National Disability Radio – Détails, épisodes et analyse

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.