ve traveled on my own. There’s good and bad points to that depending on the airline.

I would say in general, my experience with flying is that I’m only going to do it if I absolutely have to. I kind of don’t like to do traveling, especially in the holiday season, on a plane because one, you have more overcrowding, you have more overbooked airlines, and so I would just say be very picky and choosy if you do plan on doing it.

And pre-planning is essential. I think knowing exactly what’s going to happen, talking to the airline, making sure they’re understanding that you use a power wheelchair, of course they’re always going to ask you about the batteries. I always say if you can, have somebody take their phone or a camera and just do a walk around of your chair right prior to getting on the plane so that you have a digital recording of if your chair’s in really good shape or bad shape or whatever because that’s going to help you if something happens to your chair afterwards.

When you first go up to the desk and they look at your chair, some airlines are going to really look at your chair and they are going to write down anything that might be wrong with it if they can actually tell. What you don’t want happening is somebody who doesn’t say anything and they want to argue with you afterwards that maybe the damage was there beforehand. So I think it’s very critical to make sure you are getting some kind of digital record of the condition of your chair.

And then part of it is a preference on whether or not you want to get somebody to actually put you in that Hannibal Lecter chair, as I call it, from your chair to the actual seat. I know that I have PCAs that have traveled with me that simply they will just pick me up like a baby doll and put me all the way in my chair. But of course, if you’re going by yourself, you’re going to utilize the staff, the employees there, and communication is going to be your best thing on trying to get transferred to and from your chair into the seat that they give you.

And I think that’s also why you really want to make sure you’re contacting them ahead of time. I find if you’re really nice to the person who talks to you, even on airlines that don’t have preferred seating, they will really try to get you into a bulkhead seat or something where it’s going to be easier to do that transfer. A spoonful of sugar does go a long, long way.

And so I know that I did have the opportunity to travel all the way to Ireland on vacation one time, and that was a very long flight, and I think it’s very doable for people to be able to do things like that, but in the same breath, you have to be proactive. I’m very lucky because of the fact that I do have a drainage bag, so I didn’t have to worry about actually having to be transferred or for somebody to carry me to the restroom that probably is not going to be accessible enough for me anyways. So I do tell people that if you’re going to be traveling, feel free to bring a urinal or something.

I know one of the things many people with disabilities have a tendency to do is be like, “Well, I don’t want people to see that,” or, “I don’t want to…” I really say, “Embrace your disability, really embrace it.” It doesn’t matter. It’s a part of making it where you can be as independent as possible. And if me bringing a urinal on the plane is what I need, then that’s what I need. But I can go further and further on this, but I will go ahead and put it back to Raquel right now.

Raquel Rosa:

Those are really great tips. I think there’s a lot that I know it’s new to me. I think there’s a lot that is going to be new to a lot of our listeners. Really fantastic tips. I love the gate-checking. I love the video piece. Self-advocacy, holy cow. I mean, I already know about that part, but I’m just saying that how important it is to speak up and keep that accountability present, that’s the secret sauce, Natalie. That’s it.

I’m going to actually pitch it over to Stephanie because I’m sure she’s got a couple of questions for you as well.

Stephanie Flynt:

Yeah, no, absolutely. And Natalie, thank you so much for sharing your experience with us when it comes to traveling with planes, trains, and automobiles and all of the things.

I think that one thing that really has been demonstrated is that when it comes to individuals with disabilities, one size doesn’t fit all when it comes to traveling. Some things may work for some people and some things may work for others. And then also too, when we have these conversations, we’re able to maybe take different tips that other folks have that may work well for us. But yeah, no, thank you so, so much for sharing with us today.

I’m trying to think if I… Sorry, guys. I’m trying to think if I have any questions. I feel kind of bad, but I feel like you’ve covered all of the good things.

I guess maybe a question that I have for you, and I know flying can definitely have its challenges, its difficulties, and you’ve definitely covered some of the challenges and difficulties and how you’ve gone about advocating for yourself when it comes to flying and different things. And I don’t know, I feel like sometimes we need to hear some positive experiences when it comes to traveling through the holidays. I know for me personally, sometimes I get super anxious about what kind of person I’m going to get at TSA. Are they going to try to over-assist me? Are they going to try to test my boundaries?

Just for some context, I think most of our listeners know, I’m a blind person, and so sometimes people might, say for example, try to grab me in the middle of the security line and I’m like, “Hey, can you ask? Don’t grab me. Can you please tell me where exactly you’d like me to go in terms of Z, Y, X and X, Y, Z versus grabbing me and trying to pull me one place and then another, and then another. Let’s treat people with disabilities like humans.”

But I guess this is a long-winded way of saying, could you tell us about one of your positive experiences just so that we can kind of… I don’t know, I think that might be helpful for folks traveling over the holidays who may be anxious about the whole ordeal. Of course, we do have negative experiences. No experience in terms of traveling and flying with a disability is going to be perfect, but that doesn’t mean that you’re always going to have bad experiences all the time, even though we have both types, right?

Natalie Alden:

Yeah, and I definitely can. I know that one of my fondest memories was actually on a Southwest airline when they got me. I was down, I was flying by myself, and they got me on the plane and the steward, he actually kneeled down so that he could see me eye to eye. And he asked me, he’s like, “Hey, I just wanted to have a conversation with you and ask you if anything happened to go wrong in the plane, would it be okay if I just grabbed you,” and he was showing me underneath my arms, “and pulled you off the plane if there happens to be an emergency? I just want to make sure that there’s not going to be an issue with that.” And I was so happy about the fact that you actually had somebody who not only was very good about disability etiquette, didn’t just stand and tower over me, but actually kneeled down to my level and then wanted to have a conversation about what was going to make me comfortable getting me off the plane in an emergency.

Of course I told him, I said, “I really don’t care how you get me off the plane as long as you get me off the plane,” but it’s great when you have people that actually want to take that time to make sure that you’re going to be okay. And that particular steward, I made sure, because he was so accommodating during the whole time on the plane, making sure I was taken care of because I was flying by myself, he wanted to make sure that the landing was going to be okay for me, and I actually made sure that when I got off the plane, I found a manager for Southwest and let them know, “Hey, this particular individual went above and beyond. You’ve got ADA, and then you’ve got what is a human reaction to it. We want something that’s more practical. And he did that.”

And I was told that when you do give them those kudos like that, they do get bonuses, so I was really happy to hear that also.

Stephanie Flynt:

Yeah, absolutely. Absolutely. I think it’s so important that when folks are doing a good job, I definitely try to go out of my way when it comes to airlines for folks that are doing a good job to let those airlines know like, “Hey, this is how it should be done. Keep it up.” The fact that that person asked you versus just assuming, I personally would’ve maybe been startled if someone just randomly came over to me and grabbed me out of my seat, tried to get me off a plane, even if it was an emergency, which could be more startling just depending on the circumstance. But the fact that he was willing to talk with you about your needs, and I think that’s just a perfect demonstration about how one size doesn’t fit all. And thankfully he got that, and I’m totally here for that. That’s awesome.

Natalie Alden:

Well, and I think that as a person with a disability, whether I’ve been traveling alone or whether I’ve been traveling with a PCA or family, I always want to make sure that I’m taking a really good active role in what’s going on. And so when I’m being gate-checked, I’m gate-checking my chair, it ends up where I’m letting the stewardess know, or whoever it is that’s out there, that if they have any problems, that this is my phone number. I try to make sure that my PCA puts my chair into the position that I know is going to be the most helpful for the people who are putting my chair onto the plane. And I think that if you try to make sure you have that good communication back and forth, they are going to make sure that they’re taking care of your property better.

So it’s just one of those things that we kind of think that the people doing stuff for us know how to do something better, and they may not, and we should never be too shy or too much, “Oh, well, they’re doing their job,” to take the time to say, “no, I want to make sure you’re doing it correctly.”

I know I had an instance once when I was on one of the planes and my PCA was like, this is before we took off, my PCA is looking out the window and literally tells me that it looks like they’re trying to rip my chair apart in order to get it on the plane. And I immediately was yelling for the stewardess and letting her know, “Hey, that’s a $35,000 piece of equipment that they’re about to break.” And immediately she said, “Hey, everybody’s walking away from your chair.” So they evidently radioed down very quickly and the guy came all the way up, spoke to me about my chair, and then made sure that it was placed on there properly.

But had I not taken the stance of saying, “Hey, wait a minute, I see what you’re doing and you need to do it better…” We need to educate people one at a time, and we need to make sure that we’re doing it in a way where you’re being respectful because I think if you’re not, then they’re not going to listen to you.

Stephanie Flynt:

Yeah, absolutely. I feel like sometimes we can get lost in the customer service shuffle at that point, especially around the holidays. Airlines definitely deal with a lot of angry people around the holiday, angry people in general, but especially around the holidays. And if we can try… And again, I’m not saying that people with disabilities have to be perfect little advocates all the time. When I have 6:00 AM flights, I better have coffee or I am not the happiest person.

But all that to be said, the littlest things, like educating one person and advocating for yourself to one person who may understand because of your advocacy, later on, the littlest things just they make the biggest differences. And that’s something that I always try to tell people, even if it doesn’t seem like it, educating one person, whether it’s an airline attendant or someone at the grocery store about disability etiquette and doing it in a respectful way, if you absolutely can, that really can make such a big difference for other folks down the road

Natalie Alden:

Well, and I’ll give you a thing. I was actually at a layover in between my destination. Hold on a second.

I was actually at a layover in between destinations, and when I had gotten off the plane and they put me into my power chair, I went over to the new place where I was going to be getting onto the new plane, and I made sure I spoke with somebody at the desk and very much was like, “Hey, I just want to make sure you know that I’m here and please let me know if you need me somewhere certain because I know the airport’s really crazy right now.” And she was like, “Oh, no problem, no problem.”

And then probably maybe like 10, 15 minutes later, she came over to me and told me, “Hey, they’re actually going to be delaying this flight and they’re going to make everybody try to get a different flight. I’m letting you know this first so that you can call this number,” and she gave me a phone number and she said, “and they will go ahead and get you onto the next soonest flight.” And so she gave me that information, told me where to go to call before she announced it to everybody else that was sitting there waiting for the same flight.

I do say being a little bit more respectful and trying to be a little proactive really ended up helping me because I was one of the few people that was able to get on a sooner flight, and I only ended up having to wait approximately 45 minutes where some people were having to wait four and five hours. So it is that education and it is being proactive that can really make it where you go from having a bad time flying to an “I’m okay” flying.

Stephanie Flynt:

Absolutely.

Natalie Alden:

And I know that you guys were talking about other forms of transportation. I will say that I have been able to do the Auto Train on Amtrak from Sanford, Florida up to Lorton, Virginia. I really think that it’s that same thing of being able to talk to someone, telling somebody, “This is my disability, this is what I need for assistance.” They ended up getting me into a sleeper car, and it was really a great, great experience for me.

I will tell you, if you are ever doing that and you are able to get the sleeper car, it is very accessible for someone like me. And like I said, I’m a C5 quad. I’m a full transfer. I will say that whoever is going with you, if you have a PCA, they will have to be able to climb up for the bunk bed. But hey, it was a good experience though.

And so I think though, no matter what you’re doing, you really have to make sure that you’re doing a lot of pre-planning. I know a lot of people that don’t have disabilities don’t have to think about those things, and you’re kind of like, “Hey, this is extra,” but at the end of the day, it can make the difference between you having a very good experience or you having a very bad experience no matter what form of transportation you are having.

Stephanie Flynt:

Absolutely. Definitely can save you a lot of heartache, even though it seems like a lot of stuff that you have to do on the backend. But yeah, I definitely would agree with that.

Oh my goodness. Natalie, thank you so much for sharing with us today about your travel experiences, just everyone getting ready for the holidays and traveling home. I know that I personally found them super insightful, and I’m sure that our listeners have also found those experiences insightful as well. So yeah, thank you so, so much for sharing with us today.

Michelle Bishop:

Wow, that was amazing. I am inspired and so excited for the holidays. Why don’t we go ahead and close out this episode with “All I Want for Christmas Is You” because I’ve heard it’s Stephanie’s favorite song and that’s how I’m going to remember that forever?

Stephanie Flynt:

Nope.

Michelle Bishop:

Oh, wait. Before we get to that Stephanie, do you have a holiday-themed joke for us?

Stephanie Flynt:

I mean, I started thinking about it and since Michelle doesn’t like my jokes as much, I’ve decided to do something different for Christmas and give her an early Christmas present. It’s a haiku!

Michelle Bishop:

It’s a haiku? Oh, this is going to be… All right.

Stephanie Flynt:

All right. Everybody needs to get their Starbucks holiday cups. This is very important, very important PSA.

Michelle Bishop:

I’m so worried. Go on.

Stephanie Flynt:

Caffeine is important, necessary for me to function. Drink coffee now, or go caffeinate now.

Man, I messed up my own haiku. I guess I… Oops, oops. Happy holidays, y’all. Sorry I messed up the haiku. Please don’t send us hate mail for that.

Michelle Bishop:

Podcast@NDRN.org. Jack, how can the people find us on social media?

Jack Rosen:

Log off social media. Spend time with your family.

We’ve got a new name, National Disability Radio! But the hosting team is still here, and we aren’t giving up on the puns. And of course since it’s November we are talking all things voting. NDRN’s Voter Engagement Specialist Monica Wiley joins us on this.

 

Full transcript available at https://www.ndrn.org/resource/ndr-nov23/

 

Michelle Bishop:

All right. Sorry. Are we ready? You ready for us, Jack?

Jack Rosen:

I started recording already.

Michelle Bishop:

All right. Well, snarky, but all right. Okay, I’ll get started. Hello everyone. And Stephanie, can I get a drum roll real quick? Hit me with a drum roll.

Stephanie Flynt:

I don’t have a drum.

Michelle Bishop:

Oh, no.

Stephanie Flynt:

But I have a dog who wags her tail. Okay [inaudible 00:00:17].

Michelle Bishop:

That works. No one can see it.

Stephanie Flynt:

I can’t see it. Okay.

Michelle Bishop:

Okay. We didn’t prepare. We didn’t prepare. Welcome to the new and improved National Disability Radio, NDR.

Stephanie Flynt:

Not to be confused with NPR.

Michelle Bishop:

We are going to get sued for this. So welcome to NDR. I am one of your hosts. Michelle Bishop, the voter access and engagement manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, Public Policy Analyst at NDRN.

Michelle Bishop:

Raquel Rosa is doing a lot better. I’m sure you heard she was sick last time, but her voice is still taking a little bit of a hit. So she’s still on break this month. We miss you, Raquel. Get better. Have all the cough drops or slushies. Eat slushies instead. That sounds better.

Stephanie Flynt:

And hot tea.

Michelle Bishop:

What? Oh, hot tea. That’s right. Hot tea sounds more responsible than a slushy, but one sounds more fun, so you make your choice, Raquel. And of course, I would never, ever forget to introduce our producer and showrunner, Jack Rosen. Jack, introduce yourself to people.

Jack Rosen:

Hi, you all. It is producer Jack Rosen here. Michelle, do you want to tell the people what today’s episode is about?

Michelle Bishop:

So today, we are like one year out from, you might’ve heard this, there’s going to be a little election happening for the president of the United States in 2024. Just that. Nothing huge and really important that we need to start talking about. So today, we’re going to start talking about getting ready for the 2024 election and what you can be doing to make sure you and all of your community are ready to go and vote.

Our guests is actually our very own voter engagement specialist at NDRN, Monica Wiley. Monica has over 15 years of experience as an advisor on disability and organizational and relationship management in the public and private sector, working with state government and federal organizations, including the White House on protecting and advancing the rights of people with disabilities and other represented communities.

She comes to us as someone who is passionate about the vote and working on NDRN’s role in directly outreaching to and engaging all types of voters with disabilities from the broad diverse disability community. So Monica, welcome. Thank you so much for joining us this month. We’re so excited to have you.

Monica Wiley:

Thank you for having me. I’m glad to be here.

Michelle Bishop:

First, to get us started, can you just tell us why are you so passionate about voting?

Monica Wiley:

Well, again, thank you so much for having me. I’m truly delighted to be here and to talk about this. This is very important to me and I thank you for the question.

The reason why I am so passionate about voting, it comes to me in three different ways. And the first reason is I’m a person with a physical disability. I walk with a cane and I use a travel scooter for long distance walking and it was caused by a drunk driver, tractor trailer accident that I was involved in at the age of nine that killed my entire family. And as a result of that, I now have a disability, so I am in the disability community.

When I graduated from college, I was open to or became aware of so many challenges and barriers to people with disabilities in terms of employment, access, socially, everything. And for me, that spoke a lot of volumes to me as a woman, as a Black woman, because as a Black woman, the rights of voting is very, very important to my community and definitely important to women, but especially to my community. And I come from a background where voting, we were disenfranchised by voting because of us being African-Americans in the country.

And so I stand on the shoulders of so many people that have paved the way to make sure that we have voting rights as African-Americans in the community. So that is one reason. So I stand on the shoulders of individuals like my shero, Fannie Lou Hamer, and some of the others that are my shero, Judith Heumann, which I will probably talk about a little bit later. And so many others that have really just made a way for us in terms of one being Black and two being a person with a disability, which leads to my second reason that fuels my passion for voting.

My second reason is the access. There are so many barriers to voting and my community, our community, tends to be… we’re considered as afterthoughts. We’re not considered as individuals that engage in voting, that are knowledgeable about voting. And that is just a misconceived notion about my community. But the reason why that notion is there is because of so many of the barriers to voting.

And so I wake up every day wondering what do I need to do? How can I be a vehicle, a beacon for paving the way for greater access to the voter ballot, but then also making sure that the crosses of the community is educated, that they’re aware, and that they can be a part of the political process, a part of exercising their voice at the voting ballot. So that is the second reason.

Then the third reason is a person that I just mentioned, which is Judith Heumann and how she didn’t let anything stop her. She was a fierce woman, a fierce leader. And I share those same attributes, those same qualities, those same desires, that I’m not going to let anyone, not any institution, any law, or any of these so-called made up policies to prevent me and my community from having the ability to vote.

So those are the three reasons why I am so passionate and so dedicated to making sure that we have full access to the voting ballot and especially Blacks and Black individuals with disabilities to make sure that we are educated, we are knowledgeable, and that we’re doing everything that we can to exercise our voice in our vote at the voting ballot.

Jack Rosen:

And Monica, I’m wondering how can the organizations, especially non disability focused organizations, do more to help activate our voters?

Monica Wiley:

I love this question. Thank you for this question. I think it’s several ways and several reasons why we should definitely be partnering and building coalitions outside of our community. Well, for one, if you are a young person with a disability who just graduated from college and is ready to make meaningful impact, meaningful impact and policy, meaningful impact and laws, meaningful impact and community engagement, you may be often wondering, “Well, what do I need to do? How should I start this? What avenues are out here for me to be able to do this?”

I was one of those individuals, and the first thing I would say is that I would recommend, one, that a person with a disability attends events that are not disability focused. So we need to have more of a presence in other types of events, other community engagement events, other community related events. Also connect with individuals and different groups that you are involved in, making sure that you talk about people with disabilities and talk about how it is so important for other organizations to look at us, to invest in us.

And also too, I think one of the things that I tend to use in terms of building that and establishing those bridges and those partnerships and those connections, is making sure that when I am attending different events and when I am talking to individuals, I make sure that they see two things. One is, of course, yes, you do see the disability because mine is physical, of course. But you see the disability and even if you have a non-visible disability, because I believe one in four have non-visible disabilities, make sure that you talk about it, be proud of it. Disability isn’t abnormal, disability is normal. It is very normal. So make sure that they understand that, that they see that.

So one, that they recognize that you are a proud person with the disability, and then secondly, talk about that disability, talk about how you became disabled, whether you were disabled by… it was developmental, or whether it was by tragedy. But then also then make sure that because they’re still wondering, “Okay, well, what can I do?” Or they may not even have that question. They may just be wondering, “Where’s this conversation going?”

And so then that’s when you will want to make sure that you build on some of the commonalities. We’re both at this event, obviously we have an attraction to this type of work or whatever the subject is or whatever the reason for the event is. So build on that and make them see that there’s some commonalities with people with disabilities and those that are non-disabled. But then also let them see the differences, the challenges, the barriers, and appeal to that, so they can understand and really connect with that humanitarian spirit that they have.

And that’s how you build and that’s how you become engaged and vice versa. And then that makes them want to say, “You know what? I didn’t think of that. That makes great sense. And this is a community that we should be partnering with. This is a community that we should be involved with. We do care. You are a part of the population, you’re a part of the voting block, and you should have access and you should have resources, and you should have individuals that want to help build and support this.”

So that’s what I would say would be a great way, is to make sure that you are out there and that you are visible and that you’re seen. Be proud of what your disability is or how you have the disability. Show the differences between that person or your organization and the organization that you represent, but then also show where the commonalities are and then build on that. And if you’re a person that is new to this and it’s something that you want to do, then build on who you are as a person. Show who you are as a person. Show that confidence and that desire. And then again, you make sure that you show that the connections that you have and then also show those differences. And then making sure that from that point, how you can connect to build greater partnership and be more effective.

So that’s what I would say would be the great way to building this and to make those connections and those partnerships. And trust me, when you do that, that opens the door for so many different resources and opportunities. And again, just forming that partnership and building those relationships, because relationships are definitely key.

Stephanie Flynt:

Oh my goodness. Thank you so much, Monica. We definitely appreciate you for giving us so much insight. And honestly, I don’t think I’m alone in the fact that I genuinely wish that I could be like you when I grow up. So I’m going to continue to aim for this goal. But all that to be said, I know that you briefly touched on this in your answer to the previous question, but would love to hear your advice or your insight on individuals who want to take the leap into helping to organize, helping to get individuals with disabilities, and individuals in disabilities who intersect with multi marginalized communities. How can we support people in terms of organizing to help them get out to vote?

Monica Wiley:

I like that. I like that question. Thank you so much Stephanie, and I really, really appreciate your question. I think one is looking at yourself, obviously, you want to be a part of this work, a part of this effort because you recognize that the fabric of voting and making sure that voting is empowering and that it’s effective and it’s why we are here is to exercise that vote and to make sure that we are speaking up for how we want our lives to be governed, how we want to live, and then how we want to make sure that we embrace everyone from different walks of life. And that’s what that’s about. That’s what humanity is about. But I don’t want to veer off because I can tend to veer off and go a little bit into a rabbit hole.

But I think what I would do is, everyone has some type of leadership ability within their selves. And I think that when we look at the world leadership, we automatically think of, “Oh, I need to be CEO of this organization or head of this organization.” And while you may have that aspiration, and that is something that you are looking forward to, I think in the beginning you can be a leader within your own self by showing up and then showing how you are creating a pipeline for others to be able to use that to then build the next set of leaders and the next set of individuals that have a desire to really make meaningful impact in the world, not just in their respective communities, but just in the world, in the country that we live in.

And so what I would typically say is that I would say when you’re attending these events, make sure that you’re talking to individuals that represent different areas within engagement, different areas within nonprofit, different areas within corporate America, and be taking mental notes, take mental notes. And even if you can’t take mental notes, pull out your phone and take some notes and say, “If you don’t mind, I would like to capture some of what we’re saying here because I’m really dedicated to this. This is something that I’m excited about.”

And when you partner with individuals, when you’re connecting with organizations and people, you’re learning from each other. Everyone doesn’t know everything. And so I can benefit from that person, but that person can also benefit from me. That’s a part of building, that’s a part of growing, that’s also a part of just making a pipeline and an avenue for others to be able to use that and build upon it further so that we can, I would say, reestablish love. I think there’s a lack of love in this country, a lack of love just in the world, period. And if we have that desire to really show love to humanity, then what we should be trying to do is look at some of the qualities within ourselves and the desires within ourselves and bring that to some different events.

Make sure that you are connected to individuals outside of your community, to individuals… So for instance, I have good friends that are in the Asian community, good friends that’s in LGBTIQ+ community. I have friends that are Muslims. I have friends that are in various affinity groups. And then within those affinity groups, they’re connected to different sectors. They’re connected to the union, they’re connected to corporate America, they’re connected to sports, they’re connected to the art world.

And so when you are attending these different events, make sure that you connect with individuals at these events, but then also make sure that you’re connected with individuals that represent different areas within these various sectors and within the events that you are attending. And again, make sure that you take some notes, you write down what you’re here, what you can find beneficial, and that may even be appealing to some people.

I’ve done that before myself, and I’ve had a couple of people say, “Well, you’re writing notes as if you’re in school.” And I said, “Well, you know what? Every event that I attend, every conversation I’m in, it is school, because I’m learning from you and you’re learning from me and that is the best way that we can do… the best way that we can forge a relationship and a partnership and build on this to make an impact for individuals, and make an impact in the world, and make an impact in voting and the work that we do, and the work that we aspire to do.”

So that’s the recommendations that I would give anybody, is to make sure that you are always willing to learn. You’re always open-minded, always willing to learn, be confident and comfortable with what you bring to the table. Even if you don’t have as much experience as everyone else, you have experiences, you have life experiences, you have experiences from college, you have experiences from your friends, you have experiences from… I don’t know if you go to church, from your church, you have something to bring that they can benefit from and you could benefit from.

So build on that and make sure that you are connecting with individuals that represent various positions within various sectors and within community engagement. So I hope that answers your question.

Michelle Bishop:

Monica. Oh my gosh. We appreciate so much your expertise, your fiery personality and your passion for these issues and for the vote, it’s amazing. We are about a year out from this election. I’m already feeling inspired. I echo Stephanie’s thoughts that I want to be you when I grow up. Although I think we all agree at this point. It is unlikely that I’m ever going to grow up, but I still strive for it every day.

Monica, thank you so much for joining us and I bet we’re going to bother you again before this year is out to come talk to us about the election.

Monica Wiley:

No. Thank you. It is been my pleasure. This has been very rewarding. This is something that I love to talk about. As you are aware, I wake up every day wondering, what can I do? What do I need to be doing? What are some of the qualities within myself that I am not utilizing that I should be utilizing to make this impact for my community, for the cross disability community, even for my peers, for the people that I work for, the organization that I work for? What do I need to be doing? And how can that translate into something that’s meaningful and impactful?

So thank you so much for having me. I’ve enjoyed this. I look forward to coming back and I appreciate this. So thank you very much.

Michelle Bishop:

Thanks so much, Monica. Get back to saving the world. And while you do that, we’ll be doing something equally as important. Stephanie, do you have a joke for us this month?

Stephanie Flynt:

I always have a joke, although I really didn’t want to derail us with it. I don’t want to derail us. I don’t want us to get off track.

Michelle Bishop:

This is train puns, isn’t it? Are you doing train puns? I’m so worried about this joke.

Stephanie Flynt:

I don’t know, I don’t know, but I’m trying not to leave the station, if you know what I’m saying, but-

Michelle Bishop:

Oh no. All right.

Stephanie Flynt:

I don’t know if I have a joke this month, but I have more of a question.

Michelle Bishop:

Okay, I’m ready. Jack, are you ready?

Stephanie Flynt:

How do trains indicate when they’re sick?

Jack Rosen:

I don’t know. How?

Michelle Bishop:

Does that have something to do with the choo-choo noise?

Stephanie Flynt:

A choo-choo!

Michelle Bishop:

Oh no. Oh, how many in a row is this that I’ve gotten?

Stephanie Flynt:

I don’t know, but I’ve been doing train puns all week, so you all pray for Jack and Michelle and everyone else at NDRN. They’ve been having to deal with my train puns.

Michelle Bishop:

We had one conversation about trains and we’ve been hearing train puns all week. It is true. And I’m pretty sure I’ve gotten five of these in a row now. I’m going to have to talk to my therapist about that, so.

Stephanie Flynt:

So I’m sorry about the way I’m conducting myself these days. I’m done.

Michelle Bishop:

It just never runs out. Jack, tell the people [inaudible 00:19:41]-

Stephanie Flynt:

Keep chugging along. Okay, I’m done now.

Michelle Bishop:

Tell the people where they can find us on social media.

Jack Rosen:

You can follow us on Twitter, Instagram, Facebook, and LinkedIn, and also Threads, I guess. I did post there the other day, so you can follow us there and you can email us @podcastatndrn.org. Until next time, folks-

Michelle Bishop:

And Threads is totally a thing that I know exists because I’m hip.

Stephanie Flynt:

I’m here for that.

Jack Rosen:

We’re still not on TikTok though. See you.

We open up the vault to revisit guest host Amy Scherer’s previous interview with Liz Weintraub, where Liz discussed her journey from a sheltered workshop to a Senior Advocacy Specialist on the Public Policy team at the Association of University Centers on Disabilities. Then, we go back to the future, as Stephanie tells Jack and Michelle about White Cane Awareness Day.

Check out Liz’s video series Tuesdays with Liz https://www.youtube.com/playlist?list=PLEHWL7i0kECV8GSORs56oK7SP7GXHorOB

Learn more about White Cane Awareness Day https://nfb.org/programs-services/blind-equality-achievement-month/white-cane-awareness-day

Full transcript of this episode is available at https://www.ndrn.org/resource/panda-pod-october-23/ 

 

Michelle Bishop:
Hey everyone. Welcome back to NDRN’s podcast. And we have a really exciting month for you this month. But before we get to all of that goodness, I am Michelle Bishop. I’m the voter access and engagement manager at NDRN and one third of your amazing hosting team.

Stephanie Flynt:
And I’m Stephanie Flint, public policy analyst here at NDRN. And I am, I guess you could say, one fourth because we can’t forget Jack, Michelle. Why do you keep forgetting him?

Michelle Bishop:
No, I mean, why’d you have to steal my thunder? Because I was actually going to introduce him this month. This was going to be the first month, and now it looks like I’m a [inaudible 00:00:41].

Stephanie Flynt:
But you forgot Raquel. Raquel is unfortunately not going to be with us this month, but we cannot forget people even if they’re not around.

Michelle Bishop:
Yeah, I was going to.

Stephanie Flynt:
No hosts left behind.

Michelle Bishop:
Don’t send angry emails to podcast@ndrn.org. I didn’t forget about Raquel or Jack. Poor Raquel is out sick this month. Raquel, we love you. Get better.

Stephanie Flynt:
Yes.

Michelle Bishop:
I don’t know if this podcast is going to help you get better, so maybe listen to this when you come back and just eat soup and drink lots of water.

Stephanie Flynt:
Or beverage of choice and food of choice, whatever. Yeah.

Michelle Bishop:
No judgment. This is a judgment-

Stephanie Flynt:
No judgment.

Michelle Bishop:
And then now I was going to introduce our producer, Jack, but Stephanie already put it out there. So hi, Jack. We’re so happy you’re here with us this month. If you want to introduce yourself to the people.

Jack Rosen:
Thank you for the warm welcome. It’s always great to be here. This is producer Jack Rosen, and this month we are going to do things a little differently. We have a throwback episode. Michelle, you want to tell people what it’s about?

Michelle Bishop:
Whoop whoop. Yes. We’re pulling from the vault this month. This month is actually National Disability Employment Awareness Month, one of the most important months of the year. Well, I think November is the most important because that’s election day. But the other most important month of the year is Disability Employment Month. And we actually have an amazing interview we pulled from the vault with Liz Weintraub talking all about disability and employment. So please enjoy.

Jack Rosen:
And if you’ve already heard that one before, because you listened to the podcast on your way to work every day, and we only have 15 episodes, so you’re like, “Wow, I’ve heard that episode literally 50 times.” Don’t worry. We have some new content at the end. Stephanie is going to be telling us all about White Cane Day, so enjoy the episode folks.

Amy Scherer:
Liz, you’re always so willing to help us out in any way that we ask you to, and I really, really appreciate that, so.

Liz Weintraub:
Oh, thank you.

Amy Scherer:
We’re doing this in honor of the National Disability Employment Awareness Month and your journey from going from a shelter workshop to a competitive integrated employment position, and not a lot of people have done that. So you’re a great example that can hopefully be used to help others. But let’s go ahead and start at the beginning.

Liz Weintraub:
Okay.

Amy Scherer:
When you came out of high school, what was the start of your employment journey at that point?

Liz Weintraub:
Okay. I graduated from boarding school for people with intellectual disability. It was actually the best school of my life. And you might be saying why? Because it was not an inclusive environment, the kind of environment that I fight for every day, but it was a school that I felt like I wasn’t bullied and I could have friends and I could have… My friends gave me the respect that I deserve. So it was after I graduated the school, the headmaster, talked to the parents about what the next steps, and they recommended to my parents that I should go into a private institution.

Amy Scherer:
Was that a surprise to you, given that you had a positive experience at the school and had really enjoyed that? Were you expecting the next step to be potentially a private institution?

Liz Weintraub:
No, and I was very upset because I have thought more about this since I graduated. When I graduated, I probably didn’t think anything of it. I was just told to go there and I went there. But since I became an advocate, I have thought a lot about it. I was very upset because my friends from that school who I went to school… Some of my friends were in my classes. Some of them I lived with. They all went to college. They went to a college program for people with disability. But I went to this private institution, and my parents didn’t think anything about it until I got there. And it was actually kind of interesting because I stayed… After the second day, I called home. I remember calling home and crying and saying to my parents, “I don’t like this.” And they said, “Well, we’re working on something.” And speed up, after about a year, maybe two years, my parents begged me to go home and actually live where I’m living now and where I’m getting the support from the agency that I’m getting right now.

Amy Scherer:
Fantastic. So you pretty much spent about two years, it sounds like, in the institution and-

Liz Weintraub:
No, nine years.

Amy Scherer:
Nine years. Oh, nine years. Okay. Nine years in the institution.

Liz Weintraub:
And if you wait a minute, I’ll tell you why.

Amy Scherer:
Okay, sure.

Liz Weintraub:
I stayed there because even though my parents begged me to come home, I really believe that if I listened to my parents, I would never be who I am today. I would never have been able to speak up for myself. I would never have been able to make my own decisions because I would just do whatever mom and dad wanted me to give. They told me to go to the institution, I went. If they told me to go home, if I listened to them, I would never have learned how to stand up for myself.

Amy Scherer:
That’s a great lesson for all of us to hear. So you, basically, it sounds like, came to the decision on your own outside of what your parents were suggesting that you needed to get in a different situation. Is that correct?

Liz Weintraub:
Yeah.

Amy Scherer:
So I believe you spent some time in a sheltered workshop. Was that while you were in the institution or did that happen after you came out?

Liz Weintraub:
No, when I was living in an institution. I worked in two places. I worked in a place where I did kind of workshop. I mean, worksheets, like math sheets that you would get when you were a kid. And I would do office type of work, and it just was a horrible experience. And then-

Amy Scherer:
Was that in a warehouse situation or were you in an office? Do you remember anything about the environment that you were in when you were doing that?

Liz Weintraub:
Office.

Amy Scherer:
Okay. It was in an office, okay.

Liz Weintraub:
And then I graduated from that program, but I was still in the same institution. And I worked in a shopper’s guide where you had papers. They used stuff for supermarkets that you get at the supermarket.

Amy Scherer:
Right, like the coupons or the flyers, that type of thing?

Liz Weintraub:
Yes. And there was a table, probably more of a typical workshop that we know of where there was probably seven or eight people from the institution and two staff people. It was just an awful experience because it wasn’t in a warehouse like Costco or those kind of stores. Sam’s warehouse for buying things.

Amy Scherer:
And it was not a job that you particularly enjoyed doing, it sounds like.

Liz Weintraub:
No. No.

Amy Scherer:
So tell me what happened next after that in terms of your employment journey.

Liz Weintraub:
Well, I got out of the institution. The way I got out of the workshop and got into a real job because I worked in a library for the rest of the time that I was in the institution. I had a library job outside of the institution that I just adore. It was probably one of the best job, beside my job today, that I had.

Amy Scherer:
And did the people that were working with you at the institution, did they help you get that library job?

Liz Weintraub:
Yes. Yes.

Amy Scherer:
Okay, great.

Liz Weintraub:
But the way I got out of the institution was I faked seizures.

Amy Scherer:
Wow.

Liz Weintraub:
I faked seizures and I would rock and rock and rock and rock and rock, and I would run away when I got upset. I studied people when they had seizures, and I could notice how they were treating… They had seizures, and I don’t mean to make fun of people because I know seizures are really serious things, but that’s the only way I knew that I could have people stop and listen.

Amy Scherer:
Yeah, wow. Did that then lead to a change where you were able to be in a different circumstance?

Liz Weintraub:
Yeah. I still was living in that institution because my parents didn’t think anything else that I should move. And so I went to a conference one day, and a national conference, and two of my best friends who happened, they were talking to some people from Massachusetts. Again, Massachusetts was at that time just starting to work on self-advocacy, and they wanted to hire someone to help them with self-advocacy. Two of my friends, so two people from Massachusetts saw me at this conference and offered me a job. My main job was to work on quality assurance.

Amy Scherer:
Fantastic.

Liz Weintraub:
And they had a survey that they give to people that live… To providers to interview people, and then they did some trainings. And one of the other interesting part of that story is… And I learned this, a very important lesson. Is I kept on saying to people in my interview before I got the job, “I want to be treated just like everyone else.” The only issue in the training department was at the institution. I said to my friend, I said, “Why am I in the institution? Why am I in the institution? I don’t want to be in the institution. I was in the institution. I got out of the institution.” And she said, “You want to be treated just like everyone else, so you’re going to be treated like everyone else. And that’s where the training department was.” I wanted to do more traveling and more seeing the world, and I also wanted to live closer to mom and dad.
I left the job. I went back to the conference where I found my job in Massachusetts. And somebody recommended a job called the Counseling Quality Leadership. And I stayed there for 16 years where I did survey work and I also did some training work, and it was just a great job.

Amy Scherer:
Great. And so that sounds like that built directly on what you had already been doing with the survey work and the quality assurance. Where was this job located that you stayed at for 16 years?

Liz Weintraub:
The headquarter was in Baltimore, but people were all over the country. They wanted me to move from Massachusetts to Baltimore, and as I said, I wanted to live closer to mom and dad. But once I met, at that time, my boyfriend, now my husband, and he was living in the Rockville area where we live today. So I begged and begged and begged my supervisor if I could work from home, just like everyone else. And I would travel when I needed to. And they agreed to. And then I got bored about doing that. So-

Amy Scherer:
Well, 16 years is a long time, so you didn’t get bored too quickly, but then you just got to a point where you were ready to move on to the next step.

Liz Weintraub:
Yeah. And then I found my job at AUCD.

Amy Scherer:
That is great. So tell us a little bit about how you found your job at AUCD.

Liz Weintraub:
AUCD was doing a project, the Self-Advocacy Summit, and AUCD knew that they could not… It was actually a project that ACL was doing about [inaudible 00:15:24], and AUCD knew that they could not do that work without a self-advocate, so they hired me.

Amy Scherer:
That is fantastic. And so what were your job responsibilities when they hired you? What did you have to do each day?

Liz Weintraub:
I was doing part-time work, so I was working for CQO and AUCD, but what I was doing was I helped them set webinars. I went to all the summits. After all the summits were over, I wrote their reports. I helped them write a plain language report. After that was all done, I had a vision of doing a video show.

Amy Scherer:
Well, and let’s talk a little bit about Tuesdays with Liz.

Liz Weintraub:
Tuesdays with Liz has been around for four years. It’s a YouTube show where I make policy in accessible and fun ways for people to understand. And my idea has always been, and it began with my idea, maybe it was a selfish idea, but I think everything begins with you in some ways. When I was little, I sat at the table and the dining room table with all my family, and I never understood what a policy was. I never understood what home community-based services was. I never understood what this was. I never understood what that was. So I wanted to make sure, and when I had the opportunity right after the summit, to develop a YouTube show that people could understand what a policy was so they could go up to the hill, whether it was here in Annapolis and Maryland or in DC to talk about, “Okay, I know what the Able Act is. I know what Transformative Competitive Employment Act is, and I know-”

Amy Scherer:
Exactly.

Liz Weintraub:
Yeah.

Amy Scherer:
So it sounds like your goal, and it sounds like your goal is still today, that you want to make policy accessible and understandable to everybody so that it’s clear what policies exist today and what type of advocacy needs to be done. Is that what your goal is?

Liz Weintraub:
Yes.

Amy Scherer:
Fantastic.

Liz Weintraub:
And we have even done that with our newsletter, called the Disability Policy News. There’s a piece of it that I edit every week for plain language, and some of the words can’t be changed because it’s part of the law. Part of words are the way it is, but that way we have a plain language that we can talk about it.

Amy Scherer:
And can you kind of say why plain language is so important for people who may not know about plain language or why we strive to make things in plain language? Why is that important to you and to others?

Liz Weintraub:
Great question. Thank you. I think plain language is important because it helps people belong to the conversation. It’s help people to understand that they can contribute. And if there’s no plain language… And there’s so many times I’ve gone to a meeting and people talk in big words. I don’t mean 17 letters. I mean big words that I don’t understand. Sometimes there’s 17 letters, but sometimes they’re just big words. And if I can’t understand it, I feel like I want to cry because I’m not part of the conversation and I can’t be part of the conversation and I don’t want to be part of the conversation.

Amy Scherer:
That’s a very important point. And if people want to find Tuesdays with Liz, can they search on YouTube or how would they find your show?

Liz Weintraub:
You can go to aucd.org or you can google Tuesdays with Liz.

Amy Scherer:
Fantastic. And do you actually have input into the people that you’re going to interview? Do you have to come up with the questions?

Liz Weintraub:
Yes, yes. How we do it is that the team of us, the director of policy, the producer, and myself. And that’s why we need to wait for the producer. But as I said, we’re still doing past episodes, mostly on voting, because voting is important these days.

Amy Scherer:
Absolutely.

Liz Weintraub:
We come up with who we think would be good people to interview, whether it’s a topic that is in the news, whether it’s a topic that AUCD is working on, or whether it’s just a topic that I think that people might be interested in.

Amy Scherer:
That sounds fantastic. And is that sort of the main part of your job now at AUCD as well as helping to make sure the documents are in plain language like we talked about? Is that in the podcast, your two main responsibilities at this point?

Liz Weintraub:
Yes. And I should say the questions are all probably 90% my ideas because it’s what I’m interested in. And sometimes my supervisor, the director of public policy, Rylin Rodgers, will suggest things.

Amy Scherer:
Great. Great. Do you have any particular accommodations for your disability when you’re working at AUCD? Do they set things up in a different way, or is there anything that makes it easier for you to be able to do your job well that you can share?

Liz Weintraub:
Well, I think we have tried a voice recognition for me to learn how to type faster because I know that my mother would be rolling in her grave, but I still type like a hand pack typist. It’s just hard for me to use two hands. It’s really important that I feel very supported in my job. And I’ll give you example, and this is so wonderful. AUCD has changed emails, servers, and I don’t understand what it’s called. But anyway, and I got frustrated. I didn’t know how to work things. I didn’t know what it looked like. And I got scared. And the web person at work walked me through it, and it was just wonderful. And now, I’m happy and I can do things myself. And yes, it’s nice to know that I have a [inaudible 00:23:31] with my husband.

Amy Scherer:
And the other thing that seems to run through your story as you have recounted it to us today, is that you’ve had good communication with your supervisors.

Liz Weintraub:
Even people above your supervisor. If there’s a problem with your supervisor, and this has never happened to me, but if I ever had a problem with my supervisor, people have often… People have said to all of us, “You can talk to the ED of AUCD.” Because I could have a problem with my supervisor. I think it’s also important that I don’t… People with disability need to be accountable for their job and what they say and they do. And if we mess up, okay, we mess up, but we can’t say, “Oh yeah, you’re a person with a disability. We’ll overlook that.”

Amy Scherer:
That is a very important point. Very important.

Liz Weintraub:
Treat me just like everyone else, like me going into the institution. Did I like going into the institution? No, but that’s where the training department was and that’s how being treated just like everyone else. And then the other thing I’ll say is about giving me real work to do, not busy work I’m doing at AUCD. I’m doing real work. I’m contributing. I think I basically said it, but I’ll say it to us. Nothing about us without us. And that means if there’s something involving me or my friends, I should be at that table. Not me personally. Well, maybe me personally-

Amy Scherer:
That’d be fine too.

Liz Weintraub:
Yeah. But other people? And then all means that we all need to be included.

Amy Scherer:
That is perfect way to end this conversation. I really enjoyed spending the time with you today, Liz, and I’m so glad that we’re able to share your story as widely as possible.

Liz Weintraub:
Okay, thank you. Be safe and happy and play enough. Goodbye.

Jack Rosen:
Oh, wow. That was such a great episode with Liz. Interesting to listen to some of the podcasts before I became the producer with the old hosting team.

Michelle Bishop:
I was still here, actually. I’m pretty sure I’m the only person who is an OG from the old podcast, but we remain huge fans of Liz Weintraub. Liz, thank you so much.

Jack Rosen:
Producers note. That was actually not the old hosting team. It was staff attorney, Amy Sheer. Amy, thank you for doing our work this month. All right, back to the show.

Amy Scherer:
Yes, absolutely. Absolutely. It’s always really good to kind of listen back on different perspectives and especially around this time of year when it comes to celebrating in deem, as a lot of people call it. So yeah, definitely a really good interview that of course offers different perspectives. And Liz is just such an incredible human. I feel like we learn something new every single time we chat with her or listen to different stories that she has. And so definitely love. I’m so glad that you guys got to hear her perspective this month and some of you getting to hear that as an encore this month.

Michelle Bishop:
Things we’ve learned so far in this episode, we are Liz Weintraub fan girls, and cool kids call it envying. Okay. So Stephanie, take it away and tell us what exactly is White Cane Day. What do we need to know?

Stephanie Flynt:
Yeah, thank you so much. Super excited to spotlight White Cane Safety Day. So White Cane Safety Day has actually been a thing since October 15th of 1964. There was a joint congressional resolution in 1964, and it was signed by Linda B. Johnson to proclaim that White Cane Safety Day be honored on October 15th to essentially create awareness around the white cane. Now, the white cane, a lot of people see it as a symbol of a blind person, but the way that blind people see it, and maybe I shouldn’t speak for all blind people, right? But I can tell you that the folks in my blind friend group, we all see it as a symbol of independence, right? It’s a way that we are able to go various places. It helps us detect obstacles, it ensures our safety. The first white cane law, believe it or not, blind people were not always “allowed”, quote, unquote, or given the right, rather, to travel on our own.
And the first white cane law was actually passed in the 1930s. And since then, thankfully, all states now have some reiteration of a white cane law that essentially gives blind people the freedom to travel, but also to… Essentially, the white cane law makes it to where motorists must yield to blind pedestrians when it comes to traffic and crossing streets and those types of things. A lot of the time, particularly when it comes to hybrid cars, sometimes it used to be harder to tell. Thankfully, we have passed the Pedestrian Safety Enhancement Act back in 2011 where all cars have to make some sort of noise, including the hybrid ones. But for a while, that definitely came in handy when the cars were supposed to yield to us, so to speak. So all that to be said, we do really see that as a symbol of independence.
It’s been super helpful along the way. And believe it or not, these laws actually also extend to guide dogs. Something that’s not as well known. Some people use different versions of the white cane. Some people have red tips on the bottom. And a lot of people, that’s probably the most customary white cane that you see a white cane with a red tip. Not everybody’s going to have a red tip at the bottom of their white cane. Mine actually does not. So different people use different versions created by different individuals. So there are of course the straight white canes. There are some that fold. There are some that telescope. Just various ones across the board to kind of help individuals get a feel of what they would like to get. And what I mean by that is some white canes, at least in my experience, I prefer a lighter white cane.
And the reason that I prefer a cane that’s lighter in my hand is because I feel like I get more feedback. Some people prefer a cane that’s a little bit more heavier or a little bit heavier because canes are more… The argument is that the canes are more durable that way, but everybody kind of has… Different blind people decide to use whatever mobility device is going to best fit or meet their needs rather. Some individuals use canes, some individuals use guide dogs, but either way, the white cane goes beyond just the white cane. It continues to serve as a level of independence to this day. So I know that was kind of rambly, but super, super excited that I’m able to kind of spotlight that.

Michelle Bishop:
Well, very cool, Stephanie, thanks for sharing that with us. And I assume our listeners to the podcast know that you are blind because we do frequently reference Nala, everyone’s favorite service dog, who is a frequent guest, actually, on NDRN social media accounts. So we have to go to this next, don’t we? I think we do. There’s no getting out of this. Stephanie, do you have a joke this month?

Stephanie Flynt:
I do, but I also have a statement first.

Michelle Bishop:
Okay. I’m scared. Yes.

Stephanie Flynt:
So before we started recording, I told Michelle about the origin of my joke and y’all, she said she was so excited. I know it’s not on recording, but it’s here. It happened. Michelle likes my jokes.

Michelle Bishop:
You have no proof. You have no proof that I ever said that. We were not recording, and I will not stand for this kind of slander.

Stephanie Flynt:
Anyway. Okay. This really isn’t as much of a joke as it is a question because I was doing some digging on Google just regarding Halloween stuff in general. And then, you know how Google does these suggested questions that come up? So one of the suggested questions actually was what do witches eat on their bagels? And of course I clicked on it because I’m like, “What does this mean? Is this some new children’s book that I don’t know of?” But anyway, what do y’all think the answer to that question was?

Jack Rosen:
What do witches eat on their bagels?

Stephanie Flynt:
Yes. Also, why are people googling that? Why is it so googled that that question comes up whenever you’re trying to google Halloween costumes for your dog? I don’t understand.

Michelle Bishop:
I’m trying to think of something witchy, but it could also just be scream cheese.

Stephanie Flynt:
It is scream cheese.

Michelle Bishop:
Oh no.

Stephanie Flynt:
Michelle is two for two.

Michelle Bishop:
Oh, I’m starting to know the answer to too many of these. Oh no, there actually was a third I knew the answer to, but I couldn’t unmute in time. So there are three recently that I have known the answer to.

Stephanie Flynt:
I swear I don’t prep Michelle in advance to know the answer to these jokes.

Michelle Bishop:
She doesn’t. And Michelle is always a little disappointed in herself.

Stephanie Flynt:
I don’t know, maybe you’re the one who googled that question and it came up.

Michelle Bishop:
I googled it at the [inaudible 00:33:28] on everyone’s Google.

Stephanie Flynt:
Yes.

Michelle Bishop:
Well, the people did need to know what witches put on their bagels. That’s a given.

Stephanie Flynt:
I mean, team butter on my bagels. I don’t like cream cheese, but that’s just me.

Jack Rosen:
I’m with Stephanie on this one. And if you’d like to keep up with us, you can follow us on Twitter, Facebook, LinkedIn, and Instagram. And you can reach out to the podcast at podcast@ndrn.org. Until next time.

Stephanie Flynt:
It’s X now.

Michelle Bishop:
Happy ending, everyone. Happy Halloween, and Raquel, we miss you. Get better soon.

Stephanie Flynt:
Bye.

 

On this episode, the gang sits down with Julie Salih-Worth to talk about her experiences as a teacher with disabilities and how the education system could do more to meet the needs of students and educators with disabilities alike. Then we’re joined by Allyson Matthews, a student who is advocating for herself in the IEP process, and her mother Melisa.

Full transcript available at https://www.ndrn.org/resource/panda-pod-september-23/

 

Michelle Bishop:

Hey everyone, welcome back to our podcast. I am one of your lovely hosts, Michelle Bishop, Voter Access and Engagement Manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, one of our public policy analysts at NDRN. And I have not had enough coffee this morning, because I managed to spill it all over myself. It’s been one of those days, but things are going to get better.

Michelle Bishop:

Well, everyone prefers that over Stephanie having too much coffee.

Stephanie Flynt:

Except for Stephanie.

Michelle Bishop:

Stephanie with a lot of coffee is a lot. Sorry, Raquel, take it away.

Raquel Rosa:

Hey everyone, this is Raquel, I am the Community Relations Specialist at NDRN, and I am super excited about today’s episode.

Michelle Bishop:

This is a big one, because it’s September, so this is our back to school special, love it. Who are the guests that we have on tap today?

Jack Rosen:

Do I not even get a shout-out anymore? I hosted this… [inaudible 00:00:53] of the interview, I hosted this episode.

Stephanie Flynt:

It was Michelle’s turn.

Michelle Bishop:

The level of beef that is brewing between me and our phenomenal producer, Jack Rosen, rose every single month when I do not introduce him. Our producer, Jack Rosen, please take it away, introduce yourself, and maybe tell the people what we’ve got going for the back to school special episode.

Jack Rosen:

Hi, this is producer Jack Rosen. Thank you for that lovely intro, Michelle. Today our main guest is Julie Salih-Worth, she is a teacher with cerebral palsy. And she spoke to us about her experiences navigating the education system, both as someone who is aspiring to become an educator, and what it’s like for her now as a educator with disabilities, and how we could do more to ensure an inclusive environment for both educators and students alike. And Stephanie, do you want to tell the people about our spotlight story today?

Stephanie Flynt:

Yeah, definitely looking forward to the multiple perspectives that are going to be represented throughout this episode. So today for our spotlight story, we are super excited to have Melisa and Allyson Matthews, they are a mother-daughter duo. Melisa has a background as a teacher of the visually impaired, or as some people refer to them as TBIs. And Allyson is her daughter, who also happens to be blind or low vision, and super excited to hear about the way that her mom helps approach age appropriate self-advocacy with Allyson. Allison is… I want to say she’s around 11 or 12, definitely in the preteen years. So again, super excited to hear about that. And let me tell you, I feel like for me, if I had learned age appropriate self-advocacy prior to high school and started learning younger, I feel like it would’ve been of course more ingrained. And while as an adult, it’s something that of course I have begun to learn, the sooner you start to learn, the more comfortable you get, the more confident you get. And so I’m so excited for you guys to hear about that perspective today.

Michelle Bishop:

If I had learned age appropriate anything in high school, the world would certainly be a better place. So I can’t argue that… Why would I say that publicly? That was a bad idea. Oh, I hope my mom [inaudible 00:03:33].

Stephanie Flynt:

Reverse.

Michelle Bishop:

Mom, go back to not listening to the podcast. Okay, so let’s jump right into it this month, and I will be over here drafting the public apology that I’m going to have to issue to Jack because I refuse to ever acknowledge his contributions to this podcast.

Stephanie Flynt:

Can you sing it or write it in a haiku format?

Michelle Bishop:

First of all, don’t threaten me with a good time. If you want a one woman production of a musical of my apology, I’m ready.

Stephanie Flynt:

Let’s do it next episode.

Michelle Bishop:

All right, let’s get into our first guest this month.

Raquel Rosa:

Okay, let’s get into it everyone, today we are joined by Julie Salih-Worth. Julie, thank you for joining us today.

Julie Salih-Worth:

Thank you for having me, I’m glad to be here.

Raquel Rosa:

So getting started, could you share with us a little bit about yourself?

Julie Salih-Worth:

Yes. So my name is Julie Salih-Worth, and I am an elementary and middle school Spanish teacher. I also teach English as a second language to adult learners. If you count all of the years I’ve been an educator, this is probably year 18, but I’ve been teaching for seven in a classroom. And like I said, I work with elementary and middle school students at a Montessori school here in St. Louis, Missouri. I also have cerebral palsy and a visual impairment, and just a fun fact about me, I am a classically trained musician.

Raquel Rosa:

What instrument do you play?

Julie Salih-Worth:

I play piano. I have not played in quite a while, I’m probably a little rusty at this point. But I play piano and I sing.

Raquel Rosa:

Fantastic, thank you so much.

Jack Rosen:

Funny enough, you and I have talked about this before when you joined us a couple years ago for a get out the vote video. But I was wondering for those who haven’t seen it, or don’t remember since 2020 was so long ago, can you talk to us a bit about some of the barriers that you’ve faced as an educator with a disability?

Julie Salih-Worth:

I could talk for a really long time about that. So I knew since I was 15 years old that I wanted to be a Spanish teacher. I absolutely loved my Spanish class in high school, and decided when I got to college that I would study it, and major in it, and eventually ended up with a degree in Spanish. And so the issue was not that I didn’t know what I was doing, or that I wasn’t good at what I wanted to do, the issue, one of many that I had, is that I was told that because I have a physical disability, a noticeable physical disability, that I would not be able to teach. And I attended a traditional four-year university program, where I studied Spanish and education. I successfully completed the program, made it all the way through. And then when I got to student teaching, which is a requirement in the state of Missouri, first of all, I was placed in a school that was incredibly far away from my house. Which is important to the story, because I don’t drive, I can’t drive, it’s not an option for me.

And so transportation right there is already a barrier to me physically being able to get there. But I worked that out, ended up hiring a driver. And then I was essentially told, after having worked in this particular classroom for six to seven weeks, I was told, “If you have your own classroom within a year, I don’t think…” And this came from the teacher who was supervising me, she said, “I don’t think you’ll be able to manage it.” She said, “You have good relationships with students and good rapport with them, and they listen to you, but you have horrible organizational skills. You don’t know how to plan anything, you look exhausted all the time, and I don’t think you’ll be able to do this.” And quite frankly, those were some very, very crushing words. And I later received a phone call that evening stating that the university had decided to remove me from my student teaching placement, and therefore I would not complete my degree as I had originally planned, I would not complete student teaching, at least not at that point in time.

And I was to come to the university the next morning for a meeting to discuss my options. At which point at said meeting they offered me a minor in education, and told me that that was essentially my option unless I wanted to stay at the university for another year and redo the whole thing again. To which I said, “No, thank you, I don’t understand quite what went wrong here. I mean, there are so many reasons why I can’t stay here another year, but I don’t want to, to be quite honest.”

And so after that happened, first of all, I guess I should say, it took me a long time to really unravel that. And it took me a lot of talking myself out of thinking that I was a horrible teacher, and knowing that I was supposed to be an educator, but I didn’t feel like I was. And I felt like that option had basically been ripped away from me. And I eventually did go back to school, and it worked out. But the message that I want people to take away and to understand, is that that took me 10 years. That took me 10 years to be able to say, “I’m going to do this, and I’m going to try again. And that these voices are not going to tell me what I can and can’t do.”

Jack Rosen:

I think that really speaks to one of the big issues here. I mean, we’ll get to some of the issues with the bureaucracy and the IEP process in a moment. But the truth of the matter is also that there are all these barriers to people with disabilities becoming teachers. So we have students who need accommodations, there is that perspective of people with disabilities on the other side of it can be missing, because it is hard for people with disabilities to become educators. So I’m wondering how we could support people who want to be teachers with disabilities, what can we do to make the education system on the teaching side more inclusive?

Julie Salih-Worth:

So if we think about schools of education and education teacher preparation programs, and how can those programs better cater to educators with disabilities? How can schools better cater to educators with disabilities? We need to realize that we are encountering capable, competent people who come from a culture of experience oppression that has a historical background. Most people never learn about the disability rights movement from what I’ve been able to tell. And if we shift our focus from thinking of disability as this medical condition that needs to be fixed, cured, taken away, removed, “Oh, we’ll just remove the barrier and then the person will be able to function just fine.” Yes, that might be true, but we also need to realize that disability is a strong part of a person’s identity that informs who that person is, and it does inform in positive ways. And I would not be the same teacher if I didn’t have a disability, because I have a different perspective.

I don’t have an able-bodied person’s perspective, I can’t. So when my perspective is different, which it is, then the message that I’m able to deliver to my students is also different. It’s equally as valid, it’s one that they need to hear, it’s one that they need to know, and it’s one that needs to be enfolded into the fabric of our educational system. What I’m trying to say is that the voices of folks with disabilities need to be part of the fold of the pedagogy that makes up how we think about education. I’ve always said when I was in school, and I was in school for a long time, I have two degrees, three certificates, and during my 20 something years there I did not have one teacher with a physical visible disability. So we tell educators in their teacher preparation programs that as they’re working with students, and as they’re planning curriculum, and as they’re envisioning their future classrooms, that they need to think about who their students are.

They need to think about students of color, they need to think about students from different socioeconomic backgrounds, they need to think about A, B, and C. And they need to make sure that those students, those voices, those faces, those experiences are represented in their classrooms, in their literature, in their lessons, in their work that they plan, or take home, or what have you. But I said, “I don’t remember anyone thinking that way for me, I was educated by all able-bodied people.” And so I think what needs to happen is we need to reframe how we look at expectations from the educator side, we need to reframe how we look at the expectations for the teacher prep programs, we need to reframe how we look at disability. Is it just a one class and we’re done, or is it something that we’re going to weave into everything that we think about because we need to make sure that that representation is there?

Jack Rosen:

I think that’s a great way to put it, Julie, that it is not enough to just say, “We support students with disabilities, or we support educators with disabilities.” But it needs to be putting in the actual work to do that.

Raquel Rosa:

So Julie, you have a wealth of experience, and I think it is just beyond all of us to relate to the different perspectives and hats you wear, and the history that you have experienced. So I wanted to touch back on something you were discussing earlier, which is the IEP, and I think there’s a lot to unpack with the IEP process. Specifically for this question, I would like to know… A lot of families, parents, legal guardians, they unfortunately come into these IEP meetings unfortunately with an us versus them kind of tone. And it really isn’t supposed to be that way, we really want to make sure that these are student-centered collaborative discussions where the student is at the center of it, and their success is contingent on everybody’s creativity and buy-in. So I was wondering if you could talk to us about how each member of the IEP team can work together to achieve the ultimate mutual goal of academic, social, and all the other attributes of success that a student has in the classroom.

Julie Salih-Worth:

So first of all, I think that communication is key when you’re working on an IEP team, I think that recognizing your role on that team is also super important. And so one of the things that I want to point out is that parents and legal guardians have a huge seat at the table, and so does the student. And so many times I’ve heard people say… Including teachers that I’ve spoken with, they’ll say, “Well, it could be traumatizing to have the student there, because they won’t understand what we’re talking about, they won’t know how to respond. They are too young, blah, blah, blah, blah.” And I’m like, “Okay, so you’re going to have a meeting about someone, you’re going to talk about a 20-page document that has all kinds of things about that person written in it, and they’re not allowed to be in the meeting, is that okay? Would you like it if someone did that to you?”

And so I think that first of all, the student can have a role, even if they’re five years old, they can go to the meeting, they can introduce themselves, they can present something about themselves that they want that team to know. It could be something that they like, a hobby that they have, it can be something that they recognize is difficult for them that they acknowledge they want to work on. And this can be something that the whole team pulls together on and makes sure that that student, however old they are, is at the table for their meeting, even if it’s just for five minutes. Do they have to be there for the nitty-gritty of all the stuff that might go on for two hours? Probably not, but we need to be able to give them the agency to speak up for themselves at a meeting that determines their educational future in large part, that’s all about them.

And time is of the essence for teachers, there’s never enough of it to get the 99.9 million things that need to be done in a day actually done. And I understand that, because I don’t teach one level I teach 14 different classes in first through eighth grade, I get it. And if I’m asked to be on an IEP team, I will be on the IEP team, and I will make sure that that kid gets their accommodations. That means communicating with the special ed teacher, it means asking questions, never think that any question is stupid. We have a tendency… And education schools breed this, we have a tendency to want to be perfect at everything. We think that everything needs to be just so, we think that the lessons need to be just right, the kids need to be engaged 100% of the time. This needs to happen this way, the paper needs to be cut perfectly, yes and no.

If you don’t know something, ask a question. Don’t be afraid to say, “I don’t know how to work with this student, and I need guidance, and I need support, and I have ideas but I need to know if they are feasible.” Don’t be afraid to say you don’t know. I think that if a team of know-it-alls comes together, and everybody comes to the table as an expert, like, “I know this, and you know this, but you don’t know that.” We are all at this table to serve the interest of the child, we are at this table to collaborate.

We are not at this table to get into a battle about services and supports, and ideas about how to make those happen. Because truth be told, the services and supports and all of that, to be quite frank, are going to go away at some point in the child’s life. And the child may not remember that, but what they might remember is the sense that they got when they felt like they were not included in those meetings, or the traumatized feeling that they felt when they realized that this whole meeting was going on about things that they didn’t even know about because they weren’t invited. And so when everyone comes to the table and there’s that us versus them, the first thing we need to do is establish, who are we there for? We’re there for this child.

Raquel Rosa:

So I was hoping to wrap us up, if you could give us one takeaway what students, families, and educators can do to more strongly advocate on a systemic level, what advice do you have?

Julie Salih-Worth:

I think the most important thing that you can do is choose your issue wisely, know that you’re not going to solve the whole thing overnight, because education is a broken system. So choose your issue wisely and determine, who is with you in that thing? Who feels the same way you do? Who can you talk to about this? Who is having the same problem? Who sees it the same way you do? Or who can offer you a perspective that might compliment yours? And talk to people, form a group, get with each other to figure out how to, for lack of better words, solve the system, because you’re not going to do it alone. And to go back to the question about the IEP and the us versus them mentality, we often come to those meetings feeling like we are fighting a battle all by ourselves, and we’re not.

There’s always someone somewhere who probably has the same issue, or feels the same way, and might be afraid to say that. And so this is the piece of advice that I would give. If you can find that person or group of people and get with them, talk to them, get to know them, and strategize around your issue. Learn about it, learn about its history, learn about who did what and how far has it grown, how far has it come from where it is now, and strategize and make a plan for how to solve it. But recognize that you’re not going to do that by yourself, and it might be a really long process, and that we have to do it in collaboration with others. Small victories count, choose your battles wisely. And don’t be afraid to say, “I don’t know, I don’t get it, and this is really frustrating.”

No one is a warrior all by themselves. In the disability community we are taught that you have to pull yourself up by your bootstraps and you have to figure it out, you have to be independent, you have to do it all by yourself. Okay, no, you don’t. I did not get myself to work this morning, I got in a car with someone who drove that car to work. So independence is really an interdependent thing, we all work together whether we’re solving the problem of how to get to work, or whether we’re solving the problem of bias in test scores. And so if you as an individual can figure out what is that one thing in this broken system that you care strongly enough about to fix, get with your people, get with your community and figure out who they are. And then target, who is the person who can help you get what it is that you want to get done? And realize that might take a while. And keep going and say, “Well, that didn’t work, but what else can we do? Well that didn’t work, what else can we do?”

In the same way that when a child doesn’t understand something the first time, if you are a good educator, you don’t just walk away from that child and say, “Well, oh well, you didn’t get it, so therefore I’m done teaching you.” You work with what you have, and sometimes that means that you build a plan to start over, or you build a plan with more people or more resources. But you never, or try to never think that you are in this broken system all by yourself, groping at straws, trying to figure out which way is up. Because I guarantee that there is someone there who knows something that you may not know, who can piece together along with your knowledge the information that’s missing. So always find your people, focus on whatever your goal is, define it, and then figure out who can get you where it is that you want to go on that educational trajectory. Who can get you there? What is it going to take?

Jack Rosen:

I think that’s so true, Julie, that at the end of the day, we need parents, educators, administrators, and of course these students to come together for what’s in the best interest of students with disabilities. Ideally, it shouldn’t be two sides fighting it out, it should be all of them working together towards the ultimate goal of making sure students with disabilities receive the education they are entitled to.

Julie Salih-Worth:

Exactly.

Jack Rosen:

Thank you so much for coming on today, it was great getting to reconnect with you. And I think you shared a great perspective on what it’s like both as someone who’s been a student with a disability, and now someone who’s an educator with a disability and is fighting for their students. So it was great to have you on and thank you so much for joining us.

Julie Salih-Worth:

Thank you again for having me.

Jack Rosen:

All right, so today on the podcast we have on Melisa and Ally Matthews. Ally is a student who has been advocating for herself in the IEP process, and Melisa is her mother. And we’re going to talk to them about self-advocacy and how students can stand up for themselves and get the accommodations they are entitled to. Thank you for joining us today.

Melisa Matthews:

Thank you for having us.

Jack Rosen:

All right, so our first question, Melisa, could you tell us a bit more about you and Ally’s journey, particularly as it pertains to self-advocacy?

Melisa Matthews:

Absolutely. Ally has oculocutaneous albinism, and we have been advocating… Even when she was in early intervention, we did not have a teacher for visually impaired who supported us. And I was constantly asking that question, whether it was the ability, could she physically do that or not do that, or could she see it or not see what they were asking her to do? So even at a very young age, just asking a lot of questions, and even beginning to model some of that for her. So she’s 11 now, and we continue to navigate advocating not just in schools, but outside of school settings.

Raquel Rosa:

Can you tell us a story when you had to advocate for yourself and how you went about doing that?

Allyson Matthews:

Sure. So one of the first times I had to advocate was in preschool when one of the teachers was sharing a book and reading it out loud, and I couldn’t see the pages or the pictures, so I had to ask to move up and see them. And the teacher said yes, so I was able to now see the book, see the words, and see the pictures.

Raquel Rosa:

Thank you so much. So my next question is for the both of you, I was wondering if you could talk to us about what educators can do to be more open and encouraging about self-advocacy from both a parent perspective and a student perspective.

Melisa Matthews:

Yeah, so absolutely. I think as a parent, it’s very important for you to be able to share successes and struggles that your child is having outside of the classroom. And really looking at your child as a whole, being honest at that IEP table. And also as a parent, but also as an educator, trying to really understand the impact of education and access to education, and especially with all the technology being open. And again, what are they doing outside of the classroom? And as educators sitting in the IEP table, really listening to parents and understanding what that child is like outside of the school. Because outside the classroom is a lot of times just as important as inside the classrooms, understanding how they’re accessing their education, or their social life, or curricular activities, as well as just how are they growing and developing as kids? So I would encourage not only parents, but educators all sitting at the IEP table really looking at from the time the child is awake to the time the child goes to sleep, what occurs during the day? And take all of that.

Jack Rosen:

So I’ve been through the IEP process myself when I was a kid, and I know it can be hard to advocate for yourself. Do you have any advice to other kids and students about how to advocate for themselves and the accommodations they need?

Allyson Matthews:

Yeah, I actually do. When you’re talking [inaudible 00:30:36] say what you need to say. Because sometimes you can get super nervous if the teacher is projecting up on a TV screen and you can’t see it, sometimes people can get super nervous when they’re asking. And just the thing is, you have to really come across straight and just say what you mean.

And also having a plan if that teacher or parent says no, because sometimes I ask for things and people say no. So I have to make sure I have a plan for my mom to figure out, or me to figure out. And when this does happen, when a teacher says no, I usually go home and tell my mom, she emails the school, and we get it solved. Or I might just come to the teacher and say, “Hey, I need this and this.” And they might just fix it then and there. And also when you’re talking to a teacher, make sure you get your point across, because sometimes that can be nerve-racking and that happens to me too. But when that does happen, you just have to get your point across, get it fixed, and then you’re good to go.

Jack Rosen:

I think that’s such good advice, never take no for an answer when advocating for your right. Melisa and Ally, thank you so much for coming on today and sharing your perspective. I think it’s really valuable for teachers, students, and parents alike to hear about just how important self-advocacy is. Thank you for joining us today, it was great having you on.

Allyson Matthews:

You’re welcome.

Michelle Bishop:

Well, thank you to all of our guests, and it is September. So Stephanie, I’m guessing you have a themed back to school joke for us.

Stephanie Flynt:

A themed back to school joke for everyone, it’s actually kind of a triple-decker joke.

Michelle Bishop:

Why are all your jokes so long? But go on.

Stephanie Flynt:

Okay, I couldn’t help it for this one. I literally laughed for half an hour because it’s so funny.

Michelle Bishop:

Oh, no, I’m so worried.

Stephanie Flynt:

So what is a cave student’s favorite class?

Michelle Bishop:

A what student?

Stephanie Flynt:

A cave student.

Michelle Bishop:

A cave?

Stephanie Flynt:

A cave.

Jack Rosen:

A cave student?

Stephanie Flynt:

A cave, C-A-V-E, someone who lives in a cave.

Michelle Bishop:

Jack, do you know a lot about cave people?

Jack Rosen:

I haven’t met any.

Michelle Bishop:

I haven’t either, but we can come up with an answer to this. Okay, a cave person’s favorite class?

Jack Rosen:

Michelle, do you want to just explain what happened?

Michelle Bishop:

Nala the service dog jumped on me. I think Nala doesn’t like it when I insult your jokes.

Stephanie Flynt:

Yeah, she doesn’t, she’s very joke protective.

Michelle Bishop:

All right, we don’t have an answer, we got nothing.

Stephanie Flynt:

Gem class, get it?

Michelle Bishop:

Gem, G-E-M?

Stephanie Flynt:

Yeah, G-E-M.

Jack Rosen:

Because they’re in a cave, so maybe there’s gems there.

Michelle Bishop:

So there’s gemstones because they form in rock.

Stephanie Flynt:

Right. Oh, so speaking of which, did y’all know the kids now apparently have walkout songs? Instead of first day of school photos, they now do walkout songs or whatever.

Michelle Bishop:

I respect it.

Stephanie Flynt:

Yeah, so what do you think this cave student’s favorite [inaudible 00:33:45]?

Michelle Bishop:

Oh, no, this is going into another joke.

Stephanie Flynt:

Of course.

Michelle Bishop:

I wasn’t ready for this.

Jack Rosen:

Okay cave student… Wait, I think I got it.

Stephanie Flynt:

Remember the band.

Michelle Bishop:

The Rolling Stones?

Stephanie Flynt:

Yes, [inaudible 00:34:00].

Michelle Bishop:

Oh, I hate it when I know the answer to these. Oh, what’s happening?

Stephanie Flynt:

I think you need to go and watch some Schoolhouse Rock.

Michelle Bishop:

Wow, she’s doing a victory dance y’all.

Stephanie Flynt:

Of course I am.

Michelle Bishop:

As always, you can reach us at podcast@ndrn.org. Jack, how can they follow us on social media?

Jack Rosen:

You can follow us on Twitter, Facebook, and Instagram at NDRN Advocates, we’re also just National Disability Rights Network on LinkedIn. All right, until next time folks.

Stephanie Flynt:

Isn’t it X now?

Jack Rosen:

We’re not doing that. Until next time.

Coming to you live tomorrow on YouTube, we’re doing a live Election Day special!

 

Transcript:

[Heavy rock music plays in background]

Coming live this Election Day. It’s the National Disability Radio live election special!

Featuring Michelle Bishop, Stephanie Flynt, guide dog Nala, Jake Rosen, maybe Stephanie’s wife, Quinn if Stephanie’s working from home that day. She probably will, traffic’s bad in D.C. during the election.

[Car horn sound effects]

Also potentially featuring Maria Town, Claire Manning and Dewayne not the Rock Johnson.

[Crowd cheering sound effects]

We have not asked them yet, so we don’t know if they’ll be on the pod!

Also featuring Monica Wiley. But we will not have Ken Shiotani. He will not do the podcast.

 

On this episode celebrating National Disability Employment Month we have a double header! First up we interview the team managing the Financial Access, Inclusion & Resources (FAIR) Program at Disability Rights Louisiana. Members of the team include Carolyn LeBrane Tilton, MPH, MDiv, who serves as Program Manager, and Case Managers Alexander Andréson and Lauren Sanchez. They together to support returning citizens efforts to become financially stable. Then for our spotlight story we’re joined by Dr. Josie Badger, of J. Badger Consulting and Peacock Consulting, to discuss the barriers to employment for people with disabilities and how the government could do more to remove those barriers.

 

Learn more about the FAIR Program at https://disabilityrightsla.org/resources/financial-access-inclusion-resources-program-one-page-flyer/

Connect with Dr. Badger at https://jbadgerconsulting.org/

Watch our documentary Accessing Democracy (also available in ASL) at https://youtube.com/playlist?list=PLwF-vB8hlrRAzpd8D1_6rq8L5BgXzWqO3&si=zMyBeNJ1XvqhSY8o

Full transcript of this episode available at https://www.ndrn.org/resource/ndr-oct24/

 

TRANSCRIPT

Stephanie Flynt McEben:

Just stuff some nacho fries down my face.

Michelle Bishop:

So you just shaved what down your face?

Stephanie Flynt McEben:

Nacho fries. I was hungry.

Michelle Bishop:

Nacho fries.

Stephanie Flynt McEben:

The Taco Bell things except I don’t like the cheese sauce. I just like the fries and the weird seasoning on it.

Michelle Bishop:

That sounds like seasoned fries more than nacho fries.

Jack Rosen:

Yeah, I don’t know. If you say nacho fries I feel like it would have a meat to it.

Stephanie Flynt McEben:

No, it’s like Taco Bell cheese sauce, like ballpark Taco Bell cheese sauce, and then the french fries that have the interesting seasoning on them.

Michelle Bishop:

I’m saying Taco Bell come for us, but that’s not nacho fries. That’s just cheese fries.

Jack Rosen:

Michelle, don’t screw this up. We’re trying to get a sponsorship

Michelle Bishop:

From Taco Bell?

Jack Rosen:

Yes.

Michelle Bishop:

They have a specific interest in disability rights.

Stephanie Flynt McEben:

Yes, although-

Jack Rosen:

Well, I can think of one person with a disability who is planning to go to the Taco Bell Cantina later.

Michelle Bishop:

It’s you, isn’t it?

Jack Rosen:

It is me. I was going to get a quesadilla. And if they give us a sponsorship, I’ll say is a fantastic margarita slushy thing.

Michelle Bishop:

That does sound good actually. I take it back Taco Bell. Call those fries whatever you want. Back to National Disability Radio. I am Michelle Bishop, one of your fabulous hosts,

Stephanie Flynt McEben:

And I’m Stephanie Flynt McEben in one of your other fabulous… Oh my gosh, that was bad grammar, hosts in this.

Michelle Bishop:

I’m the least prepared podcast ever. We can’t say our own names now without messing up. And also, I guess, okay, look, so it’s just the two of us right now. So I’m thinking temporarily, temporarily Stephanie, temporarily. What if we called our producer Jack a temporary co-host?

Stephanie Flynt McEben:

A host do sir. A pro host.

Michelle Bishop:

Is Jackie going to talk? Jack, you’re supposed to introduce yourself at that point.

Jack Rosen:

I was kind of letting Stephanie riff it out there. That’s one of my skills as a producer and host is knowing when to “yes and.”

Michelle Bishop:

Jack can’t be a host because it’s like we passed it to him and he didn’t say anything.

Stephanie Flynt McEben:

I know. That makes me so sad. You were going to be the best pro host.

Michelle Bishop:

It was so short-lived.

Jack Rosen:

All right. Hi everyone. It pro host Jack Rosen here. So Michelle, we have a fantastic episode today. We’re doing a bit of a throwback in that we also did a spotlight story. So do you want to tell the people about who we have on?

Michelle Bishop:

First of all, look at us sticking to our original format that we don’t stick to having a spotlight story. We’re crushing it this month because this month is, wait, this is the best because this month is the National Disability Employment Awareness Month. And we are technically right now three employed people with disabilities. So brushing it.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

Yes. Employment for people with Disabilities. This month we have some special guests here for you to talk all about disability employment awareness month and the work that they are doing to get and keep people with disabilities employed.

Jack Rosen:

Thanks Michelle. And on today’s episode we have Lauren Sanchez, Alex Andréson and Carolyn LeBrane Tilton from Disability Rights Louisiana. They run the FAIR program at the Louisiana P&A, which stands for Financial Access Inclusion and Resources Project. They help returning citizens navigate employment and resource barriers to achieving long-term financial stability. But that’s not all. We also have on Josie Badger for our spotlight story. Josie is a consultant who focuses on employment for people with disabilities. So let’s kick things off with our interview.

Michelle Bishop:

Yes, pro host. So the FAIR program is a program of Disability Rights Louisiana, which provides free financial coaching and case management services to formerly incarcerated individuals with disabilities helping them to achieve their employment, financial, and reentry goals. Let’s get into it. If everyone from Louisiana who joined us today, if you don’t mind introducing yourselves for our listeners. And then Carolyn, can you tell us how the FAIR program started?

Carolyn LeBrane Tilton:

Yes, thank you. First of all, I just want to say we are very excited about being given this opportunity to be on this show and to share with everyone what the FAIR program is all about. My name is Carolyn LeBrane Tilton. I am the program manager and I am here with two of the best bestest people in the world who love working for formerly incarcerated individuals and helping them to become all that they can be. I’m with Alexander Andréson, who is a case manager and financial coach and I’m with Lauren Sanchez, who is also a case manager and financial coach.

Alexander Andréson:

So I’m Alexander Andréson like Ms. Carolyn just said. I’ve been in the nonprofit and advocacy realm for the last eight years and my last year and a half has been with Disability Rights Louisiana’s FAIR program. I’m the only member of my immediate family who’s not been directly involved with the criminal justice system. And in my early childhood, I watched my grandfather reenter with disabilities after decades behind bars, witnessing his struggle with reentry firsthand fuels my passion for our target population. I wish he would’ve had access to a program like this.

Lauren Sanchez:

And I am Lauren Sanchez, also a case manager. I’ve been in and out of the criminal justice system for a little over a decade and dealt with my own disabilities for longer than that. So my journey led me here and this position spoke to me in just wanting to give back and let people know that life can get better.

Carolyn LeBrane Tilton:

Now the question that was asked is how did we get started, right?

Michelle Bishop:

Absolutely. Tell us all about it.

Carolyn LeBrane Tilton:

Well, Louisiana has long been known as the incarceration capital of the world, and of course that’s a title that really needs to change. For years we’ve been representing people with disabilities. When I say we, I mean Disability Rights Louisiana. We’ve been representing people who were being abused and neglected inside of our prisons. And so in 2017, our governor signed a package of bills into law that was aimed at significantly reducing the state’s prison population. Now this may sound like great news and it was, but people were coming out of prison and when I say we, I mean Disability Rights Louisiana couldn’t find any disability focused reentry program that we could refer our clients to once they were released.

Carolyn LeBrane Tilton:

We knew that clients with disabilities would need very holistic services to help them rebuild their lives. And so we decided to build our own. So in 2018 when we started building the FAIR program a foundation, the Kessler Foundation actually presented us with a funding opportunity and we saw that as a chance to create the program and bring it to our community. Their support was instrumental. And so that’s how we started. We started as a pilot program in 2018 and we’re now five years old.

Stephanie Flynt McEben:

Yeah no, thank you so much for that information. I know that you briefly touched a little bit on this, but could you speak a little bit more to why FAIR’s strategic focus has been specifically on employment?

Carolyn LeBrane Tilton:

Yes. And this is really a very unique approach, but when we looked at the data, and we did a lot of research on this, we saw that unemployment and poverty were some of the strongest predictors of incarceration and recidivism. And we also realized that those issues disproportionately impacted people with disabilities. So DRLA already had a lot of experience in helping people with disabilities address employment barriers and at the same time address their financial concerns as it related to balancing their disability benefits.

Carolyn LeBrane Tilton:

So it just seemed like a good place to start and to bring those two together. We also saw it as an opportunity to address the gaps in other employment programming. So what happens is that in our work we see repeatedly that there’s so many issues unrelated to the actual jobs that we’re making it hard for our clients. And I’m talking now issues like stable housing, transportation, healthcare, and of course financial matters. So we decided that what we would do is really we wanted to be a very holistic approach, and so we wanted our program to use case management strategies to support the job seekers, but also to bring in the whole financial literacy and financial coaching piece.

Jack Rosen:

So I’m wondering, beyond employment outcomes, why did you decide to also focus on financial stability?

Carolyn LeBrane Tilton:

Well, at the same time that we were looking at all of this, we saw that in our benefits counseling program, the WIPA program, we found that our clients were facing financial issues that went way beyond the disability benefits that they were receiving. And they were asking questions like, how can I get rid of some of this debt that I had? They were asking questions about savings. They were asking questions about setting up bank accounts.

Carolyn LeBrane Tilton:

And again, we could not find any financial coaching programs to refer them to that understood how the intricacies of these benefits go hand in hand with their disabilities. And so what we did was we went to a training program that the National Disability Institute offered, and that training made a strong case for how financial coaching could improve employment outcomes and ultimately the long-term financial pathway of our clients. So pulling all of that together, that’s what significantly influenced the development of the FAIR program.

Michelle Bishop:

Are we back to me?

Jack Rosen:

Yes.

Michelle Bishop:

Y’all, we’re getting through this faster than I thought we would. I was like, there’s no way we’re going to my question already. Okay. Sorry, sorry. Okay, I’m focused. Alex, so what does your day-to-day work look like in your role as a case manager and financial coach?

Alexander Andréson:

My day can vary greatly, but there are two typical scenarios that I deal with. When starting with a new client, I start by preparing a client file and conducting a thorough baseline assessment. Our baseline assessment covers demographics, contact details, housing, employment, education, legal history, health document access, transportation, financial literacy, income and debt and gold. This initial meeting is designed to be conversational to help with that building of trust. We also sign any necessary consent forms.

Alexander Andréson:

Once we understand the client’s situation and aspirations, we create an action plan together. This might involve connecting them to medical care, job training, or helping them start their SSA benefits application. More complex cases may require immediate research, advocacy or referrals like with housing or food crises. We maintain regular check-ins at least twice a month providing financial coaching to enhance their financial knowledge and capability. In general, my role as a fair case manager and financial coach is highly individualized and we adapt to each client’s unique needs. So I’m lucky that every day looks different.

Stephanie Flynt McEben:

Okay. So I have a question actually for Lauren. I know Alex touched a little bit on this, but what are some challenges that your clients have faced as they’ve tried to get employment and financial security? And how have you been able to help them address such challenges?

Lauren Sanchez:

So as Alex said, many of our clients face many different challenges, but specifically what I have seen recently in a lot of my clients has been coming to us while they’re in drug court. Yes, drug court has its benefits of course, but it can also be very difficult and a huge stressor and have barriers especially for clients with disabilities. Some examples of what the clients face is regular reporting court groups, and this can all be within a minute’s notice that they have to attend. A lot of our clients don’t have reliable transportation. Employment. They’re required to work 20 hours a week. This could be difficult in finding second chance employment. Employers willing to accommodate their schedule, clients not being able to do just any job with their disability or able to meet the hours. There’s also the drug court fees. A lot of our clients are just getting on their feet struggling to find employment and this can also be added debt.

Lauren Sanchez:

So what can we do about this? Some of the things that I’ve been able to do is meet with multiple drug court staff, establish a relationship and open a dialogue. It seems they’re very familiar with the re-entry process, but may not necessarily be familiar with re-entry with disabilities. I’ve been able to educate staff, advocate for the client. The client may not be able to work around a large amount of people. There may be over-stimulation, they may need frequent breaks, shorter shifts, they may need those accommodations in order to have success with a decreased income. We’ve been able to get payment plans for the fees.

Lauren Sanchez:

And then even things like medications. There’s been questions about if their medications are medically necessary and I’ve been able to explain what these medications are for with their disabilities and helping them have an understanding. So through our program, we’ve actually been able to assist with developing a foundation for independence and stability while helping the clients stay in compliance and maintaining their freedom. In the end, actually because of our involvement, drug court has asked us to come do a presentation and educate them further, and they’re now actually interested in referring clients and seeking our help for their success.

Jack Rosen:

And Lauren, I’m wondering what kind of challenges you’ve had connecting with your clients?

Lauren Sanchez:

The biggest thing in the beginning seems to be gaining their trust and respect. With their past history, this doesn’t always come easy. Through the re-entry process, they may face a lot of discrimination with disabilities and previous incarceration. So some of the things I’ve been able to do and found successful is first of all, consistency. I do what I say and I say what I do. I always show up, always answer. I was recently told that a client was having a problem with people sticking around and they were so grateful that I was here with that consistency.

Lauren Sanchez:

Using motivational interviewing, this can be like a guiding style of communication involving good listening and direction, and it’s actually based on respect to empower people. Offering a welcoming and comfortable environment. We don’t have your typical office atmosphere, which can be cold and intimidating to some people. We like to refer to our office as the cottage and it has a home-like environment, a lot more welcoming for them. Meeting people where they’re at. Successful looks different for different people, they’re in different phases. Having an individualized plan, no one-size-fits-all and no having judgment, and then sharing my own experience and being able to relate with them seems to go a long way.

Jack Rosen:

I think you touched on so I’d like to follow up a little. The trust piece of it, how do you kind of approach people so that a lot of people, I assume among your clients have had bad experiences with people in positions of authority. So how do you make yourself a little more… How do you take that initial step when let’s say I was a client connecting with you?

Lauren Sanchez:

I would think so initially, when a client comes in, if they come into the office, I’m going to welcome them. I’m going to not sit behind a desk, I’m going to sit in a chair next to them. I’m going to offer them something to drink and just start with a conversation of getting to know them, not necessarily sit there with a pad and paper asking continuous questions and I want to feel like an equal to them because I’ve been in their shoes before and being able to share that helps. Sometimes it’s not even about having them come in but going to them, meeting them in a neutral environment, a place that they feel safe and comfortable.

Michelle Bishop:

Thank you Lauren. I love all of that. It’s just meeting people where they’re at is so important. The whole reason our network exists is to serve the people in our community and we have to be able to meet them where they’re at and go from there. I love that. Alex, can you share a success story that speaks to the impact of the FAIR program?

Alexander Andréson:

Absolutely. So one of my most memorable clients is a lively elderly man who’s reentering society after 40 years at Louisiana State Penitentiary also known as Angola. He faced challenges with medical care, housing, and transportation. We started by applying for low-income senior housing, and after a few months he was approved for an apartment with a great view of New Orleans, the city he grew up in. Next, we worked with his doctor to ensure that he received his electric wheelchair by educating them on Medicaid and Medicare durable medical equipment requirements.

Alexander Andréson:

After a year of struggling with repeated denials, within a month he had his chair thanks to our advocacy. Through financial coaching, we planned his use of SSA back pay. He bought furniture for his new apartment and we discussed the considerations for purchasing a vehicle. After buying his car, he faced a minor accident but had insurance and a covered rental, allowing him to continue working in his caregiving role with a family member. This experience demonstrates the comprehensive support that we offer to help clients to build stable and independent lives.

Stephanie Flynt McEben:

Sorry, my dog nearly stepped on my laptop because that’s where life’s happening. Anyway, Lauren, Alex just shared a success story. I was wondering if you could also share a client success story as well with us.

Lauren Sanchez:

I would love to. So I would actually like to share about a client who came to me. She had been in and out of jail, living with some complex disabilities, and still navigating the justice system of drug court, which I previously spoke of. She was unemployed, not necessarily meeting drug court requirements of work and not being able to pay her fees, which put her freedom and her independence at risk. So she was placed in a work development program. Once she successfully completed this, she was still struggling with finding job placement. We were able to reach out to a contact and help her find a job willing to accommodate her disability and her drug court schedule. She was only able to start one to two days per week and still facing the stress and pressure of being in non-compliance. And really she was ready to give up and quit.

Lauren Sanchez:

But through coaching and encouragement, she was willing to stick with it. So I spoke with her drug court counselor and explained how she was making progress, but her disability was playing a factor in achieving her goal and her process may look longer for her. As a result, drug court was willing to decrease her hours required to work from 20 to 10 and set her up with a payment plan.

Lauren Sanchez:

Without this added stress and with our ongoing support, she started to perform better at work and she’s now working five days a week full-time. And with her increased income, she’s also starting to catch up on those fees I mentioned. In addition to that, by working with one of our other partners, I was able to find out what was needed to reinstate her driver’s license. And now with the increased money, she’s able to do that. We are also looking at setting up a savings plan to meet new goals such as a car for reliable transportation. Just these small changes to accommodate has helped her maintain her freedom and with the start of overcoming one barrier has had a domino effect and opening more opportunities for her.

Jack Rosen:

So I want to hop in here. You mentioned, it brings something to mind. Is debt a common issue for a lot of your clients? I imagine people have been incarcerated, they’ve had bills add up, whether that’s trying to keep their housing or just, I know simply being incarcerated can be an expensive experience.

Lauren Sanchez:

Absolutely. It’s not uncommon. Unfortunately, prior to incarceration, people don’t always make the best choices or have the best judgment and maybe doing whatever they need to do just to get by and that might put them in some poor financial situations causing a load of debt that they’ve acquired. In addition to coming out and having to pay those fines and fees to the court system as well as a lot of times when you’re incarcerated, some of that debt continues to accrue while you’re still in there. So it could be very overwhelming for people who just need to get a job just to get the basics, food, shelter, clothing but then also having that debt in the back of their mind, I need to resolve this in order to acquire some of these long-term larger goals of housing, cars, things like that. So yes, debt is quite common, but with our financial coaching, it’s not impossible to overcome.

Jack Rosen:

So it sounds like that’s some of the goals of the program to have people find employment to help them get out of those debts or at least make those debts manageable. How would you all say that you measure success?

Carolyn LeBrane Tilton:

That’s a great question Jack. You’ve heard a lot of the kinds of things that we do, and of course you’ve heard how our clients experience so many barriers, so many barriers when they get out and come back into the community. So when we look at the word success, success for us isn’t just somebody finding a job or securing housing. Those things are very important of course. But what we do, we wear two hats really. So you heard me say that we’re case managers and we’re financial coaches. So as case managers, that’s what we’re doing. We’re doing information and referral. We’re making sure that if you’re a senior, you get on the list for senior housing. So we’re doing those kinds of things. But we are really focused on stability, long-term progress and of course independence. And so when we look at success, we do look at several key indicators.

Carolyn LeBrane Tilton:

So number one, we do track the employment outcomes. How many of our clients are able to find jobs and not just any job but jobs that are willing to work with them along with their disabilities. We look at the housing piece, we want them to live in a place that is stable. Many of our clients come to us, they’re homeless. And of course, there’s an affordable housing crisis all over the country and it’s dire here in New Orleans. Even the shelter, the low-barrier shelters, sometimes very difficult to get our clients a bed in that shelter because they only have so many beds and there’s so many people in need. So when we’re looking at measuring success, we use the change machine Salesforce platform. And so in that platform, we’re able to not only measure things like their financial health and what this means is what Lauren was talking about, how much debt do you have?

Carolyn LeBrane Tilton:

How can we help you reduce that debt? And then we follow that all the way through to see really sometimes month to month how that debt is being reduced. We also through the change machine platform, and when we are putting on our coaching hat, that’s when we’re talking to our clients about spending plans. We don’t really use the word budget, but we begin to have conversations with them very early on how important it is to know where your dollars are going. And that’s why Lauren talked a lot about trust. We have to gain the client’s trust because we’re going to be asking them some very intimate questions. And those are the kinds of questions that if they were just going to an agency talking to a case manager who’s focused on housing, mental health, things like that, they’re not going to go into the depth that we do.

Carolyn LeBrane Tilton:

And so the primary objective for FAIR is to enhance the employment and financial outcomes about clients. And let me just boast just a little bit. 49% of our clients achieved employment. Our clients reduced debt by a collected total of $79,993. Our clients increased their income by a collected total of $74,253 per month.

Carolyn LeBrane Tilton:

So what we’re doing when we’re coaching our clients, and like I said, we do it simultaneously. When we’re coaching them, we’re helping them to see how they can contribute to the economy and we empower them to not only establish financial security but desire it. And that’s a long way from being homeless to now having hopes and dreams of buying a car, having your own apartment, and those kinds of things are the kinds of conversations, meetings, if you will, that we have with our clients and they begin to open up. And when they share those hopes and dreams, there’s a dollar sign. There’s money attached to hopes and dreams, especially as it relates to cars and an apartment. And so we work very closely with them, we work together, we’re a team. And so our success is based on our support and empowerment of the whole client.

Stephanie Flynt McEben:

Yeah no, thank you so, so much Carolyn. And you totally deserve to humble brag here, totally. This is some absolutely fabulous work and just hearing you guys talk about the experiences that you’ve had with your clients. But on the topic of measuring success, I would love if you could speak a little bit to what has led to the success of the FAIR program? Okay.

Carolyn LeBrane Tilton:

Well, let’s see. FAIR success is really attributed to how we support our clients. And I know what I’m saying sounds simplistic. And we actually had a discussion yesterday as we were preparing for this, and a lot of times the things that we do for our clients, there’s so much in our DNA until we don’t realize that it’s just something that is out of the ordinary. And we had to laugh about that yesterday because we do provide a wide array of services and we tailor those services to each individual’s unique circumstances. So when we are able to glean the kind of information that we get from the clients as we meet with them regularly, we begin to see that once we equip them with skills, resources, and opportunities that they need to succeed, they want to become more and more a part of a community.

Carolyn LeBrane Tilton:

And what that does is of course makes our communities safer, more inclusive and economically stronger. So I would say again, their success lies with how we support our clients and how involved we get with our clients. It’s so much so till we don’t really have something called a graduation from the, because our clients don’t want to leave us. Even though they have gone through all of the action plans that we help them to develop, if something comes up in their lives, they call us first because they know that we’re going to guide them and give them the kind of wisdom that they’re going to need to overcome whatever particular barrier they face at that time.

Lauren Sanchez:

I just wanted to add to that, just like Carolyn said, our clients, they are the hero in their own story. This is their journey. They choose their goals, we just help them reach them and that is their success. And with their success is our success.

Michelle Bishop:

I love it. I’m here for it y’all. I agree with Stephanie. I think you should brag away. You all can’t see me because this is a podcast, so you can’t tell but I am snapping right now when I tell you to brag it out. You all are doing so much work and seeing successes, not surprised, nobody wants to graduate and they don’t want to leave you all. I would imagine with all of this on your plates, it must take a lot of community partnerships to make it work. And I’m wondering what kind of partnerships you’ve developed over time that are making this achievable?

Alexander Andréson:

Absolutely. So really, most of our clients do come to us through referrals from community partnerships. As this program has been around for five years, we work with clients within the community, not within a vacuum. So we collaborate with individuals from other specialized support programs, and we’re building those strong relationships as we go. For every issue our clients face, we connect with experts in the relevant field allowing us to provide the holistic support while also filling those gaps in our expertise. These relationships allow us to focus on what we do best, our financial coaching and case management.

Alexander Andréson:

We have too many community partners to really highlight all of them here in the time that we have but I did want to share some examples of our most effective partnerships. As Lauren mentioned earlier in her success story, we have a community partner that assists with legal challenges including driver’s license reinstatement and fee reductions, which is a huge part of our work. We also collaborate with case managers from the public defender’s office, probation and parole, and other court programs to better understand our client’s legal obligations and restrictions and work with them the best we can. Additionally, we’re involved with our local reentry task force, which enables us to advocate for the broader community of formerly incarcerated people with disabilities by identifying and addressing barriers within reentry services in the city and other organizations. And it also just allows us to connect and network with groups that are doing similar work to us, making sure we’re not doing things twice.

Michelle Bishop:

I think it’s all you, Jack no?

Jack Rosen:

It is. I was just pulling it up.

Michelle Bishop:

Oh sorry. My bad, my bad. Do your thing. See Jack, this is why you’re a producer.

Jack Rosen:

Yeah, and what would you call someone who’s doing an interview?

Michelle Bishop:

This is a longstanding argument y’all between whether or not Jack is the producer or one of the co-hosts. It’s a long running-

Stephanie Flynt McEben:

Yeah, it’s a big running joke for us and we all know who the real host of the podcast is its Nala, my guide dog.

Michelle Bishop:

When he was-

Alexander Andréson:

Has to be included in the joke.

Michelle Bishop:

That’s funny. When he wasn’t ready with the question right away, I was like, now is my moment to slide in there and make a joke about Jack not being a host.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

But also, if Nala keeps unmuting your computer, what I’m hearing that Nala is ready to step up and start co-hosting the podcast with us.

Stephanie Flynt McEben:

Yeah, I’m sorry she made my screen reader talk over a little bit. I was like, “Are you serious?” She was unmuting my computer with her nose and then she went, she’s got an Aflac duck that she’s obsessed with. And so then she went and started literally slamming that against my computer.

Michelle Bishop:

She is trying to unmute. She is ready to be heard.

Stephanie Flynt McEben:

She is, she is. She wants her bark to be heard.

Michelle Bishop:

Sorry, sorry. We can’t control ourselves.

Stephanie Flynt McEben:

Sorry guys.

Michelle Bishop:

Do your thing, Jack. Sorry.

Alex Anderson:

Y’all are good.

Jack Rosen:

So I was wondering what’s the future hold for the FAIR program?

Carolyn LeBrane Tilton:

Well, Jack FAIR is constantly evolving. We’ve been talking about expanding our reach one day, going outside of the New Orleans perhaps to another city in the state. We continue to build upon the partnerships that Alex talked about, and really we are Disability Rights Louisiana, so we continue advocating for the kind of policy changes that’s going to make re-entry smoother for our clients. I’m hopeful about our future because I’ve seen firsthand the resilience and the determination that our clients have and we can’t help but channel that into helping them to just have incredible success. So that’s what drives us to continue to just push for more. What else can we do for, what else do you need? Those kinds of questions we’re always asking our clients. There’s a lot of potential here at jet, there’s a lot of room for growth and I believe we’re just getting started.

Michelle Bishop:

That was incredible. All of you, Carolyn and Alex and Lauren, thank you so much for joining us today. We are super inspired. When you said you were just getting started, you can’t see me, but I’m ready to go. I was ready to jump out of my chair, right? Stephanie and I are moving to Louisiana. Let’s do this. We’re going to help out. Thank you. Thank you so much for sharing with us today. This is such a cool program and we’re so glad we could just help get the word out and maybe other NAs in other states can get something going as well.

Lauren Sanchez:

Thank you so much for having us. This was such a pleasure.

Carolyn LeBrane Tilton:

And it was a lot of fun. Thank you. We enjoyed it.

Alexander Andréson:

And come visit us anytime you want.

Michelle Bishop:

Yes, we’ll be there. Maybe suspiciously close to Mardi Gras, but we’ll be there.

Jack Rosen:

And now for our spotlight story. Hi Josie, thanks so much for joining us today. Do you want to tell the folks listening a little bit about yourself?

Josie Badger:

Yeah, sure. Thank you so much Jack for being here and letting me be a part of this. So my name is Josie Badger and I live in Northwestern Pennsylvania with my husband and four dogs and two kiddos. And I’m a business owner, and so disability employment month is one hot month for my work and my passion, so I’m definitely excited to be here.

Michelle Bishop:

Josie, that’s great. Thank you. Can you just tell us a little bit, get us warmed up here. What motivated you to focus on employment issues?

Josie Badger:

Looking back at my life, looking at the barriers that I’ve faced, so much of that has been from discrimination bias and just an overall lack of supports and services. However, I worked from the whole way through school really to be able to have a good job, to be able to live the life that I wanted. And when I was graduating with my doctorate, I realized that I could not afford to be successful, and let me explain that a little bit further. I am a person with a power wheelchair. I have a ventilator that I use 24/7. I have nurses, I have personal care attendants and under medical assistance, which is Pennsylvania’s Medicaid, if you earn over a thousand to… Let me say that again. If you earn more than $1,200 a month, you’re at risk of losing those benefits and it wasn’t fair. I had my doctorate, I wanted to work, I was prepared to work, and that got under my skin.

Josie Badger:

I’m sure for a lot of the listeners when this would ring true, that when someone tells you you can’t or no, you fight even harder to do it. And so as soon as I graduated, I started J. Badger Consulting and that way I was able to work and keep myself poor enough at that point to be able to still have my waiver services such as nurses. But after that, I had the amazing privilege of becoming a campaign manager for the hashtag I want to work campaign, which is based out of the United Way of Southwestern Pennsylvania.

Josie Badger:

And through that work, I’ve been able to be the manager of this campaign that has gotten three bills unanimously passed that ultimately support employment for folks with disabilities with the most recent being medical assistance for workers with disabilities, workers with job success. And that is a state bill, but it’s really a Medicaid buy-in program that individuals with disabilities who have been working and earning can earn over a $100,000 a year in Pennsylvania and still keep their waiver and Medicaid services. So now I’m able to pursue those opportunities. And with that being said, I feel called to make sure that others can pursue their goals and dreams and be able to use their talents and gifts in our community.

Jack Rosen:

Absolutely. And I think you touched on something so important that a lot of folks in our community are penalized for wanting to succeed, wanting to work that on the one hand, we’re constantly being told that it’s important to be able to provide for ourselves but when we try to, we risk losing services and Medicare that cost more than what a person could reasonably cover working full time. And I think that is one of the perennial barriers to employment for so many folks in our community. With that being said, I’m wondering what are the most frequent issues and concerns you hear about from folks who want to work?

Josie Badger:

Over and over it is the concern of losing benefits, whether that be just basic Medicaid Medicare, whether it be in-home nurses, and unfortunately a lot of individuals are not getting all the information about what is possible, how much they can earn and still have those benefits. A lot of states do have some sort of Medicaid buy-in program for workers with disabilities, but often that information is not shared or even working with the governmental entities, individuals are often wrongly kicked off of benefits and are told they’re no longer eligible but that information is often incorrect.

Michelle Bishop:

Josie, it really struck me when you were talking about the idea of keeping yourself poor enough, that exact phrase of keeping yourself poor enough. I agree with Jack. I know a lot of people who have been forced into that position. Unfortunately, it’s a very real calculation that you’re forced to make. And I think it’s a rude awakening for a lot of us who are raised to believe that achievement and making something out of yourself are core American values. And then people with disabilities grow up and we say, wait a minute, not you. And so I’m wondering what advice you have for folks who are transition age who are going to be coming up against some of these barriers.

Josie Badger:

For those of you who either are transition age, are coming up to be transition age soon, or parents, it is a scary, scary time. And I spent a lot of my time initially really looking at how can I work, what makes sense? So I spent more time working to be able to work than the work itself. And I would highly recommend that you contact a benefits counselor. Vocational rehab will help support that. There’s various funders that will support that. A lot of waivers will pay for it. Explore your options, figure out do you need to jump straight into a full-time career? Can you test something out? And really ideally do it while you’re in high school because there are a lot of work trial benefits that are available for those of you in high school. And so try it out, see what works for you, and then talk to professionals. Don’t try to look the information up on your own totally. It’s confusing. It’s hard to interpret. Yes, there’s good resources but really contact benefits counselor.

Jack Rosen:

Just thinking about transition age folks a bit, parents can play such a role for young people as they enter the job market. And I know we’ve all gotten advice from our loved ones, sometimes good career advice, sometimes bad career advice. Sometimes they think that you can just get a job these days by showing up with a resume and they’ll get you an interview and not ask to leave the premises. But that said, either way, parents play such a role. So I’m wondering if you have any advice for parents and loved ones on how to support their family members as they enter the workforce.

Josie Badger:

Even before an individual is ready to get an official job chores, volunteering, all of that is so critical to start figuring out who you are as a person, what are you good at, what do you like? It starts to develop some responsibility and accountability. And so from a young age, I really believe that all of that work, even if it’s as little as feeding the dogs, which is one of the things that our kids do, can be really important. Talking about financial information management, setting budgets with them. But then as you’re looking at future careers, letting the youth figure stuff out themselves, letting them tour building, setting up job shadowing. And there are entities that do set those up, especially during the month of October. But giving those opportunities for them to discover what they’re good at and what they’re not good at. It is okay to fail, but it’s better to fail earlier in life when you’re not relying on the income of a certain job to have a roof over your head. So do that early and just try everything out as early as possible.

Michelle Bishop:

And try everything early and fail early is great advice. I really love that. So we are, as I’m sure you are too, celebrating the National Disability Employment Awareness Month. Could you bring it all home for us and tell us why this month is important to you?

Josie Badger:

Right or wrong, individual’s sense of importance value is often set on a person’s ability to have a job. And I’m not saying that is right. However, employment gives us not only money, but power. And as Americans, we often place the value of a human on what they can contribute. Employment allows us to be a part of society and a part of the decision makers in our country. And we as people with disabilities who have fought so hard to get through school to maybe live on our own. We have to be at the table to quote Hamilton, “In the room where it happens.” We have to be that and employment is one of those keys to get us in that room. So as we are in October and as we move forward, employment needs to be a focus of not only folks with disabilities, but the businesses that are trying to fill vacancies.

Josie Badger:

The government that’s always trying to find ways to save money. We know that employment is the right thing for our individuals. We know that we as people with disabilities are folks that can and should be contributing. And so employment is just important for everyone on both sides, whether you’re government, whether you’re folks with disabilities, but also if you’re a business, it’s not just the right thing to do because somebody said it was good to do it, it’s the business thing to do. We are good workers, we stay jobs longer than other folks, we work longer hours. And so it makes sense to hire us.

Jack Rosen:

Absolutely. I think you touched on something very important there. This progress can’t happen unless we have a seat at the table. So I guess one thing we should touch on though is, it’s not just us in a vacuum trying to get employment and the opportunities we need, someone needs to hire us, and the expectations of others plays such a role. I was wondering if you can speak on that a little.

Josie Badger:

One of the first that people come up to anyone and say is, “Hi. What’s your name? What do you do?” However, as an individual with the obvious significant disability, that’s not what people might say or ask when they first meet me. It’s often, “Oh, hi, what’s your name? Who are you with?” Assuming that I always need a caregiver. And so I want to ensure that we are changing the cultural narrative of what it means to have a disability in America. And so much of our legislation and government benefits define disability as the inability to work or to make a certain income and that’s not true at all. That has basically pigeonholed us into having only benefits if we are unemployed, not realizing we can do both. We can have a disability and be employed. However, we need those supports to be able to get out of bed and go to work in the first place.

Josie Badger:

And so it shouldn’t be based on how much we earn or our actual ability to hold a job, it should be based on what do we need to live a good life to be able to pursue our jobs, to have a family, and what will it take for us to truly live in the community? And that’s really important for us to change that narrative, both for maybe parents who are not sure how to encourage their child as they grew up into adulthood or government stating that benefits are only for people who are poor. And it is our job as individuals with disabilities to pursue job opportunities, to change that perspective on disability so that as soon as somebody walks up to us, they don’t assume that just because we have a disability, we’re not employed. We need to change that narrative.

Jack Rosen:

Before we let you go, I just wanted to ask you, you recently founded PEACOCK, a non-profit. Do you want to tell the folks a little bit about that?

Josie Badger:

Sure. Sure, I’d love to. The PEACOCK Consulting really comes from the initial work started by J. Badger Consulting, but our hopes with PEACOCK are twofold. One is to help support the leadership and empowerment skills of youth with disabilities and the second part is really to empower the rest of our community, regardless of age in becoming more involved in politics and various parts of change-maker and system change. And often folks are scared of that word like politics or working with legislators, but we’re talking about making sure that individuals with disabilities have that seat at the table and are able to contribute to bills legislation, talking through various barriers that people with disabilities face.

Josie Badger:

And we have found that legislators often do not know the barriers that their own constituents with disabilities face. They don’t understand how certain legislation can detrimentally affect our community. And so a lot of the work is about just getting our voice heard and making sure folks with disabilities know that their voice matters. And so that is what PEACOCK stands for, is making sure that whether you’re a young adult all the way through the rest of your life, your voice matters and letting individuals know where they can share their perspectives to encourage system change.

Jack Rosen:

All right, Josie, thank you so much for coming on today. Is there anywhere people can check out your work?

Josie Badger:

Sure. If you visit jbadgerconsulting.org, you can find about both organizations and you can contact me. I’d love to hear from you.

Michelle Bishop:

Josie. Right on. Thank you so much. This was awesome. I thought we were going to come on this month and just talk about employment a little bit, and instead you were like, “Employment is power.” And I’m so hyped for disability rights right now. So thank you. That was amazing. And we really appreciate your time.

Josie Badger:

Thank you.

Jack Rosen:

All right. There we go. I think that’s the question. I was just trying to get it while I had it. All right. Yeah, I think that’s definitely worth adding.

Michelle Bishop:

Well, thank you so much to all of our guests this month. That was incredible. The work that you do and your stories are amazing. Thank you so much. We love National Disability Employment Awareness Month, and we’ve been really excited for this episode. So thank you to our guests. And I guess it’s getting, I’m stalling, I’m stalling, but it’s getting to the point where I have to say, Stephanie, do you have a joke this month?

Stephanie Flynt McEben:

I always have a joke. Okay. But my question is, you need to pick… Wait, is a pumpkin a fruit or a vegetable? I think it’s a vegetable. All right, because it’s the type of squash. Okay. Pick corn or pumpkin.

Michelle Bishop:

Pumpkin.

Stephanie Flynt McEben:

Okay.

Michelle Bishop:

Pumpkin. I want pumpkin.

Stephanie Flynt McEben:

Okay. All right. So what do you do if a pumpkin gets hurt? I swear this isn’t too violent.

Jack Rosen:

I’m strong.

Michelle Bishop:

I’m thinking about squash.

Stephanie Flynt McEben:

Oh, that’s even better. What do you do if a pumpkin gets squashed? No. What do you do if a pumpkin-

Jack Rosen:

Wait, I think I got it.

Michelle Bishop:

Okay. Go Jack, go.

Jack Rosen:

You give it a pumpkin pack.

Stephanie Flynt McEben:

Yep, that’s right. Ding, ding, ding, ding, ding.

Michelle Bishop:

Not bad.

Stephanie Flynt McEben:

Thank you. Thank you, thank you. Yeah, Quinn told me that one was a good one.

Michelle Bishop:

You know I’m pretty basic for fall, so I’m down with a pumpkin joke.

Stephanie Flynt McEben:

Yes. All the pumpkin things.

Michelle Bishop:

It’s a good fall.

Jack Rosen:

I’m proud of myself and I finally got one.

Michelle Bishop:

Oh wait, is that the first time you got the answer?

Stephanie Flynt McEben:

Yes.

Jack Rosen:

There was one other maybe but I think, yeah, I think that was the first.

Michelle Bishop:

Pro host, pro host.

Stephanie Flynt McEben:

Pro host, pro host.

Michelle Bishop:

Go Jack. See, look at us being nice to you this episode and everything.

Stephanie Flynt McEben:

I’m always nice to him.

Michelle Bishop:

Autumn really is a magical time.

Jack Rosen:

Are we going to just brush over the part where Stephanie’s like “No, that’s a you thing.”

Michelle Bishop:

Yeah. Yeah, we were skipping that. Hey, Jack, why don’t you tell people where they can find us on social media?

Jack Rosen:

Sure, Michelle. You can follow us at NDRN Advocates on Twitter. You can find us on LinkedIn, you can find us on Facebook, you can find us on Instagram. We’re posting there more these days. You can follow us on Threads. It’s the exact same content as the other platforms but for people who use Threads, we even have a TikTok that we don’t and will never use, but you can follow us there. And as always, you can write to us at podcast@ndrn.org and to give one click plug, our documentary, Accessing Democracy is now out. You can find a link to it in the show notes.

Stephanie Flynt McEben:

Woohoo. Go watch the documentary. But until next time, bye.

Things are a bit upside down on this episode. Our producer, Jack Rosen, is one of the guests this time, so David Card is a guest host (he’s guesting as a host, Jack is guesting as a guest). They are joined by Monica Wiley (also a guest) and Michelle Bishop (still a host) to discuss “Accessing Democracy” a documentary short directed by Jack and staring Monica focused on voters with disabilities. The documentary was produced by NDRN and created in partnership with Disability Rights New York.

Register for the world premiere of Accessing Democracy: https://us06web.zoom.us/meeting/register/tZAuc-ugqzksGNBHggVvDOiyio-S29EWgca5#/registration

Full transcript available at: https://www.ndrn.org/resource/ndr-sep24/

 

Michelle Bishop:

I’m so sorry you didn’t get that part.

Jack Rosen:

I wish I did, but I mean, David Hutt would’ve made us censored anyway, so it’s fine and let’s just move on.

Jack Rosen:

We’re doing things very backwards this time, which is why I’m kicking us off. I’m actually the guest this week along with Monica. Michelle is the only permanent host present, and David Card is subbing in as a guest host because I don’t think I can interview myself, though if we do some more experimental podcasts in the future, maybe that’s something we’ll explore. With that, I guess I will throw it back to Michelle since I’m a guest and I’m not supposed to be doing the intro.

Michelle Bishop:

The only thing I heard in all of that is that Jack is not a host on the podcast.

Jack Rosen:

Damn it.

Michelle Bishop:

Victory is mine. All right, so this month we’re actually going to be talking about Accessing Democracy, a brand new short documentary that if NDRN does say so ourselves, is amazing and groundbreaking and about to change the world to make you cry all at the same time. With that said, our guests, would you like to introduce yourselves?

David Card:

Hi everyone. I’m David Card. I’m NDRN’s Deputy Executive Director for External Relations, which means I oversee our communications department. I am super excited to be a co-host today. I’ve been secretly very jealous of everybody who gets to be part of the podcast, so I feel like I’m the weekend host on the Today Show, who gets to fill in for one of the regular hosts during the week. This is really exciting for me.

Monica Wiley:

Thank you. It’s a pleasure to be here today. I am Monica Wiley, the Voter Engagement Specialist at the National Disability Rights Network in the voter department. I had the great pleasure of working on this project with Mr. Jack Rosen as we interviewed quite a few of amazing voters from our community. This project was something that was very, very important, very much needed, and also had some fun moments at times, but definitely a pleasure to be here and to talk about this today.

Jack Rosen:

I am Jack Rosen. Normally I am the producer and a co-host of National Disability Radio, but today I’m here as a guest. I served as director of Accessing Democracy. It was really a privilege to get to work on this project, and I’m glad that NDRN was willing to take the chance on a first-time filmmaker and invest in me and Monica going across the country to interview voters with disabilities.

David Card:

Could you tell us a little bit more about this project and what its message is?

Jack Rosen:

It’s a documentary short focused on voters in our community and the power of our votes and the issues that we wish those seeking office were addressing. Close to a year ago, we were trying to come up with ways to get our community excited about the upcoming presidential election. Marlene Sallo, our executive director, half-jokingly, suggested that we do a buddy comedy of me and Monica going around the country, interviewing the candidates running for president. We at first decided to actually pursue that. We reached out to all of the people running to be the next commander-in-chief.

Jack Rosen:

The truth of the matter is, we did not hear back from a single one. What we decided to do was instead focus more on the voters in our community because the voters in our community are rarely heard. We occasionally get a few news articles every cycle about these voters with disabilities went to their polling place and found out it was inaccessible or their absentee ballots were never sent out. We always hear about the barriers impacting people in our community, but we don’t hear what voters in our community want. We don’t have the media asking us, and we very rarely have those running for office actually take the time to develop a detailed disability platform. I mean, it’s so rare that our issues get addressed that it was newsworthy when a single question was asked about disability during the 2020 primary.

Jack Rosen:

We wanted to give folks in our community, in the disability community, a chance to say what they want, what their lives are like, what kind of barriers they encounter that could be given political solutions. While I don’t know if the next commander-in-chief can solve ableism at a societal level, they absolutely could make it easier for people with disabilities to get jobs, to have access to accessible and affordable housing, to have access to healthcare and to the service providers they need. We interviewed about a half dozen people across our community about just that, about what they want and what they need from the next commander-in-chief.

Michelle Bishop:

Monica, could you talk a little bit about what it was like working on this project?

Monica Wiley:

Absolutely, Michelle, and thank you for the question. Working on this project from a personal, I’ll speak for it from a personal and professional perspective. From a personal perspective, as a person with a disability that has been very involved in voter engagement work in the cross-disability community, it was very eye-opening in certain ways in terms of others with different types of disabilities that their disability has impacted their ability to be confident and wanting to do their civic duty, which is voting, helping to promote voting for our community. Just how society just uses our disability against us as someone or as individuals, that don’t know what we want from our leaders or that we’re not capable of being able to vote, of having the ability to exercise our voice, whether it be in voting or whether it be in advocacy.

Monica Wiley:

To hear firsthand in a one-on-one discussion, I called it a conversation, was what I called it when I was interviewing the different voters, people in the cross-disability community, because that’s what we were having, we were having a conversation about these challenges, about what we want to see from the next commander-in-chief, and furthermore, what we want to see from our elected officials period.

Monica Wiley:

The next commander-in-chief is going to need these leaders to be in support of the work that needs to take place in our community, the policies, the laws that need to be for the betterment of our community. If we don’t have elected officials on the local level and state level to work closely with the next commander-in-chief, then we would continue to have these roadblocks. Being able to speak with individuals up and down the East Coast about their needs, about the challenges that they have faced, especially some of those who were first-time voters when they voted in the last election and are looking forward to voting again in this election. The feeling that I experienced when hearing these individuals talk about their level of excitement for wanting to be involved in voting, it was just simply amazing, Michelle.

Monica Wiley:

I would highly encourage the media and others to really pay attention to what, because we do know what we want to see for the next commander-in-chief. We do know what we expect from these leaders. We are very, very aware of what we’re voting for, what to take place, and making sure that we have the accommodations to be able to vote. I hope that answers your question,

Michelle Bishop:

Ew, David, if you want to be a co-host, you have to ask a question. Failing.

David Card:

Sorry, I was muted.

Monica Wiley:

I was like, “Is David supposed to go?”

Michelle Bishop:

He is. He is and he just ghosted us.

David Card:

I know. I’m sorry. This is my first time.

Michelle Bishop:

Excuses.

David Card:

Okay. Monica, what did you learn about voters in our community? Was there anything that surprised you as you talked to voters?

Monica Wiley:

Actually, there was. There was some things that surprised me from voters. One was, and I know that we are in the process of trying to expand technology and making sure that we have better access digitally, but I was surprised at how there are voters who are deaf and blind still encounter some of these challenges even when the HAVA Act says that you should have at least one voting machine that is accessible. As a person who’s not deaf and blind, but is a person that has a physical disability, I couldn’t necessarily connect with that challenge because that wasn’t my challenge. I would have thought that we would have done better with this, especially since I’ve been involved in organizing around voting and voting access for quite some time.

Monica Wiley:

To still hear and witness from these individuals that we have spoken to about their lack of access to the voter ballot, was still pretty interesting. I would say that was probably, for me, the biggest thing that I learned in terms of access. We talk about everyone having the right to vote and having access to the voter ballot, but then yet there’s still these various challenges as it pertains to a particular group within the cross-disability community. I was pretty perturbed by that piece.

Monica Wiley:

I am trying to think, because there were so many great individuals that we spoke with that had different types of disabilities. I would just say, David, that when you look at this short film, this short documentary, you will definitely see a reflection of the cross-disability community of those with different types of disabilities, their advocacy, their passion behind wanting to vote in this election, and their desire to really make an impact, and also make sure that society knows that they know what they’re doing, they are educated voters, and that they will be at the voter ballot in this election cycle. I hope that answers your question.

Jack Rosen:

I just want to add on to that, that one thing that really struck me was we had the chance to interview this gentleman, Jim Piat, and he is a retiree, and he grew up in what you could simply call the bad old days before the ADA, before HAVA, I mean before the disability rights movement really. I mean, he was even at the signing of the ADA. What struck me was some of the things he described. I mean, you hear about it when you talk to elders in our community. You read about it. You see it in films like Crip Camp. It was just striking to me when he described what things used to be like.

Jack Rosen:

I mean, he grew up going to school in a segregated environment. He tells this story in the movie that we made where he describes the first time he voted, he had to do it from a car because the polling place, forget having an accessible machine, he couldn’t get into the polling place. He couldn’t even mark the ballot himself because they didn’t have the technology at the time. He had to tell someone who he wanted to vote for. It really reminded me why we need politicians to promote change for our community because 50 years ago, that was the baseline. In spite of the progress we made, people like Jim and all of the voters we spoke to, are still not satisfied. They want more. They want and deserve a society that really meets the needs of people with disabilities.

Michelle Bishop:

This is amazing. Y’all know I get hype about elections, so I’m into it, but it’s also entirely too serious for this podcast. Do you all have any funny stories from filming?

Monica Wiley:

Actually, I do. We were filming in an area in North Carolina. It was an individual we were considering for the documentary. This person had, I would say, at least 15 cats. I may be exaggerating a tad bit, but there was quite a few cats. I get very scared and nervous around certain animals. While we were filming, the respective voter said, “Oh, they won’t come near you because they’re not familiar with you. They’ll probably just stay away and some of them will hide.” Well, there were two of them, maybe even three, that did not pay attention to those instructions or was just wanting to do their own thing.

Monica Wiley:

While I was about to ask the first question, the cat jumped up on the couch and I think, I believe I may have screamed, I may have screamed. Jack had to say, “We got to cut. We got to cut.” Of course we had to because at that point I was out of focus, I didn’t know how to handle it, and it was just a little bit scary for me. The cat was getting very close, and I would shy away a little bit. It was funny. I think the second time was, I think the cat actually, I’m not sure if the cat actually got on my leg but was close to my leg and so I had to keep my composure. I think the first one was me, actually, I think I did scream. I think I screamed a little bit. After we finished filming, I think we had to do it maybe two or three times. I can’t remember, Jack.

Monica Wiley:

For me, that was actually kind of funny now that I think about it and once we left. I actually screamed as if I was being attacked and I wasn’t. I was not used to cats and especially animals jumping up on the couch. I was trying to make sure that I was doing my job and being professional, and I was very focused. The cat took me off of focus. Yeah, I actually screamed. To me, that was funny.

Jack Rosen:

Oh my God. Yeah. I think with maybe one exception, every single voter we interviewed had cats. Yeah, going into this, I did not know Monica was afraid of cats. I never really thought to message people, “Hey, if you have cats, if you can get them to go in another room,” or whatever. Just by the end of it, I was just sending everyone, “If you have any pets, please, please try to put them in another room,” because it was literally every person had pets. You’d think at a certain point, statistically someone wouldn’t, but they all did. It was always a challenge because they would also try to jump on the cameras, on the lights. There are a lot of cords. A filming environment is barely a safe place for a person to try to walk around. There are a lot of tripping hazards, but then you add cats into the mix and every shoot was a bit of a challenge.

Monica Wiley:

Yes, I second that. Yeah, they wanted their spotlight. They wanted their five seconds of fame as well. To a certain extent, I can’t quite blame them, but yes, they were everywhere. They were on the cords, near the cords, but they would just jump around. To Jack’s point, just about everyone had a cat. Yes, I think the funny part was when I screamed. I think the other funny part was when one of the cats was actually behind me in the actual filming, and I believe we had to cut again because the cat was moving around and that type of thing. Yes, those were the funny moments.

Michelle Bishop:

Do we have enough footage for a blooper reel of Monica being attacked by house pets?

Jack Rosen:

I’m going to need to look back in the footage. We might have to put that out.

Michelle Bishop:

Give it some consideration. Just something to think about.

David Card:

I agree. As a cat lady, I would appreciate a blooper reel of cats.

Monica Wiley:

You know what, David? At times I thought about you, at times.

David Card:

Jack, you guys are premiering the film soon?

Jack Rosen:

Yes. October 10th at 3:00 P.M. Eastern Time. We’re going to be doing the virtual world premiere for Accessing Democracy. I’m going to put a link in the show notes. You can also find it under the events tab on the NDRN website. Be sure to register for that. Spots in our Zoom are filling up pretty quickly for that.

Jack Rosen:

After we show the film, we’re going to be doing a panel featuring Monica, myself, and hopefully a few special guests talking about how this film came together, what we learned in the process, why we think it’s so important for politicians and those who want to be in positions of power to listen to our community, and answering any questions that attendees have. Please be sure to register for that.

Jack Rosen:

You can also catch Accessing Democracy at a couple of film festivals. We’re going to be at the Utopia Film Festival that is in Greenbelt, Maryland. It takes place October 19th to the 21st. If you are a DMV local, be sure to buy a ticket and come out to that. We were also accepted to International Social Change Festival. We’re waiting back to get a little more info on how you can view the film through that festival, but be sure to check those both out. If you are a organization interested in organizing a screening, please reach out to me at jack.rosen@ndrn.org.

Michelle Bishop:

I see. Okay. The special guests for the premiere panel are supposed to be people who are actually related to the film. I didn’t know that. I’m going to go ahead and not send you the list, Jack, of special guests that I was going to recommend. Hold on, let me get it out. My list was Kendrick Lamar performing Not Like Us, or Taylor Swift and Travis Kelce. Don’t take my word on that. I don’t think those people are coming to the premiere. Otherwise, it should be amazing and we hope to see all of you there.

Jack Rosen:

We’re not saying they won’t be there, we’re just not saying they will. Show up. You never know.

Michelle Bishop:

You never know. You never know who the surprise guest might be. Y’all, thank you so much for giving us your time today. This was really fantastic. I’m so excited for the premiere. I’m excited for the premiere, and I’ve actually already seen the film, so you know it’s that good. All of you should come check it out. Definitely if you’re in the area, come see us at some film festivals because that’s really cool. To close this out today, I don’t actually know where half of the podcast team are, and Stephanie usually tells us a joke, like a bad, I don’t want to say a bad joke, but a bad joke to close this out. David, our special guest host, do you have a joke for us?

David Card:

Oh, geez. I think any joke I would tell would end up with a visit to HR, so I’m going to decline.

Michelle Bishop:

Oh wait, I have a joke and it’s on theme. It’s on theme from the interview. Okay, you guys ready? Okay, so a cat walks into a, see it’s a cat, so it’s on theme, a cat walks into a library and goes right up to the front desk of the librarian and says, “I would like some tuna fish, please.” The librarian’s like, “You’re in a library?” The cat says *Michelle whispers* “Oh, I’m so sorry. Forgive me. I would like some tuna fish, please.”

Monica Wiley:

Oh my God.

Jack Rosen:

And you boo Stephanie after every single one of her jokes.

Michelle Bishop:

That joke is hilarious. He whispered because it’s a library. That joke is funny. That joke is funny. Stephanie is somewhere laughing and she doesn’t even know why.

Jack Rosen:

Oh my God. All right folks, as always, you can follow us on Twitter, Instagram, LinkedIn, Facebook, Threads. You can follow the TikTok we don’t use. You can visit us at ndrn.org and you can email the podcast at podcast@ndrn.org. Until next time, folks.

 

The gang celebrates the holidays with a slightly disorganized episode talking about our holiday traditions and how we’re celebrating this year. Sort of featuring special guest Quinn McEben.

 

Link to our Bonfire shop: https://www.bonfire.com/store/national-disability-rights-network/

Stephanie Flynt McEben: Well, hello, podcast listeners of the universe. We are doing a different episode this month, which is why I chimed in before Michelle could to introduce the fun episode. So I’m Stephanie Flynt McEben. I am one of your hosts here at the National Disability Rights Network for National Disability Radio.

Michelle Bishop: Hey hey, it’s Michelle Bishop, and I am the manager for voter access and engagement here at NDRN, and one of your hosts. And I didn’t have to start the episode, so I guess I just get to retire now, guys, and this might be my last episode.

Stephanie Flynt McEben: No, no, no, no, no, no, no, no, that’s not how it goes. Also I forgot to say that I’m a public policy analyst. Excuse me for butchering my title after being here for three years.

Michelle Bishop: And we also have a producer.

Jack Rosen: Hi.

Michelle Bishop: I got in there with that real quick on producer.

Jack Rosen: Really, even at the holiday spirit, you couldn’t acknowledge my hosting?

Michelle Bishop: Pro host.

Stephanie Flynt McEben: Pro host.

Michelle Bishop: Pro host.

Stephanie Flynt McEben: Honestly, that sounds fancy. Like I almost like the title of pro host because it like makes you sound all like fancy and like you’ve got your s–t together.

Michelle Bishop: Pro host for the holidays.

Jack Rosen: I gotta remember to bleep that out.

Stephanie Flynt McEben: Oh, I did that on purpose.

Michlle Bishop: She gave you the ish, she said she censored herself like a rap song on FM radio.

Stephanie Flynt McEben: Exactly.

Jack Rosen: True.

Stephanie Flynt McEben: We’re National Disability Radio, so we’ve gotta like, you know, pretend like we’re the radio.

Jack Rosen: That’s true, we don’t want the FCC to fine us. Anyway, hi, everyone, Jack Rosen here. I am NDRN’s senior digital communications specialist.

Michlle Bishop: mean, maybe the FCC should fine us. I feel like, just like, you know, no press is bad press, right?

Stephanie Flynt McEben:  I feel like Jack says that like every single time we meet to discuss anything podcast related.

Michelle Bishop That we’re gonna get fine or sued in some form?

Stephanie Flynt McEben:  No, that no press is bad press.

Michelle Bishop: Oh, ’cause we’re definitely eventually gonna get sued.

Stephanie Flynt McEben:  Yeah.

Jack Rosen: It usually is in the context of getting sued. Look, someone’s gotta sue us eventually. That’s how we make it in the industry.

Michelle Bishop: Just you know, waiting, I mean, we keep trying. I keep singing songs we don’t have the rights to and everything, and just everyone keeps letting us slide.

Stephanie Flynt McEben: Are we seriously advocating to get sued right now? Like I do not think our legal counsel would be for this.

Jack Rosen: Look, Stephanie, if you don’t have haters, you’re doing something wrong.

Stephanie Flynt McEben:  ♪ Because the haters gonna hate, hate, hate, hate, hate ♪

Michelle Bishop Stephanie, you’re my favorite.

Stephanie Flynt McEben: Thank you.

Michelle Bishop: You know this is a sad time in my life. We’re in the post “Eras” era, and that’s just a very difficult time for me, so I appreciate you being supportive.

Stephanie Flynt McEben: You mean the post “Eras”?

Michelle Bishop: Exactly, Stephanie, you just get me.

Stephanie Flynt McEben: I know, I know, we’re both each other’s translators.

Michelle Bishop: It’s true, and it’s just, you know, a holiday season without watching grainy live streams of concerts I can’t afford to attend, it is just a very daunting prospect for me right now, so I appreciate all your love and support.

Stephanie Flynt McEben: Yes, retweet, and also too, like if you also wanna share your love and support and solidarity with me and Michelle, feel free to send an email to podcast@ndrn.org.

Michelle Bishop: That’s right, Taylor Swift. But anyway, so Stephanie, tell us about your holiday plans.

Stephanie Flynt McEben: Oh, wow, so our-

Michelle Bishop: End of the season, I guess we don’t have seasons. End of the year episode.

Stephanie Flynt McEben: Oh my gosh, okay, is this like season two? I don’t know.

Michelle Bishop: I don’t know. I don’t think we actually have seasons. This is not the most organized podcast in the universe.

Stephanie Flynt McEben: This is like chitchat holiday edition, and like yeah, I mean, I like the seasons pun anyway.

Michelle Bishop: Yeah.

Stephanie Flynt McEben: If you get that, feel free to email podcast@ndr.org.

Michelle Bishop: If you’re listening to this episode, you must really like us, ’cause we do not have any disability rights content planned.

Stephanie Flynt McEben: No, no, we’re getting a little up-close and personal, except not that personal. Anyway-

Michelle Bishop: So tell us about Nala’s holiday plans. I mean, your holiday plans.

Stephanie Flynt McEben: Oh yeah, my mine I guess are kind of important, I dunno. I’m going to Texas to spend the holidays with my wife’s family, which that’ll be exciting. Actually, we’re recording this on Tuesday, December, oh my God, I’m gonna get the date wrong, 17th, so I actually fly out on Thursday, December 19th, which is super exciting. And we got matching Christmas pajamas for our dogs, because of course we did, and we also got matching human pajamas that coordinate with our dogs’ pajamas because of course we did, so that’s exciting.

Michelle Bishop: So you’re getting back in touch with your southern roots for the holidays.

Stephanie Flynt McEben: I am. Well, the thing is, is like, we always have to have matching pajamas. Like Nala and I have done that for a while. Hopefully we’ll get their pictures with Santa. Apparently Bailey has never had a photo with Santa Paws, so it has to be fixed, ’cause Nala gets a photo like almost every year with Santa Paws, and she’s obsessed.

Michelle Bishop: Right, the scandal. I meant you were going to Texas is getting back in touch with your southern roots.

Stephanie Flynt McEben: Oh yeah, I mean, like, I’m going to like the panhandle of Texas. Quinn, did you have something to add? I said that. My wife is making a cameo on our podcast. You’re being recorded.

Michelle Bishop: We can’t hear Quinn, we just hear you yelling at Quinn.

Stephanie Flynt McEben: I mean, that’s per, I mean, they were like, oh.

Michelle Bishop: Ah, marriage.

Stephanie Flynt McEben: ♪ Love and marriage, love and marriage ♪ ♪ Doo doo doo doo doo doo doo doo doo ♪

Stephanie Flynt McEben: Anyway.

Michelle Bishop: Tell me, what’s in the panhandle of Texas?

Stephanie Flynt McEben: Well, my wife just came in here, so maybe they can describe, what’s in the panhandle of Texas?

Michelle Bishop: Tell us about the panhandle, Quinn.

Stephanie Flynt McEben:  Quinn said nothing and then walked out.

Quinn McEben: I didn’t walk out.

Stephanie Flynt McEben: Oh, Quinn didn’t walk out, yay.

Quinn McEben: Cows, oil, eggs, basically that.

Michelle Bishop: Oil, there’s oil in the panhandle?

Quinn McEben: Yeah, it’s big oil and cow, pig, and Bailey is also joining.

Michelle Bishop: Is all the oil owned or like if me and Jack show up and we start like digging, is there a chance we could make some money here?

Jack Rosen: Yeah.

Quinn McEben: Well, my grandparents found some on their land when they were digging. Well actually, their cattle found some, which is like perfect for this story.

Jack Rosen: So I could be a Texas oil man, because that does sound fun, and I was watching “There Will Be Blood” last night.

Michelle Bishop: You give oil tycoon a little bit.

Jack Rosen: I would love to be an oil tycoon. I could have the big hat. I could have the alligator leather shoes. That would be fun.

Michelle Bishop: You’d have a belt buckle in the shape of Texas.

Quinn McEben: When I was looking for gifts, I found this thing that you can put your cowboy hat and so you can put it on the dash of your car, and it’s like a little sucker thing, like, you know, a suction cup thing.

Jack Rosen: That is so aggressively Texas, I love it.

Michelle Bishop: Most Texas thing I’ve ever heard.

Quinn McEben: All right, I’m gonna get out of this room. I’m sorry, guys.

Stephanie Flynt McEben: No, we wanted you to make a cameo.

Michelle Bishop: Now we can advertise this episode as having special guests.

Stephanie Flynt McEben: Yes.

Quinn McEben: Exactly.

Stephanie Flynt McEben: See, see, there we go, thank you. Thank you, Quinn, round of, okay, anyway.

Jack Rosen: I think Quinn might be one of our most frequent guests at this point.

Stephanie Flynt McEben: That’s fair, I mean, honestly, like Quinn and Amy are like pretty rad guests if I do say so myself. But anyway, what are y’all doing this year for the holidays?

Michelle Bishop: I feel like we just learned a lot about Jack, who wants to be, secretly wants to be a Texas oil tycoon.

Jack Rosen: I mean, I’m just saying it pays a little more than working in the nonprofit world.

Stephanie Flynt McEben:  Okay.

Michelle Bishop: That’s fair. I’m oddly not that surprised too.

Stephanie Flynt McEben: So Jack wants to be an oil tycoon for the holidays. Didn’t realize we were going back to Halloween. Michelle, what are you doing for the holidays?

Michelle Bishop: Baking, guys, you know that’s my thing. We did a whole election day episode of me stress baking, so that’s my jam. I’m going to be making my famous frosted rollout sugar cookies. Christmas, I believe, is my biggest collection of cookie cutters. Well, nope, Halloween might be, but they’re rivals, it’s close, and I’m going to be making, you’ll be very interested in this, Stephanie, I will be making Taylor Swift’s recipe for chai latte sugar cookies.

Stephanie Flynt McEben: Oh my God, okay, are you planning on bringing Stephanie some cookies at the beginning?

Michelle Bishop I’m gonna have to. The Taylor Swift cookies are a big hit with the family.

Stephanie Flynt McEben: I can’t bake to save my life, so I’m ready for this.

Michelle Bishop: Oh, baking, my god, I can’t cook, so I have to bake.

Stephanie Flynt McEben: Fair enough, I can cook. I think I can cook anyway, but.

Michelle Bishop: So that’s my job. I’ll be making the desserts, so I’ll be doing a bunch of baking and then, I mean, my family is local these days, so I don’t have to go anywhere. I don’t have to travel, which is the best. I spent a lot of my life trying to get between St. Louis, Missouri, and Syracuse, New York during winter holidays, and that is brutal enough to last me a lifetime. I can’t tell you the number of times I’ve been stuck in O’Hare in a snow storm in the middle of the night, trying to get there for Thanksgiving, so I-

Stephanie Flynt McEben: God. O’Hare of all places, why didn’t you go through Midway? That might have to be cut out.

Michelle Bishop: We’re gonna get sued by O’Hare Airport. Of all the things we could have gotten sued by, we’re gonna get us sued by an airport. That’s so boring.

Jack Rosen: Hey, we’ve been doing a lot of work around antagonizing the airline industry lately. I just see this as an extension of that.

Michelle Bishop: It’s true, it’s a culmination of months and months worth of work.

Stephanie Flynt McEben: Fair enough, fair enough, oh my goodness. Okay, so do y’all have any funny stories? I know this is kind of weird, but like, do y’all have any funny stories from the holidays that like y’all wanna share with the people? I told ’em we were getting personal.

Michelle Bishop: Ooh, that’s a good question. Jack, do you have a story?

Jack Rosen: It’s less a story, more of a tradition. Most years we spend it with these family friends of ours, and it’s very sweet, the mom refers to me as her Jewish son and I get my own stocking, but usually it’ll be like, she’ll find like a star of David one or a Hanukkah themed one, and it’s really sweet, and we just spend it with them.

Michelle Bishop: That’s super cute, Jack. You know, for a while my family used to, we have some little kiddos back in the family again, you guys both know I have very young niece and nephews, but when we were just a bunch of adults celebrating Christmas, we did the grand tradition of ordering Chinese food and going to the movies on Christmas Day, and I feel like that’s gonna resonate with you.

Jack Rosen: Okay, so I’m trying to find a Chinese place in DC that’s open on Christmas day.

Michelle Bishop: They’re not open?

Jack Rosen: I’ve not had any luck. Literally my next call after this is calling up Chinese restaurants to see who’s open because I can’t find anything on OpenTable.

Michelle Bishop: I’m so sorry, that’s terrible. Are there at least good movies opening on Christmas day? Are you going to a movie?

Jack Rosen: My dad’s coming down, so maybe we’re thinking of watching the Bob Dylan movie, but decent chance we end up just watching football.

Michelle Bishop: Mm, do they play football on Christmas day?

Stephanie Flynt McEben: Oh God.

Jack Rosen: Yeah, actually Netflix got the rights to it this year.

Michelle Bishop: Netflix shows football?

Jack Rosen: They’re showing two games this year, and they’re making a big production out of it.

Michelle Bishop: Oh.

Michelle Bishop: Please do not send us angry emails just because I don’t know anything about football. I’m sorry, I apologize. I realize it’s incredibly un-American of me, but I’m not, I don’t watch football.

Stephanie Flynt McEben: I know about football tailgate food.

Jack Rosen: Oh wait, no, y’all should watch because the halftime show for the Ravens Texans game is Beyonce.

Stephanie Flynt McEben: Ooh.

Michelle Bishop: Oh, is she doing Christmas day? I thought she was doing the Super Bowl. Who’s doing the Super Bowl?

Jack Rosen: Kendrick Lamar is doing the Super Bowl.

Michelle Bishop That’s right, Kendrick Lamar, and he’s probably just gonna do “Not Like Us” six times in a row or something, which is not a complaint from me. That’s kind of what I’m hoping will happen. Okay well, then I’ll definitely put on Beyonce on Christmas day, I’m down.

Jack Rosen: I’m going to his tour with SZA, and I need to hear him do “Not Like Us.”

Michelle Bishop: He’s touring with SZS, that’s gonna be amazing.

Jack Rosen: Yes, though I’m so annoyed because the local DC show is at, I don’t know what it’s called, it’s FedEx Field, but they changed the name and-

Stephanie Flynt McEben: Oh, did they?

Jack Rosen: Yes, it’s Northwestern now, I think.

Stephanie Flynt McEben: Oh God.

Jack Rosen: But they were charging more than the other stadiums, and it was so annoying to go to that like crappy venue.

Michelle Bishop: That’s weird.

Jack Rosen: You know what, FedEx Field, you can sue us. I will stand by what I said, It’s a bad venue.

Michelle Bishop: Whoa, whoa, this episode took a turn real fast. Little-known fact, NDRN staffer Corey Bernstein, big SZA fan.

Stephanie Flynt McEben: Who is SZA?

Michelle Bishop: Oh, Stephanie.

Jack Rosen: Really?

Stephanie Flynt McEben: Yeah.

Michelle Bishop: Stephanie.

Stephanie Flynt McEben: Is it SZA or SZER?

Jack Rosen: S-Z-A, SZA.

Michelle Bishop: Oh my God, Stephanie.

Jack Rosen: She’s really good. She’s like R&B and pop, like.

Michelle Bishop: Oh, her album’s a masterpiece.

Stephanie Flynt McEben: Okay, I will look up SZA after this.

Jack Rosen: Oh my God, I saw her last year at a music festival, and I was like, “Oh, I don’t really know her music,” and then she’s doing her headliner set, and I’m like, “Oh wait, I know every single one of these songs.”

Michelle Bishop: Yeah, you know her whether or not you think you do, for sure. She’s everywhere, her music’s incredible.

Stephanie Flynt McEben: The more you learn.

Michelle Bishop: Don’t hurt us like this on the holiday episode, Stephanie.

Stephanie Flynt McEben: I’ll try not to, oh my goodness. Jack, do you have any funny Christmas, oh, sorry, Jack already went, oops. Michelle, do you have any funny Christmas stories?

Michelle Bishop: Do I have any funny Christmas stories?

Stephanie Flynt McEben: That’s the question.

Michelle Bishop: I can think of a couple things. Well, Jack was talking about stockings and it reminded me we still do stockings with our family and everyone has their own stocking, and the biggest stocking in the house by far, it’s ginormous, belongs to Mason the Yorkiepoo.

Stephanie Flynt McEben: Yes.

Michelle Bishop: Yes, the dog has a ginormous stocking with his name and his face on it because he is by far everyone’s favorite member of the family.

Stephanie Flynt McEben: I love that so much.

Michelle Bishop: There’s no competition. There will be treats in that bad boy on Christmas morning, I promise you. But okay, a funny story, I was thinking about this when you asked it. So I’m a youngest child, which I assume all of you know, because even if you haven’t heard that, I feel like it’s incredibly evident in my personality that I am a youngest child. You don’t talk this loud for no reason. So growing up, Christmas Day used to be me and my older brother and my parents, like in the morning, right? We come down and we do gifts and everything, and then we’d see like, you know, the rest of our family later in the day, and we’d see them on Christmas Eve. So Christmas morning, so first of all, it somehow became my job to hand out everyone’s gifts, like it just became a thing, I don’t know why. So I’d put on this like little, you’d love it, Stephanie, little sequin-covered Santa hat.

Stephanie Flynt McEben: Oh my gosh, yes.

Michelle Bishop: I still have it, and I would hand out all the gifts, and one year, we’re sitting there and I kid you not, I’m like 27 years old at this point, and this is not like a childhood memory, I’m an adult, guys. I have a job and a 401k and health insurance and everything. I had to fly in for the holiday. We’re opening gifts, everyone has a gift that’s, you know, from Mom and Dad, from Chris, that’s my brother’s name, whatever. Every single one of my gifts is from Santa. I was an adult, guys, I was an adult. I was like, literally, not only do my parents still give me gifts from Santa as an adult, but my older brother still gives me gifts from Santa.

Stephanie Flynt McEben: That is wild. That actually makes me think of what my dad has been doing for the past five years when he wraps gifts. So like, he just puts like random people on there, like from George Clooney. Like he got me a Nespresso like a couple years ago, and so he put from George Clooney.

Michelle Bishop: Oh, he does ads for Nespresso, I think.

Stephanie Flynt McEben: Yeah, I think so. But like he will put like different politicos, and yes, he does both sides of the aisle. I’ve gotten a present from Trump. I’ve gotten a present from Joe Biden. I’ve gotten a present from, oh gosh, Paris Hilton, I think. And then I got a present from, oh God, what is his name? Or I don’t know, anyway, my dad like does, oh, and of course the Santa presents, but yeah, no, nobody gets presents from like people, but celebrities in our house now, which is so funny.

Michelle Bishop: I mean, it’s not like I get like some presents that are from Mom and Dad and then some from Santa. Every single one of them is from Santa.

Stephanie Flynt McEben: Yeah, that’s wild.

Michelle Bishop:: Every single one of ’em, and the best part is the ones that are from my older brother, it’s like, it’s one thing when it’s from my parents and it’s beautifully wrapped and it has a little gift tag on it that’s like to Michelle from Santa. It’s another thing when you get one that’s like wrapped in an old page of a desk calendar with some of his old appointments on it, and he wrote from Santa in a Sharpie on it. That just doesn’t, it doesn’t.

Jack Rosen: That’s hilarious.

Michelle Bishop: It’s not giving Santa Claus.

Stephanie Flynt McEben: From Santa, the accountant. I don’t know what your brother does, but.

Michelle Bishop: He’s a graphic designer.

Stephanie Flynt McEben: Okay, from Santa, the designer.

Michelle Bishop: It’s really hilarious stuff on his old desk calendars. But so the morning it happened, like Christmas morning when we finally realized, I was like, “Guys, where are all my presents from Santa?” And I was holding a gift from my older brother and I looked down it and I said, “Actually, I think this one is from Sarta,” because that’s how bad his handwriting is. So to this day, I’m not 27 anymore, I’m not gonna tell you how old I am, but I am no longer 27, to this day, I get at least one gift every year of something incredibly random from Sarta, who labels the gift in a Sharpie.

Stephanie Flynt McEben: That is so funny.

Michelle Bishop: That is a long running-family tradition. I mean, short-running family tradition, ’cause obviously I’m not 27, but you know, I’m not like a day over like 32, right? So.

Stephanie Flynt McEben: I was about to stay. Yeah, aren’t you like 30, flirty, and thriving or something?

Michelle Bishop: Right, just kidding, this all happened like last year, ’cause I am so young, but.

Stephanie Flynt McEben: I love this so much. Oh goodness, speaking of presents, I’ll never forget when I was in the ninth grade. So I really love playing piano and have been playing piano since I was four, and so I opened a Christmas present from my parents in the ninth grade, and I was looking at it, I’m like, “What is this?” Now, to describe it, I’m gonna try to describe it as best as I can without completely and totally giving it away. But there was like this lever that went up and down and up and down and I’m like, “Did they seriously just give me a lever?” Like I’m about to throw it back. Some of my millennial, my like millennial, early Gen Z people are gonna get this. But like, gave me a lever, like it was “The Emperor’s New School,” like pull the lever, Cronk, or whatever, and so I was just like, “They gave me a lever,” and then I continue to look, and I’m like, “This thing has a chord in the back.” I’m like, “What is this supposed to do?” And so like, I’m literally playing 20 questions, trying to figure out what this is, and finally like my parents give up, or my mom specifically gave up and was like, “Just come into our room.” And I was like, “Oh my God, am I in trouble for not being able to guess like what this is?” And so I go in there, and y’all, it’s like an electronic Yamaha keyboard. They wrapped up like a keyboard pedal for me for Christmas and confused the helicopter out of me. So yeah that was a thing. Blindness Christmas moment, if you will. ’cause I’m pretty sure it had Yamaha on like the bottom of the pedal

Michelle Bishop: Did it like, was it like ingrained or didn’t stick out? Could you figure out it’s in Yamaha? You can’t give part of a gift to a blind person, I feel like.

Stephanie Flynt McEben: I know, it just seemed, I mean, like, I don’t remember if it did. If it was engraved, I didn’t see it, but like, I can also, like, I could also see if it was like, you know, printed on a sticker at the bottom or something, and I just didn’t know it was there. So yeah, that was a weird Christmas, but.

Michelle Bishop: They got you pretty good with that one.

Stephanie Flynt McEben: Yeah, I still have that keyboard.

Michelle Bishop: Fabulous, wait, you have to play something for us.

Jack Rosen: Yeah, when are we getting the jingles, Stephanie? You’ve been-

Michelle Bishop: Oh.

Stephanie Flynt McEben: Oh no, oh, the jingles.

Stephanie Flynt McEben: Here we go.

Michelle Bishop: It starts.

Stephanie Flynt McEben: I’ll work on the jingles.

Michelle Bishop: You have been promising to write jingles-

Stephanie Flynt McEben: I know.

Michelle Bishop: For like how long has it been now, Jack? It’s been a while. He’s been very anxious for the jingles. It’s a whole thing.

Stephanie Flynt McEben: It really is, though. Okay, I will work on that in the new year.

Michelle Bishop: And it’s your fault you brought up the keyboard.

Jack Rosen: Think about how much money we could save if instead of having to pay for a music library, all of our podcasts, videos, et cetera, just have jingles done by Stephanie.

Stephanie Flynt McEben: I didn’t realize we had to pay for a music library. That’s kind of annoying.

Jack Rosen: We do, or otherwise we’d be using copyrighted music and getting sued.

Stephanie Flynt McEben: Oh, well you wanna get sued, so.

Jack Rosen: In that case, we’d be too guilty. I don’t wanna get sued for that one.

Michelle Bishop: Yeah, it’s gotta be something we can potentially defend ourselves and get out of it. We have to come out vindicated.

Stephanie Flynt McEben: Selected suing or selective suing.

Michelle Bishop: Yeah, we have to get sued by somebody really, really big, and then we win, and we come out of it looking like “The Karate Kid,” you know what I’m saying?

Stephanie Flynt McEben: Fair enough, fair enough.

Michelle Bishop: Gotta give it, it’s gotta be like underdog vibes, and then we’re vindicated in the end.

Stephanie Flynt McEben: I love that.

Michelle Bishop: And then when they make a movie or a Netflix short series about us, we come out victorious in the end.

Stephanie Flynt McEben: I love that, National Disability TV.

Michelle Bishop: Oh, we should have a TV show. Jack, can we do a TV show?

Jack Rosen: Honestly, yes, I’m on board for that one.

Michelle Bishop: Oh, I really thought you were gonna say no.

Stephanie Flynt McEben: Yeah, me too.

Michelle Bishop: Caught the holiday spirit.

Jack Rosen: That one’s, I’m on board. The only condition is you get to be the one to pitch Marlena on that.

Stephanie Flynt McEben: Wait, who is the you?

Jack Rosen: I’d guess either of you.

Michelle Bishop: Not it.

Stephanie Flynt McEben: Oh, come on, Michelle.

Michelle Bishop: Nah, it’s Stephanie, I said not it.

Stephanie Flynt McEben: Yeah, but like remember when you guys pitched the documentary? Like you have a golden streak so far.

Michelle Bishop: Yeah, but I said not it, though. I feel like that’s the rules.

Stephanie Flynt: Fake news.

Michelle Bishop: Yeah, I did a preemptive not it, so that’d definitely be you.

Stephanie Flynt McEben: Fine, all right, I’ll be it.

Michelle Bishop: Show up with Nala.

Stephanie Flynt McEben: Oh, y’all can hear Nala’s collar jingling in the background?

Michelle Bishop: No, but that’s amazing. I was just thinking bring Nala into that meeting when you pitch the idea.

Stephanie Flynt McEben: Yep, there you go. I mean, I’ll just let Nala pitch the idea. I’ll put like a sticky note on her collar that says TV show with a question mark.

Michelle Bishop: I feel like that would work, actually.

Stephanie Flynt McEben: Yeah, low key. If anyone has any other ideas on how to pitch a TV show, please feel free to email podcast@ndrn.org.

Michelle Bishop: You’ve been really pushing that email pretty hard.

Stephanie Flynt McEben: Yeah, ’cause you know, we gotta let the people know how to contact us if they think we’re cool cats.

Michelle Bishop: Or if you also, you know, I’ve like topics for episodes that are actually about disability rights stuff.

Stephanie Flynt McEben: Yeah, that’s I guess a thing too, right? Because-

Jack Rosen: Or if you want to give NDRN money and want to make us look good in the process.

Stephanie Flynt McEben: Oh yeah, that reminds me.

Michelle Bishop: Do they know about the store? Do they know about the store, Jack? Have we told ’em about the store?

Stephanie Flynt McEben: I was gonna say. This reminds me today’s sponsor.

Michelle Bishop: Hello, if you haven’t finished your holiday shopping.

Stephanie Flynt McEben: Thank you, NDRN’s new merch store for sponsoring this episode. We’ve got lots of T-shirts, we’ve got some Nala merch. We’ve got a mug that says Protect, Advocate, and Caffeinate, which I desperately need to get. Y’all know that I, you know, need coffee on an IV drip.

Jack Rosen: Yes, and you can find our store at…somewhere. I’m trying to find it.

Stephanie Flynt McEben:  Bonfire.

Jack Rosen: It’s at Bonfire.

Stephanie Flynt McEben: We’ll put a link in the show notes.

Jack Rosen: It’s something, it’s somewhere.

Michelle Bishop: We might have to edit this part. We might have to take this out and put in a clip of you sounding very confident about where to find our store.

Jack Rosen: Okay, it’s at bonfire.com/org national-disability-rights-network-inc-592333653.

Michelle Bishop: Is there a possibility of making a URL that redirects to that?

Stephanie Flynt McEben: Right.

Jack Rosen: It’ll be in the show notes.

Stephanie Flynt McEben: I was gonna say, yeah, that’s like a very intense URL.

Jack Rosen: And I’m only 70% certain I got the number of threes right.

Michelle Bishop: It didn’t sound that confident. What’s the name of the website that hosts the store?

Jack Rosen: It’s Bonfire. If you look up National Disability Rights Network on Bonfire, you’ll find us. Yeah, we have a Nala mug. We have a tote bag featuring Nala that says may contain treats. We have a shirt that says The Future is Accessible. We’ve sold a few of those. Oh, and my personal favorite, for our mobility aid users out there, we have one that says Don’t Make Me Roll Over Your Foot.

Stephanie Flynt McEben: We need a cane one.

Michelle Bishop: I have actually seen the Don’t Make Me Roll Over Your Foot one posted on TikTok.

Jack Rosen: Wait, really?

Michelle Bishop: Yeah.

Jack Rosen: Did you post it on TikTok?

Michelle Bishop: I never post on TikTok. I’m not trying to get roasted by children. Literally never posted on TikTok in my life. I think it might have been one of the P&As. I’ll find it, Jack, I’ll find it.

Jack Rosen: Okay.

Michelle Bishop: My bad.

Stephanie Flynt McEben: (Inaudible) In the tote bag.

Michelle Bishop: Should have sent it to you before. But if you haven’t finished your holiday shopping, you can still order from our new store at Bonfire, the single best Childish Gambino song ever released.

Stephanie Flynt McEben: Who’s that?

Michelle Bishop: Don’t hurt me like this, Stephanie.

Jack Rosen: That, oh, now I gotta think about what my favorite Childish Gambino song is.

Michelle Bishop: Definitely “Bonfire.”

Jack Rosen: “Camp” is his best album.

Michelle Bishop: “Camp” is his best album for sure.

Stephanie Flynt McEben: You guys keep me young, as Regina George’s mom says.

Michelle Bishop: That’s hilarious.

Jack Rosen: Stephanie, this album came out like 12 years ago.

Michelle Bishop: Yeah, this is not a new album.

Stephanie Flynt McEben: Oh.

Michelle Bishop: I know, Stephanie, Stephanie.

Stephanie Flynt McEben: I just, I don’t even know who Childish Gambino is.

Michelle Bishop: Donald Glover.

Stephanie Flynt McEben: Who’s that?

Stephanie Flynt McEben: Okay.

Jack Rosen: He was in “Community.”

Stephanie Flynt McEben: What’s that?

Jack Rosen: He was in “30 Rock.”

Michelle Bishop: Stephanie.

Jack Rosen: He did “Atlanta.”

Stephanie Flynt McEben:  Atlanta?

Michelle Bishop: The TV show.

Stephanie Flynt McEben: There’s a TV show called “Atlanta”?

Michelle Bishop: Stephanie.

Stephanie Flynt McEben: I watch “Live PD” and “The Golden Girls.” I should get credit for that.

Michelle Bishop: You know, if there’s a spectrum of television shows, “The Golden Girls” and “Atlanta” are shockingly at opposite ends of the spectrum and surprisingly similar.

Stephanie Flynt McEben: Yeah, in case you have a guess, Stephanie has really bad knowledge.

Michelle Bishop: I feel like anyone who listens to this podcast enough knows.

Stephanie Flynt McEben: Well, we have to make sure that people have a definitive answer to this.

Michelle Bishop: It’s good that you’re admitting it.

Stephanie Flynt McEben: I’m trying, I’m trying to be more honest with the people.

Jack Rosen: Stephanie, I just have a question about your pop culture knowledge.

Stephanie Flynt McEben: Oh gosh.

Jack Rosen: Since it’s been out half a year, Have you listened to “Brat”?

Stephanie Flynt McEben: Oh, no, I need to do that. That’s the Charli XCX album, right?

Jack Rosen: Yeah.

Michelle Bishop: I haven’t listened to it either, I’m gonna confess.

Jack Rosen: You guy’s missed “Brat Summer”

Michelle Bishop: I did, I missed “Brat Summer.”

Stephanie Flynt McEben: I know the like, I don’t know, there was some sort of “Brat” thing going around social media.

Michelle Bishop: My musical tastes are a little bit more sad girl autumn than they are “Brat Summer.”

Stephanie Flynt McEben: The, like Maggie Rogers and-

Michelle Bishop: I love Maggie Rogers, Stephanie.

Stephanie Flynt McEben: Yes.

Michelle Bishop: Why have we not talked about this before?

Stephanie Flynt McEben: I don’t know.

Michelle Bishop: Yes.

Stephanie Flynt McEben: We really should like swap playlists.

Michelle Bishop: I love Maggie Rogers, also just like “Folklore,” “Evermore” kind of vibes.

Stephanie Flynt McEben: Yes, I completely agree.

Michelle Bishop: Yes, yes. People think being a Swifty means you like dance around your house to “Shake It Off,” and it more often means lying face down on your bed crying to “Champagne Problems.”

Stephanie Flynt McEben: Basically. People don’t get it. Or like, crying because of, what is that song? Oh, “Nothing New,” goodness.

Michelle Bishop: Surprising amount of anxiety, depression, murder, and suicide in her music.

Stephanie Flynt McEben: Yeah, mm-hmm, fair enough.

Michelle Bishop: A truly shocking amount if you haven’t listened to the full catalog.

Stephanie Flynt McEben: Yeah, no, fair enough. I will say this, “Nothing New” makes me feel like really ancient whenever I listen to it, because like, I’ll go on the Hill, and there are all these like early 20 something staffers, and I’m like, “Oh my gosh.”

Michelle Bishop: I’m sorry for what I’m about to say to hurt your feelings, Stephanie, but when I went to “The Eras Tour,” at MetLife, night one, Phoebe Bridgers came out and they performed that song together.

Stephanie Flynt McEben: That’s not fair.

Michelle Bishop: It was amazing.

Stephanie Flynt McEben: I’m upset, what? I love Phoebe Bridgers, though.

Michelle Bishop: Well, Phoebe Bridgers was the opener for that show.

Stephanie Flynt McEben: I’m so sad.

Michelle Bishop: It was amazing, I’m sorry you weren’t there. You should have come.

Stephanie Flynt McEben: I’m sorry I wasn’t there.

Michelle Bishop: You and Nala should have been right there with us.

Stephanie Flynt McEben: Gosh, Nala just heard her name, and her little ears perked up.

Michelle Bishop: ‘Cause that’s my bestie.

Stephanie Flynt McEben:  Mm-hmm.

Michelle Bishop: Sorry, Nala’s like, “That’s right. I should have been there.” Oh, can you see Nala with little friendship bracelets on her little paws?

Stephanie Flynt McEben: Oh my gosh, yes.

Michelle Bishop: Right?

Stephanie Flynt McEben: Like around her collar or something.

Michelle Bishop:: We could have dressed her up in a little themed outfit. They actually do make dog collars that look like big friendship bracelets.

Stephanie Flynt McEben: Wait, for real?

Michelle Bishop: In case anyone’s looking for a last minute holiday gift for Stephanie.

Stephanie Flynt McEben: Yes, we also take gifts, but we don’t take solicitations.

Michelle Bishop: So the second we started talking about Maggie Rogers and Taylor Swift, Jack just went on mute.

Stephanie Flynt McEben: Oh. Jack, we can talk about Chappell next. Wait, did that get him?

Michelle Bishop: He just went off mute as soon as you said that.

Jack Rosen: Look, I don’t know if I could talk about Chappell. I’m still sad about not getting to go to the tour.

Stephanie Flynt McEben: I feel this on a spiritual level. Oh yeah, if anybody wants to buy me and Jack Chappell Roan tickets.

Jack Rosen: Listeners, it’s really bad. Stephanie and I at one point talked about flying to Iowa to see her.

Stephanie Flynt McEben:  Yeah, like, you know it’s bad.

Jack Rosen: And the problem was that we couldn’t get tickets, not that it was a terrible idea.

Stephanie Flynt McEben:  Right.

Jack Rosen:: But the tickets sold out.

Michelle Bishop: I went to Europe for “The Eras Tour” twice, so you know I don’t think there’s anything outrageous about going to Iowa for a concert. I fully support this idea.

Stephanie Flynt McEben: Yeah, I just wanna see her so bad.

Jack Rosen: I know, and now I feel like it’s gonna be a whole different thing for the next album because she’s doing the country thing.

Stephanie Flynt McEben: I know.

Michelle Bishop: She’s doing a country album?

Jack Rosen: I think.

Michelle Bishop: Oh

Stephanie Flynt McEben: Yeah, we’ve gotten some teasers.

Michelle Bishop: It’s probably gonna be really good.

Stephanie Flynt McEben I could totally see that.

Michelle Bishop: I can see it.

Stephanie Flynt McEben I mean, it’s Chappell.

Michelle Bishop: So maybe the moral of this episode is that Chappell Roan needs to do a concert for us as a holiday gift.

Stephanie Flynt McEben Oh my gosh.

Michelle Bishop: If someone can just get this into her hands, please. Thank you.

Stephanie Flynt McEben I would, oh my gosh. I have the biggest smile on my face right now. I’m like imagining this, and like, my heart is so happy and full.

Jack Rosen: Chappell, come on, you know Tiny Desk? We have something similar called Tiny Conference Room where you perform in our conference room.

Stephanie Flynt McEben: Right, very tiny conference room, and we even have complimentary coffee.

Michelle Bishop: You could do like Tiny Accessible Desk, where we have those desks that can be raised or lowered for wheelchairs.

Stephanie Flynt McEben: Yes.

Michelle Bishop: We should start hosting Tiny Accessible Desk concerts. We’re definitely gonna get sued if we take that. We’re definitely gonna get sued if we do our own version of Tiny Desk concerts, right? That seems problematic.

Jack Rosen: That one might be pushing the line, but let’s see.

Stephanie Flynt McEben: Just apparently wanna get sued. ♪ We apparently want to get sued ♪ ♪ We apparently want to get sued ♪ ♪ We apparently want to get sued ♪ ♪ And we made it clear this episode ♪

Michelle Bishop: The number of times we told Stephanie she cannot sing Christmas carols on this episode.

Stephanie Flynt McEben: Hey, at least I didn’t do the 12 days of the P&As.

Michelle Bishop: Do not do it.

Jack Rosen: I was really hoping you had that ready for us.

Stephanie Flynt McEben: ♪ On the first day of Christmas ♪ ♪ NDRN gave to you ♪

Stephanie Flynt McEben: Oh, wow, y’all are actually listening. The people actually want this. I can’t remember what the first line was.

Michelle Bishop: I mean, it’s your moment. We both literally were just quiet, we were listening. We were gonna let you do your thing.

Stephanie Flynt McEben: I know, but like, y’all have been discouraging this since like day zero.

Michelle Bishop: And that’s because I’ve heard the lyrics and they weren’t great, but we were gonna let you do your thing.

Stephanie Flynt McEben: ♪ A membership organization ♪ ♪ On the second day of Christmas ♪ ♪ I need to find some words ♪

Jack Rosen: All right, maybe we can have this ready by next year’s Christmas.

Stephanie Flynt McEben: Yeah, no, that’s totally fair, that’s totally fair. I feel like at some point we should probably end the episode because, you know.

Michelle Bishop: Yeah.

Stephanie Flynt McEben: People might be annoyed with us. But we hope you enjoyed this fun Christmas special and getting to know us a little bit more, and yeah, we’ll be back with our regularly scheduled programming come January, am I right, guys?

Michelle Bishop: Wait, Stephanie, do you have a holiday joke?

Stephanie Flynt McEben: Oh, I have an encore joke.

Michelle Bishop: Okay, do it.

Stephanie Flynt McEben: All right, what do you get blind people for Christmas? There are listeners who probably have heard this if you’ve been an OG, longtime listener, but don’t ruin it for those of us who are new.

Michelle Bishop: And if not, we wanna remind you that Stephanie is blind and it’s okay for her to make blind jokes.

Stephanie Flynt McEben: Oh yeah, that’s a thing. I’m a blind person, so yeah. What y’all gonna get me for Christmas?

Jack Rosen: What are we gonna get you, Stephanie?

Stephanie Flynt McEben: Candy canes.

Jack Rosen: Oh my God.

Stephanie Flynt McEben: Blind people use candy canes.

Michelle Bishop: I asked for this.

Stephanie Flynt McEben: Yes, you did. It’s all right. Anyway, Jack, do you wanna tell the people where they can follow us?

Jack Rosen: Yes, you can follow us on Twitter, LinkedIn, Facebook, Instagram, Threads, Bluesky, YouTube, and the TikTok that we do not and will never use. I think they’re banning TikTok, so I finally outlasted you guys asking me to make TikToks.

Stephanie Flynt McEben: Okay, how many followers do we have on our TikTok? Before we go, do the people know?

Jack Rosen: I do not know if we have any.

Stephanie Flynt McEben: Okay, well, fair enough. Yeah, go follow us on TikTok so we have at least like two followers. Anyway, y’all, until next time.

Jack Rosen: And Stephanie, where can they email us?

Stephanie Flynt McEben: Oh yeah, I haven’t said that enough this episode, podcast@ndrn.org. That is P-O-D-C-A-S-T@N-D-R-N.O-R-G.

Michelle Bishop: Look at Stephanie taking the lead on this whole episode. I’m totally retiring after this, bye.

Stephanie Flynt McEben: Nope, nope, you’re not.

Michelle Bishop: No, I’m out, I’m out.

Stephanie Flynt McEben: Nope. Remember, you’re voter access and engagement manager, manager.

Michelle Bishop: It’s been fun, guys, oh, it’s been so lovely. I’ll be a listener in 2025.

Stephanie Flynt McEben: And you’ll continue.

Jack Rosen: You know, Stephanie, just yesterday, someone was telling me about an accessible audio editing software. I think you’ve got this from here.

Michelle Bishop: Oh, so are you gonna retire too, Jack?

Jack Rosen: Oh yeah, I’m retiring.

Stephanie Flynt McEben: Oh my God.

Michelle Bishop: All right.

Stephanie Flynt McEben: No.

Michelle Bishop: Stephanie, we’re so excited for you to have your own podcast.

Stephanie Flynt McEben: This is not the Stephanie Show, I object.

Michelle Bishop: Oh, we can call it the Stephanie Show and everything. I can’t wait to listen to the Stephanie show in 2025.

Stephanie Flynt McEben: Oh, that’s cute. Stephanie’s retiring if it becomes the Stephanie Show.

Michelle Bishop: It’s just gonna be Stephanie singing for you and making up jokes.

Stephanie Flynt McEben:  ♪ On the first day of Christmas ♪

Stephanie Flynt McEben: Yeah, no, the people do not want that.

Michelle Bishop: You can’t even stop yourself.

Stephanie Flynt McEben: I know, but the people do not want that. We have to give the people what they want, and that is the pro host, that is Michelle, and that is me-ish, kind of. I don’t know, people probably think I’m a ding-dong, but anyway.

Michelle Bishop: So we just wanna say Happy Holidays to all of you, no matter which of the million holidays you celebrate between November and January, and the Stephanie show coming to you in 2025.

Stephanie Flynt McEben: No, NDRN is, or NDR is staying a thing. Anyway, until next time y’all, bye.

Friend of the pod and NDRN colleague Monica Wiley joins us to talk about the role models that inspired her own activism.

Full Transcript Available at: https://www.ndrn.org/resource/ndr-feb25/

Stephanie Flynt McEben:

All righty, folks, so we have the pleasure and privilege to sit down with one of our lovely colleagues, Monica Wiley who is going to, talk about Fannie Lou Hamer and the contributions and how she paved the way, for individuals when it came to various advocacy within the disability rights movement. And just, just various things along that nature. Monica, we are so excited to have you.

Monica Wiley:

Thank you so much Stephanie, for that warm introduction. I am delighted to be here and to talk about Fannie Lou Hamer and all of the great advocacy work that she has done, and pave the way for someone like myself to continue in that advocacy and that activism world. So I’m delighted to to be here and speak about her and, another individual as well that we all have, grown to love and definitely appreciate that, unfortunately, is no longer with us, but his legacy has left a, a blueprint, a print, in the advocacy world to make sure that we continue to to advocate as much as possible.

Stephanie Flynt McEben:

So people with disabilities. Absolutely. And just so just some quick background, because I know that, you know, some folks know about Fannie Lou Hamer is contributions, but but would love to, you know, if you could give some background on the contributions that that Fannie Lou Hamer, Hamer has made, to the disability rights movement, but also to what contributions particularly stuck out to you personally?

Monica Wiley:

Thank you so much, Stephanie, for the question. I love this question and happy to share about Fannie Lou Hamer. So let me answer the first part, of the question. Fannie Lou Hamer was a, a woman, a pioneer in the advocacy movement, that during the 1960s. And what I liked about Fannie Lou Hamer was that while she was a fierce advocate for justice rights, disability rights, she was a person who had a disability, who was born with polio, had polio at the age of two or maybe three. I think it was around 2 or 3 years old, and she walked with a visible limp. But what was amazing to me was that while she was building and coalition building and having others born into the advocacy movement, to to fight for advocacy and disability rights, they looked beyond her disability. And that was what was so impressive to me. And that is what I liked about her as well, is that while she had this disability and she walked, uneven because she walk with a limp because of the polio, she did not let that stop her. And I feel that that is the fuel that we have today, in terms of the advocacy world, is that we don’t let that stop us. And I believe that’s what made her so impressive, even during the 1960s, when she gave such an impassioned speech, about advocacy and about rights and that is what that’s so impressive. And I think that is what the disability community even finds impressive about her today, because we tend to love to adopt her slogan, which is what makes us so, so incredible as a community that we’re sick and tired of being sick and tired and and that slogan can be used for so many different and so many ways, for so many different reasons. But then the disability community and then the advocacy community for disability rights, sick and tired of being sick and tired means that we’re sick and tired of not just being considered as as a community that is whole because we are whole human beings like everyone else. And so we are sick and tired of not being considered as whole. And that’s what Fannie Lou Hamer was about. That’s what her advocacy was about. And that is why we are connected to a man and a black woman with a disability. And I do, have a visible disability because I walk with a cane when I am not in my travel scooter. And today, yes, I still get some looks and stares.But when I open my mouth and I talk about the importance of us coming together to strengthen advocacy for disability rights, that it’s when you’re and you’re then beginning to see that they can look beyond your disability, like the way that they did during that time in the 1960s, how they look beyond Fannie Lou same or disability and saw her as a fierce, true leader and that in that field. And so that is what connects me to her in so many ways. She is one of my sheroes, and I really feel that the disability community likes about her as well, and her advocacy is the fact that she even look beyond her own disability and then allow others to see that disability prevent her from her great work in the advocacy world.

Stephanie Flynt McEben:

I absolutely agree with that 100%. And, you know, I think one thing that I personally appreciate about Fannie Lou Hamer is the fact that, you know, she wasn’t all talk. Right. And I feel like sometimes, you know, folks, while they are well-meaning, you know, sometimes people will say things and not act on them. And when she said, I’m sick and tired of being so sick and tired, she acted on that.

Monica Wiley:

She worked, to try to, you know, make this world a better place for for all of us and various communities. Absolutely, absolutely. Beautifully said, Stephanie, that she did and that that slogan made her again, the, the the desire every single day to get up and and make society and make our community just a better place overall and a better, just a better community overall and a better society overall, So the betterment of our community and society as a whole. So absolutely, I agree with you 100%,

Jack Rosen:

Thanks for sharing that, Monica. I was wondering if you could tell us who else has inspired you and your journey as an activist?

Monica Wiley:

Thank you for the question, Jack. Yes, so many have inspired me, but the the other person that comes to mind when I think of my work in the advocacy world and disability rights is the late Congressman John Lewis, and may he rest in power. Congressman John Lewis was a very to some amazing, amazing, man and leader from the South. And I always love to say, one of his, his, his mantras, one of his slogans, which is, you know, it’s nothing wrong with getting into good trouble. And that’s how I look at disability rights and and advocacy. It’s getting into good trouble. Because the trouble that we are getting into is good. It is for the betterment of our community, for the betterment of society, for our, for just the advocacy that we’re doing to be beneficial for for us and for everyone that is a part of our community connected to our community. So advocacy is good. Trouble getting into good trouble, making sure that we eliminate the bad troubles and creating some good trouble. And so that’s what I loved about Congressman John Lewis, was that he, he was proud to be a person that was about making history and history in a sense of good trouble. For those who don’t may not know about Congressman John Lewis background, Congressman John Lewis, was such a, a fierce, advocate for, for, for rights, just, just, just basic human rights. But what he, is highly revered, of is him leading about 600 people across the Edmund Pettus Bridge in Selma to fight for the rights, for for voting rights. And while it did not go the way that, that we, we had hoped for or especially at what they hoped for, that during that time, although they were fighting for good trouble. It didn’t go as well, that they had anticipated. But the beauty of the good trouble that came out of that situation, because there was still some good trouble that, that is with us today. The beauty, about that was that while they encountered some hardships, and some struggles as they cross, the Edmund Pettus Bridge in Selma, that definitely led to voting rights and and just disability rights because he experienced, disability during that time. During that period, because of what happened to him. But he didn’t let that disability stop him. He continued to fight for disability rights and for for advocacy, and ended up becoming a member of Congress, when he ran for Congress, and Georgia. So Congressman John Lewis and Anthony Lou Hamer were both pioneers and individuals and the advocacy world and the voting rights world. And also we and the disability community have adopted, that, that that slogan, that it’s it’s always good to get into some good trouble. Never be afraid, to get into some good trouble. Are the two pioneers that I championed and and the work that I do that keeps me grounded. And and positivity. In terms of me fighting for disability rights, for my rights and for the continuation and the support of advocacy for my community and for us all.

Stephanie Flynt McEben:

Okay, I love that. And can I just say that advocacy is good trouble or advocacy makes good trouble needs to be one of the t shirts that we sell in our merch shop. Know what I like that I do like that I didn’t even realize that effective. I would try to be tied to my words. I’m like, go, Monica, go like yes, oh my gosh, I’m totally here for it. Of course we should totally, you know, attribute like, you know, the paraphrase to you as well. Like I am totally here for this. I like that

Monica Wiley:

Jack did that answer your question?

Jack Rosen:

It did. Thanks for coming on today, Monica, do you have any closing thoughts?

Monica Wiley:

I was going to say no, but yes, I do. I just first, I want to thank you, to, this this podcast to my colleagues for having me come on here to talk about two amazing leaders, that, that we’re paying respects to for their contributions to the advocacy world. And may we just continue to stand on their shoulders and continue to be their, their biggest accomplishments, because this is what they wanted to see. And I hope that we just continue to think of them as we continue to run across some obstacles and some hurdles and some mountains at times. But think about those mountains and hurdles that they came across. But they still continued. They still continue to to fight for disability rights and and for advocacy. And so I lead with saying that may we continue to do the same and maybe continue to make them proud and continue the work that they left for us to do, because it is up to us to continue this mission and this work. And so I thank you. And it’s a pleasure, as always, to be, with my colleagues, Jack and Stephanie here on this podcast. Have a great day.

Stephanie Flynt McEben:

Thank you so, so much, Monica. We totally, as always, enjoy having you, as one of our guests on the podcast. And of course, you know, you are always welcome back, I appreciate that.

Monica Wiley:

I look forward to coming back.

Stephanie Flynt:

Yaaaay I love this. We have a commitment.

Jack Rosen:

And as always, you can follow us on threads, Twitter, blue Sky, LinkedIn, Facebook, Instagram, and the TikTok that we do not use that I do not remember the account name of you, and you can email us at podcast@ndrn.org. Until next time, folks.

Friend of the pod and NDRN alumni Ian Watlington get’s back on his advocacy horse to talk to us about the impact sudden weather events like the recent DC blizzard can have on folks with disabilities.

Full Transcript available at: https://www.ndrn.org/resource/ndr-jan25/

 

Jack Rosen:

Yeah, I guess we’re just doing this. We don’t know where Michelle is. She has abandoned us.

Stephanie Flynt McEben:

That’s fine. I feel very abandoned right now.

Jack Rosen:

If she’s too cool for us, if this is like John Lennon leaving the Beatles, she’s going to do a new experimental podcast.

Stephanie Flynt McEben:

Oh, I have a song for that. This is the potential breakup song. I don’t think Allie and AJ are going to sue us.

Jack Rosen:

She’s not even here to stop us from getting sued.

Stephanie Flynt McEben:

I know. And she’s supposed to be like fancy, legally something.

Jack Rosen:

I know. So now the hosts of the podcast are me, you and Nala.

Stephanie Flynt McEben:

Hey, you’re now a host since Michelle’s not here to stop it. You are a host.

Jack Rosen:

I’m finally free of Michelle bullying me about not being a host. There is that.

Stephanie Flynt McEben:

Love it.

Should I kick us off? Or I don’t even… Wait, which-

Jack Rosen:

It’s a whole new era of the podcast. I don’t even know if we’re kicking it off or just doing sort of a stream of consciousness thing, and then eventually we get to the interview.

Stephanie Flynt McEben:

Yeah, that sounds great. We’re going to hear from our pal Ian Watlington about all things snow and navigating somebody who uses a wheelchair in the city, and all of the chicken nugget-like things that people will sometimes put on curb cuts. Just a note to folks who may not realize, don’t put snow on curb cuts, because then it turns into ice, and then that could really hurt disabled people. So let’s make that our 2025 resolution to make sure that we protect the lives of all people.

Jack Rosen:

Yes. In fact, I’ll go a step further. Don’t put anything on the curb cuts really.

Stephanie Flynt McEben:

Thank you. Or especially those scooters.

Jack Rosen:

Those should be on them, the little bumps that I’m forgetting the term for, but nothing else.

Stephanie Flynt McEben:

The truncated domes, I think is what they’re called?

Jack Rosen:

Is that… If only we had someone who knew a ton about the ADA, mostly through voting, but she knows the ADA and could tell us what those are called.

Stephanie Flynt McEben:

Right.

Jack Rosen:

Anyway, enjoy our interview with friend of the pod and NDRN alumni, Ian.

Michelle Bishop:

So Ian, thank you so much for joining us for the podcast today. This is our special snowed in episode because of the rather unexpected amount of snow that we’ve gotten in the DC area. This past week has us all shut into our homes. And I’m betting it did the same thing to you.

Ian Watlington:

Exactly. I’ve been home and just hanging out. Well, I’ve been working. Let’s not discredit that, but I’ve been working, but pretty much stuck in my apartment.

Michelle Bishop:

Same here. Honestly, I tried yesterday to go outside for the first time to brush off my car, and in attempting to clean the snow off my car, I fell.

Ian Watlington:

Oh, no.

Michelle Bishop:

I know. Which you know is a very serious issue in the life of a person with a disability. You can’t just go outside in all this.

Stephanie Flynt McEben:

Ian, the only time I’ve gone out is to play Frisbee with my dog because she’s obsessed with playing Frisbee in the snow.

Michelle Bishop:

I mean, she’s a dog. I respect it. But can I tell you, the only response I got from my family about me falling while trying to brush off my car is, “I hope one of your neighbors captured it on their Ring cameras.”

Ian Watlington:

Oh, well that’s not very loving.

Michelle Bishop:

Mom.

Ian Watlington:

Yeah.

Stephanie Flynt McEben:

I was about to say, was that Carol? Because that sounds like a Carol response.

Michelle Bishop:

You know she’s a savage. So yes.

Stephanie Flynt McEben:

Shout out to Carol.

Ian Watlington:

She’s spicy.

Michelle Bishop:

So let’s talk about it, Ian. We wanted to pull you in on this episode as our resident expert on being snowed in as a person with a disability. Because you’ve been in the DMV for years now. You have gone through many… Also people don’t know in the DC area, we like to give ridiculous names anytime a single snowflake falls from the sky, Snowmageddon, Snowpocalypse, it’s very dramatic around here. And you’ve weathered a bunch of those.

Ian Watlington:

Right.

Michelle Bishop:

And talk a little bit about what it’s like as a person with a disability, especially the preparedness and response measures that we see from not just DC, we’re not here picking necessarily on the District of Columbia, from a lot of local governments in terms of their snow maintenance.

Ian Watlington:

Well, yeah. I wasn’t here for Snowmageddon, I don’t think, but I was here for Snow Apocalypse or however we called it. You’re exactly right. We come up with ridiculous names. But no matter… I mean, if a significant amount of snow falls, the lack of planning becomes very obvious rather quickly because then you have lovely, and I support my fellow drivers as much as I can, but when they start doing the streets, it brushes all of that snow debris, which is now a combination of snow and ice, can’t just have snow anymore. We have to have ice because they wait a while, and it goes right up on the curb cut. It’s like perfectly placed to do that. And I have made a big stink about this for many years because…

This one’s a little bit different because there’s a lot of ice. And I don’t know how my new motorized chair does with that, but I’m assuming not so well, so I’m being very careful. But when it’s time to get out of the house, you shouldn’t still have an ice block of slush and ice and dirt and whatever at the curb. And it’s just like nobody thinks about it. It’s just like, “Well, I guess they think I’ll just go around it somehow,” but I’m not sure.

Stephanie Flynt McEben:

Well, also… Oh, I’m sorry, Ian.

Ian Watlington:

No, it’s okay, Stephanie. I’m just not sure what their logic is or what they think or if they’re even thinking of us at all.

Stephanie Flynt McEben:

Well, that’s what I want to know. Isn’t it common… Because I know that I’ve seen it done where they will literally shovel the snow onto the curb cuts. There’s snow already there, of course. But I’ve heard about different folks having to deal with snow that is being shoveled even more onto the curb cuts. Is that something that you’ve experienced?

Ian Watlington:

I’ve mainly experienced the snow shovels on the street clearings covering the curb cuts. But I know a lot of times I have friends that live in suburbia, and a lot of times a neighbor will be so kind to put their snow on a ramp or a curb cut. So it’s an issue that people think it’s just a lovely place to put the snow. And what bothers me is nobody seems to care. And what I don’t understand further is that they’re creating more of a problem for themselves in the future. So for example, if I were to go outside and I were to try to get around the massive curb cut snow ice ball thingy, I’d most likely get stuck. And then who do I call? Except when I’ve gotten stuck before in other instances, which thankfully hasn’t been a lot, you call the fire department. The fire department can just get you out of that one little situation, it can’t take care of the weather. But again, the first responders even aren’t prepared.

Michelle Bishop:

Nor do we need to give our first responders more work to do in the middle of a weather emergency.

Stephanie Flynt McEben:

Right.

Ian Watlington:

Exactly.

Michelle Bishop:

Those things that are preventable, we should probably try to prevent, because they’ve got a lot on their plates when the weather goes wrong.

Ian Watlington:

Right, that’s why I’m hanging out at home. Exactly. I’m not trying to give anybody any extra work. I just wish I felt relevant. Does that make sense?

Michelle Bishop:

It does. Because I think something you said in the beginning to me is true. I think they’re not thinking about us at all. I think people are thinking they see a convenient place to pile the snow and they’re not thinking, “There’s probably a reason we built the curb that way. Why would you take the extra step of making it cut away if someone didn’t need it?” I think they’re not thinking about us.

Ian Watlington:

No. No, I don’t think so either. And I’ve tried calling the city council. I don’t know how many years ago. If you can believe this, I’ve been in DC now for 13 years, and so I can’t remember exactly when this was, but I was on the local news about the curb cut issue. So this is an issue near and dear to my heart, but I feel like I’m out of… I’m a professional advocate, but I feel like I’m out of strategies because I don’t know how to make it seem important to really focus on this issue.

Michelle Bishop:

Yeah, that makes sense to me. And I think it’s not even just the inconvenience of it, right? It’s really inconvenient if you can’t get out of your house. It’s inconvenient if you get stuck somewhere trying to get over some snow and the fire department has to get you out and all of that. But it’s also dangerous.

Ian Watlington:

Right.

Michelle Bishop:

In a number of ways, it’s incredibly dangerous. Wheelchairs and scooters that go sliding on ice can have serious consequences. A wheelchair that gets stuck in the snow could tip, and the person who relies on it could fall out and get injured. And in my experience, a lot of people who use wheelchairs and scooters end up rolling in the street, which is dangerous enough at any time, but especially in snow conditions where the roads are already going to be narrower, because snow piled up on the side of the roads, and the roads are slick, and cars don’t necessarily have the same level of control, and they can’t stop as fast. It’s dangerous. People could get hurt. And there are people who get hit in the street in their wheelchairs and die. It’s such a serious issue, and I agree, it’s really frustrating that we can’t get a spotlight put on it.

Ian Watlington:

There’s an acquaintance of mine in the Denver area, which is another area that experiences snow a little bit more often, but they’re not as on top of it as you might think either. And I have an acquaintance that did decide to go in the street and was unfortunately killed, because nobody could see him or people stopped but slipped and hit him. So I mean, that’s the thing about it, is it’s more than an inconvenience. It’s a issue of public safety. Because everybody’s inconvenienced during a blizzard or a big snow event, I should say, because this isn’t a blizzard I would call, but it’s significant enough to disrupt lives and people still need to get to doctors and to grocery stores. I was lucky this time, I really, really planned ahead and got my fridge stocked and all of that, so I would be able to be in the apartment comfortably at least.

Michelle Bishop:

That’s true. Although we’re also fortunate that when the weather takes a turn, we get to work from home. And not everyone can do that. There are disabled people who are essential workers that have to go into the workplace even when it snows.

Ian Watlington:

Yep, that is exactly right. And yeah, maybe I’ll get back on… This is kind of inspiring me to get back on my advocacy horse about this. I just said the word advocacy horse. Wow.

Michelle Bishop:

You did.

Stephanie Flynt McEben:

I love it though.

Ian Watlington:

Yeah.

Michelle Bishop:

It’s complicated with the wheelchair and the horse, it’s becoming very complicated metaphor.

Ian Watlington:

Yeah, it is. I did kind of muddle things and complicate things all with one metaphor. But maybe I’ll get on it again because it’s just frustrating. And one thing, people with disabilities share a lot of things in common because of what it’s like to live with a disability regardless of what the disability is. But one of the things that I think a lot of us share is the feeling of not being in control, because someone else is in charge of whether you get out of your apartment, whether you have medical supplies. We’re used to having to rely on others to get our basic needs met because we don’t have a choice. But I think it’s really when we can, we should help folks with disabilities out so they don’t have to feel out a control or trapped. That’s what you all do at NDRN is help people get their agency back and their control back.

But that’s something I think that people with disabilities often share is just that lack of control of your own destiny or your own future, or whether you’re going to get to go to the grocery store. It can be as big or as little of a thing as you want, whether it’s the grocery store, your own destiny, or whatever. But it’s that lack of control that I think is particularly what gives me the anxiety and what makes me feel less than comfortable in my own home or in my own apartment, is just that anxiety of, well, I have to be here because of circumstances and what if something happens? So I try to push some of those thoughts in the back of my mind because I think I have to keep moving forward. But it would be nice to have a little bit more empathy and a little bit more action on the city’s part to eliminate some of the problems and have an idea of what it really causes as far as stress and anxiety.

Michelle Bishop:

The whole time that you’re talking about this, the only thing I can keep seeing in my mind is… I think people know I grew up in upstate New York, and when I say upstate New York, I mean up upstate, like not that far from Canada upstate New York.

Ian Watlington:

Right.

Michelle Bishop:

The very snowy part of New York, where snowstorms are a real regular part of your life, which is part of the reason I don’t go out that much when it snows here because I don’t trust drivers who didn’t grow up in snowy areas to be on the road with me. Because you learn and you unfortunately learn some of it through trial and error, and I have been behind the wheel before and lost control of my vehicle on ice. And it is the single most terrifying experience. You’re in a car, you can’t control where it’s going, you can’t stop it from moving. You just really essentially have to wait it out. I spun out on a bridge once. I, actually in the same snowstorm, got on the highway and my car had turned around backwards. It’s terrifying. And no one should feel that feeling, that loss of control in their own lives.

Ian Watlington:

That’s how I feel. That’s certainly my feeling. Again, not all of us get to have control all the time, but this is a chronic thing that people with disability experience for a variety of reasons. So some of the issues that we can control and mitigate some of that feeling of lack of control, we ought to do it. And again, it’s how do we make this important enough to be heard? That’s my big question.

Stephanie Flynt McEben:

Yeah. And I want to go back to your point about control, right? Because while I understand that we can’t have control of all the things, there’s of course a lot of attention paid to the roads in order to ensure that they are clear. And the fact that, I’m not saying don’t clear the roads, don’t come at me transportation driver enforcers or whatever they call them. But what I am saying is that it’s important for us to ensure equal access for disabled people who utilize those curb cuts. And I think even looking at different things of what can we do? I mean, of course we work to educate and those types of things, but I think that even hearing you talk about writing to your city, to the city council members and trying to continue to hit those points home, I think that, while different things like that may not seem like they’re working the first time or even the second time, I think that sometimes what it comes down to is trying to figure out where to educate the people that need that education.

Ian Watlington:

Exactly. I couldn’t agree more.

Michelle Bishop:

I got to say advocacy horse, Ian, is my favorite version.

Stephanie Flynt McEben:

I’m here for that term.

Jack Rosen:

We will be generating that in chatGPT and using it as the promotional art for this episode.

Ian Watlington:

The advocacy horse.

Michelle Bishop:

With Ian. I think it needs to be Ian and the advocacy horse in the image.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

This is what AI was created for, honestly.

Ian Watlington:

Right.

Michelle Bishop:

This is how AI makes our lives better.

Stephanie Flynt McEben:

For this specific moment.

Ian Watlington:

I’m so glad that I’ve provided this additional fodder for you all. I think it’s hilarious. I appreciate you going forward with the advocacy horse.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

I remember you being on the news back in the day, Ian. I do remember that.

Ian Watlington:

Do you remember that? Yeah.

Michelle Bishop:

I do remember that news story. It was a good story. It was a good story. It takes so much to get people to stop and think about disability when they go about doing the things that they do. I don’t know if you guys feel this way. I often feel like if we’re not at the table reminding people about disability, and sometimes I say 90% of my job is showing up to meetings and saying, “You can’t do that because it’s not accessible.”

Stephanie Flynt McEben:

Retweet.

Michelle Bishop:

Right? Because people, they don’t think about it when we’re out there.

Stephanie Flynt McEben:

No.

Michelle Bishop:

I feel we have to go around behind the people who clear the sidewalks in the streets and be like, “You can’t put it there.”

Stephanie Flynt McEben:

It’s like if you’re not at the table, you’re on the menu at that point, or even off the menu in some of these circumstances.

Michelle Bishop:

The accuracy. And we have to figure something out because we don’t necessarily have the capacity to have… Although it would be fun to stage an action where a disabled person follows every city worker in cities across the country as they clear snow and reminds them not to put it on the curb cut.

Stephanie Flynt McEben:

Oh my gosh. Kind of like Live PD, but let’s make it snow insured, disabled rights edition, and then we’re going back and forth from one city feed. Let’s go to Denver where so-and-so is following this around, and let’s go to Washington DC where so-and-so is following these city workers around. Oh my gosh. I think we just came up with a million dollar show idea. Live Snow.

Michelle Bishop:

Can you imagine [inaudible 00:19:35].

Jack Rosen:

I might have to pitch this as my next video project.

Michelle Bishop:

Yes.

Stephanie Flynt McEben:

Oh, wait. You can call it The More You Snow. Get it? Like know.

Michelle Bishop:

Stephanie, I’m not going to lie, that one was pretty good.

Stephanie Flynt McEben:

Thank you.

Jack Rosen:

Yeah. That one got a chuckle out of me.

Michelle Bishop:

I like it. The more you know, like those things they used to do on TV with the shooting… Yes.

Stephanie Flynt McEben:

Yes, The More You Snow.

Michelle Bishop:

I like it. I dig it. Actually, Ian and I have done something similar before. Ian and I did a great piece with NPR on All Things Considered years ago where we went around with a reporter to polling places and literally showed her how they were inaccessible. And it was fascinating. There was a ramp that Ian went up, and then when he opened the door, it basically closes off the ramp so he can’t get inside.

Ian Watlington:

Yes

Stephanie Flynt McEben:

What?

Michelle Bishop:

Yeah. Some of the biggest design fails you can imagine that people just don’t-

Ian Watlington:

Right. Yeah. You opened up the door and it hit the chair and block the ramp and you really couldn’t get in because it opened outward. That was… Yeah. I work at Amtrak now, and so I work with engineers like crazy and you just… And architects, and you just see some of the failures of engineering. I mean, I love these folks, but it’s just like, “What were you thinking?” And they probably weren’t, but yeah, there’s just, again, it’s that lack of thought that is frustrating.

Michelle Bishop:

I think that’s really true. I have a friend who’s an engineer who makes voting systems, and he told me one time in conversation, he said, “Michelle, a solution that works for 75 to 80% of the population is a huge success as an engineer.” And I was like, “But in civil rights, that’s a failure.”

Ian Watlington:

Right, exactly.

Michelle Bishop:

It’s not everybody. It’s just completely different worlds. So I can imagine an engineering solution to snow removal that works for 80% of the people would seem great to an engineer except to the 25% of the population that have disabilities that can’t use it.

Ian Watlington:

Right.

Stephanie Flynt McEben:

And still growing.

Ian Watlington:

I mean, it’s just like it crosses… People with disabilities aren’t on the train as much as people without disability, duh. That would be the case. So sometimes the answer I get is, “Well, we have low ridership with people with disabilities,” and it’s my job to say, “So that ridership doesn’t count?” And I think that’s what we’re all getting at here, is we want to be counted and among the people that you consider when you make these key decisions. I don’t think that’s too much to ask either.

Michelle Bishop:

Oh, see, now I’m going to get on my advocacy horse. Because what I feel like I hear from that is also that people with disabilities should run for local offices and be the decision makers.

Ian Watlington:

Yes.

Michelle Bishop:

These things are hyper local. You could run for your city council or something like that and have a real impact. And like Stephanie said, be at the table instead of on the menu. So a little food for thought for some of our disabled listeners around the country.

Ian Watlington:

Yeah, I think you’re exactly right. Because what do we need? We need power. I mean, I hate to put it that way, that basically, but it is about who has power to make these decisions. And so we do need to run for office and become journalists and do the things that can really shed light and give people power to make better decisions.

Michelle Bishop:

Y’all, did we talk about all the things?

Stephanie Flynt McEben:

I think so.

Michelle Bishop:

Let’s talk about personal… Before we let go, Ian, let’s talk about personal snow day preparations. I want to hear what y’all bought at the grocery store before the snow came.

Ian Watlington:

Since going sober, I’ve become addicted to soda. It’s got to be addicted to something.

Michelle Bishop:

That’s hilarious. So you just have a fridge full of soda?

Ian Watlington:

So I have a fridge full of soda, and I have microwave dinners and lots of peanut butter and jelly.

Michelle Bishop:

I have so much respect for that. The last time I was in line at the grocery store before a snow storm came, I was like, “Man, I love DC, because everybody in line has nothing but beer and ice cream in their cart.”

Ian Watlington:

Yes.

Michelle Bishop:

No practical items whatsoever. And I’m going to say 20 bucks says Jack has pizza.

Jack Rosen:

Would you like me to Venmo it to you or?

Stephanie Flynt McEben:

Wow. Yo, pizza is essential, okay? The way that I prepped, so I got some sparkling water, because we ended up going to Wegmans, and Wegmans has the best sparkling water, so I got sparkling water-

Michelle Bishop:

You know I’m from upstate New York, right? I already told you I’m from upstate New York. So yes, shout out to Wegmans.

Stephanie Flynt McEben:

Yes. Their sparkling water is like the bomb.com double click.

Michelle Bishop:

Wegmans is amazing.

Stephanie Flynt McEben:

And so I got a lot of sparkling water. I got some Ben and Jerry’s Boston Cream ice cream topped, so there’s a huge top of chocolate coating on the top. I got some frozen pizzas, and then I got a veggie tray as well as some vegan mayonnaise. Follow Your Heart vegan mayonnaise is my favorite, so that I could make carrot tuna. And let me tell y’all, after this, I’m probably going to get some carrot tuna because that sounds so good right now.

Michelle Bishop:

The way y’all have, just Stephanie and Jack alone, have such different shopping priorities.

Ian Watlington:

Really.

Michelle Bishop:

I got mint chocolate chip ice cream sandwiches.

Stephanie Flynt McEben:

Ooh.

Ian Watlington:

Oh.

Michelle Bishop:

Cold weather makes me crave ice cream, which I realize is weird.

Stephanie Flynt McEben:

No, it’s not weird. I have to have something. Oh, and we got a fruit tray because I was trying to be healthy. Well, I also got the veggie tray, so I don’t know why I’m defending myself over here.

Michelle Bishop:

And vegan mayo. I don’t think you actually need to defend your healthy choices at all, Stephanie.

Stephanie Flynt McEben:

Oh my god. Vegan mayo is so good. You can make a quick garlic aioli or you can put some… Here’s my Maryland coming out. I like to put some Old Bay in my vegan mayo, and I will dip carrots in that all day long.

Michelle Bishop:

Not Old Bay vegan mayo. Okay, well, now we’re going to have to do some sort of weird Stephanie vegan cooking show.

Stephanie Flynt McEben:

Okay. I’m here for it. I’ve been trying to master a vegan mac and cheese recipe for like ever, and I cannot get it perfect, and it’s driving me bananas. I mean, I make pretty decent vegan mac and cheese, but I want to make perfect vegan mac and cheese.

Michelle Bishop:

I suspect it’s probably the lack of cheese.

Stephanie Flynt McEben:

Well, no. There’s like… No.

Ian Watlington:

Sorry that was funny.

Stephanie Flynt McEben:

That is pretty funny. I will give Michelle that.

Michelle Bishop:

I used to be vegan so I can pick on it.

Stephanie Flynt McEben:

I mean, look, vegan mac and cheese if done right is really good. It’s obviously different from actual regular macaroni cheese, but it’s pretty good. I’ve figured out a college kid type of vegan mac and cheese that I like, which is garlic powder with, you get some ramen noodles, right? And then you make the ramen noodles in the microwave or whatever, whatever. Don’t pour the sodium seasoning on there, but go ahead and stir in some vegan butter, some salt, some garlic powder, and some nutritional yeast. The nutritional yeast will thicken it up and it tastes like cheap college kid vegan mac and cheese.

Michelle Bishop:

I just didn’t wake up this morning thinking I’d hear someone say nutritional yeast in a sentence.

Stephanie Flynt McEben:

I love Noocho. It’s so good.

Jack Rosen:

I did not know that was a thing.

Stephanie Flynt McEben:

What?

Michelle Bishop:

How does that shock you?

Ian Watlington:

I didn’t really know that either.

Michelle Bishop:

You’ve met Jack. That should not be shocking.

Stephanie Flynt McEben:

Noocho is so good. Okay? I will have to make some Noocho stuff and bring it up. Like Noocho on kale chips is chef’s kiss.

Michelle Bishop:

I feel like it’s settled the next time it snows, we’re all camping out at Stephanie and Quinn’s, and they’re just going to make us some weird vegan recipes.

Stephanie Flynt McEben:

Quinn will be out because Quinn is like, “Nope, don’t want to eat the vegan stuff.” But Quinn will eat the vegetarian stuff.

Michelle Bishop:

I will bring the nutritional yeast.

Stephanie Flynt McEben:

Yes.

Ian Watlington:

Wow.

Michelle Bishop:

Oh my gosh. Look, this conversation has gone away off the rails. Okay, but-

Stephanie Flynt McEben:

The rails, and Ian works for Amtrak. It’s gone off the rails.

Michelle Bishop:

Oh, no did I do a Stephanie Pun by accident? Oh, no,

Stephanie Flynt McEben:

No. You did one earlier. You said weather, like weathering the storm.

Michelle Bishop:

I heard that one when it came out of my mouth. I was so proud of you for not pointing it out.

Stephanie Flynt McEben:

I had to laugh though. I was like, “Oh my gosh. I hope nobody thinks that I’m laughing at Ian.”

Michelle Bishop:

Ian, lots of bad railway puns in your business?

Ian Watlington:

Oh my God, there’s so many. Of course, I’m not going to be able to think of…

Stephanie Flynt McEben:

You also have lots of training.

Ian Watlington:

Oh God, training, off track, off the rails. Those are the big ones.

Michelle Bishop:

Speaking of bad jokes… Well, first I’ll say, Ian, thank you so much for joining us. This was amazing.

Ian Watlington:

Thank you.

Stephanie Flynt McEben:

It was, thank you.

Ian Watlington:

I so enjoy working with you guys. I really do. So keep up the good work and I’ll let you know about if I get up on my advocacy horse.

Stephanie Flynt McEben:

Yes, please.

Michelle Bishop:

So Stephanie usually ends the episodes with, I almost said a bad joke. I’ll just say a joke. If you want to hang out and hear Stephanie’s joke of the month.

Stephanie Flynt McEben:

Okay. I don’t know what my joke is yet because I didn’t know we were doing intros and outros today.

Michelle Bishop:

We’re not really, I just was-

Stephanie Flynt McEben:

I didn’t come prepared. I mean I they could do an encore joke.

Michelle Bishop:

[inaudible 00:29:10] you’ve been very punny today. You what?

Stephanie Flynt McEben:

I can do an encore joke from two years ago. What do you call someone who steals a bunch of fruits?

Jack Rosen:

What?

Stephanie Flynt McEben:

A smoothie criminal.

Jack Rosen:

Okay. And Stephanie, who did the song you’re thinking of?

Stephanie Flynt McEben:

Michael Jackson.

Jack Rosen:

There we go, okay.

Michelle Bishop:

Oh, no. I blocked that out.

Jack Rosen:

I’ll never forget. Ian, two years ago, Stephanie told this joke and then said, “You know, Smoothie Criminal, like the song by Santana.”

Ian Watlington:

Right. Oh, wow.

Jack Rosen:

Yeah.

Michelle Bishop:

Yeah. It was a whole thing. I clearly blocked it out.

Ian Watlington:

That happened.

Michelle Bishop:

It did.

Stephanie Flynt McEben:

What can I say? It was a thriller.

Ian Watlington:

Oh man, I got to go.

*Outro Music Plays*