Explorez tous les épisodes du podcast Encouraging Abilities Podcast

In this episode, we connect with North Vancouver mom, author, and advocate Carmen G. Farrell. From driving change in her son's school to continuing to champion advocacy, it's proof that inclusion doesn't just create allies, it creates bonds that stand the test of time.

Max Brault was instrumental in helping create the Accessibility Canada Act. While he admits we might not hit the lofty goal of a completely accessible Canada by 2040, the future for people with disabilities remains bright. We caught up with him to talk about his book, "The Race to the Starting Line."

The federal government wants to cut 15% in spending for certain programs and services. Advocates are concerned about people with disabilities losing their jobs before anyone else. We chat with Rabia Khedr, National Director of Disability Without Poverty, about disability employment and the new Canada Disability Benefit.

Navigating this often troubled world can be difficult. As an Autistic person who sees things differently, it can be an obstacle course when it comes to even the simple things like making friends. To build herself up and understand her place in the world is the author and person with autism, Keara Farnan.

ARFID - Avoidant/Restrictive Food Intake Disorder can affect neurodiverse populations more often than typically developed individuals. In this podcast, we chat with Lauren Hershfield and Elise Fairey, who lead a team of experts in diet and nutrition with their business “The Feeding Group”. Their team supports families who have the disorder to lead happier and healthier lives. 

Making a movie is tough. Making one about one's life experiences through the lens of autism, even tougher. We caught up with Austin Wolf, writer and producer of an upcoming independent film, Wally Jackson and the Probability of Love and Car Accidents, which he hopes adds to the greater understanding of the neurodiversity community. And, you know, reaching for your goals and all that...

From writing blogs for the Canadian Down Syndrome Society to planning an autobiography, CDSS Awareness Leader, Paul Sawka does it all. We caught up with the staunch self-advocate in Calgary.

Receiving the news that your unborn child has Down syndrome can be a shock to parents. In this Encouraging Abilities podcast, we chat with author Adelle Purdham and her emotionally driven book about what it's like as a parent raising a child with the condition, and how most issues are created largely within ourselves.

Not your typical high school students. Jora Singh Nahal and Inbal Tzafrir are motivated and atruistic. The pair of award-winning students are developing applications to benefit the disability community.

Mike Shoreman was a regular guy running a paddle-boarding business in Ontario until Ramsay Hunt syndrome struck him down and forced him to re-evaluate his life. Since then he has become a staunch advocate for the disability and mental health communities, showing how overcoming adversity is in all of us.

TRANSCRIPT

Evan:

so welcome back to DDA encouraging abilities podcast. I am your host. DDA communications manager Evan Kelly, today, we're not just talking about cognitive disabilities, but mental health as well adaptability, resilience and overcoming adversity. Joining me to talk about all that, is Mike shoreman.

Now here at DDA, I've been following mike on social media for some time. He is a mental health and disability advocate. Now, Mike is and was a typically developed, developed person and a coach, a paddle boarding coach with paddle Canada, until he was struck down with what's called Ramsay hunt syndrome back in 2018 now, the condition led to severe physical impairments, including loss of mobility, hearing and vision, chronic vertigo, facial nerve collapse, all of this culminating into a mental health crisis. Suffice to say, it was very life changing for Mike.

Perseverance is key. And by 2022, Mike became the first person with disabilities to paddle across all of Canada's five great lakes. So Mike, it's so great to have you here today.

Mike:

Great to Great to be here with Evan. Thanks for having me.

Evan:

No problem now, son, I don't want to give everything away, so I start this with a lot of my podcasts. So tell me a little bit more about Mike schorman.

Mike:

Oh, well, I am a keynote speaker, consultant and advocate. I work with organizations, academic institutions, government agencies, schools to help empower their people. And you know, help, help empower people and improve mental health, education and disability education. I work a lot with human connection. We learned a lot of things out there on the Great Lakes. It wasn't just me who went across them. It was a whole group, a whole team that I built to help support me, so we had to learn how to connect with each other to do these five marathons. But yeah, no, I'm I am just a regular guy who went out and did a big thing, and that was made possible by the support of a lot of incredible humans.

Evan:

Now, Ramsay hunt syndrome, that that's not something that comes up very much. I didn't even know it existed until I started to follow you. Had never heard of this condition. So what is it and how does it affect people?

Mike:

Right? So it's a neurological disorder, condition. It is activated. So what it is is essentially, if you've had chicken pox, chicken pox, once you've had it, it stays in your system, and it remains dormant. So many of us had chicken pox when we were kids. I did I had, I had a very mild case, me too, when I was Yep, and, and then it just stays in your system, and, and it can be awakened later in life as shingles. And, you know, both my grandparents had shingles. Shingles is usually you get shingles in your in your later stages of life.

 

Evan:

Well, ironically, ironically, I had shingles a number of years ago, probably about 20 years ago, when I was fairly young, and the doctor figured it was stress related, but it did happen to me.

Mike:

Right, connection, right? So the Herpes Zoster virus, which is chicken pox, it can be reactivated as shingles when brought on by stress and and so what Ramsey hunt syndrome is is it is shingles, but very specified to when it attacks your eye or your ear. So in my case, it attacked my ear. I ran myself into the ground and wasn't taking care of myself. As I was an entrepreneur and I was running my paddle boarding business, and and ultimately, I worked myself into the ground and wasn't looking after myself well enough. And then, and then, it affected many different things, because it affected my vestibular system as it affected my ear. So Ramsay hunt syndrome can be mild to severe. In my case, it was very severe. The mayor of Toronto, the current mayor of Toronto, Olivia Chow she she had Ramsey hunt syndrome, I think back in 2000 Then eight she and she had to publicly announce it, because, because facial facial paralysis is part of it. And as being in politics, she had to make an announcement that this is not a stroke. This is what this is. And then a couple years ago, Justin Bieber announced that he had it and he canceled his entire world tour.

Evan:

Wow, wow, and so. So for you, what were some of the long term effects?

Mike:

So, what is a chronic condition? So even now, you know six, what are we were five, seven years later, even now, there are days where where my energy is low, or the barometric pressure changes, and I can feel it, or I get tired, and you can tell when my walking or my or my talking or with my speech, But no, I essentially lost my mobility, and I had to work with a vestibular rehab therapist to reprogram my brain ways to walk in a straight line. They said that I would never get back on the water, that I would never paddle board again.

I had to go for, you know, audiology tests and vision tests and and MRIs to rule out brain damage. So, no, it was a, it was a very big adjustment to to a new normal.

Evan:

Yeah, and then, so, you know, you're, you're a paddle boarding business, you're obviously outdoorsy, active kind of guy. Again, back to what I said earlier. Was typically developed. How, how difficult was this, to accept that life just suddenly changed?

Mike:

No, you know, when you acquired, you know, so many Canadians, so many people acquire disabilities later in life. I am just one of them, but it seems like there were so many all at once, and it was incredibly overwhelming. And you know when you lose your when you go from standing on a paddle board teaching people for 1012, hours a day and working for 17 hours a day, to not being able to walk and not being able to drink out of a cup, you know now you have to use a straw suddenly. And you know, when you have a shower because of the vertigo, you have to sit down in the bathtub rather than standing up. You know, all of a sudden, I lost my business. I lost the ability to earn an income. I lost my social life, which is hugely important with connecting with others when we're struggling. I couldn't I couldn't go out. I couldn't see people. So my world went from being very big to very, very small and and ultimately, you know, loss of independence, loss of social life, loss of identity in the world that I had created. And so I just didn't recognize, like, like, like many people who go through through that later in life. I just didn't recognize who I was anymore.

Evan:

Well, when you say later in life, though, that you weren't, I mean, how old were you when this happened? Oh, well, 35 Yeah, it's not very late.

Mike:

No, no, no, yeah, no, I Yeah, no, I was still, I guess still.

Evan:

Yeah, that was same for me when I, when I mentioned that I have shingles, I was probably around even like 28 I was that right? That young when that happened. So I guess we're poster children now for the fact that that can happen, not just later in life. Yeah. So, yeah. So was there a turning point when you realize that mental health needed to be the focus for you?

Mike:

It's dealing with physical stuff is one thing, but there's that whole mental health side of it, absolutely so a big focus on my recovery was placed on physical rehabilitation, but not so much with the mental Health and I was, I ultimately, what it came down to was that I felt like I, you know, I was, I was being looked after. And after months and months and months of this, I felt like I was a burden on other people, and I didn't see, you know, when we, when we go through a. Shift in, in our physicality and in, in, in how we operate and how we, you know, do day to day life. You know, it's it's a, it's a, it's complex. And I wasn't coping I didn't have the coping strategies in place at the time, and so ultimately, I ended up going for a stay in a mental health treatment facility, and it was there that I was set up with counselors and therapists, and I don't advocate for it with everyone. But in my case, it did work. I did go on medication and and it did, it did work well for me and and on the other side of receiving treatment, and, you know, coming out of there with, you know, coping strategies and tools that I could implement. That was when I decided I didn't want other people to ever feel as alone or as hopeless as I felt, and

Evan:

so suffice to say, your adverse, your advocacy that you do right now in life is a direct result of what happened to you. Absolutely yes, yes. And so this, so this inspired you to become a mental health advocate. And so, awareness and support, I guess, is your main goal is that is, I guess is that kind of your full time job? Now? Is that what you do?

 

 

 

Mike:

Yeah, so full time I work, I work with corporate I work with businesses and corporations. I do a lot and and schools, government agencies, nonprofits. I do a lot of conferences and and I work most. Most of it is stress management and burnout production, because that's what happened with me. So you know a lot of organizations who, who have, you know it's competitive out there. So a lot of people who, who have employees in industries who are ambitious and highly competitive. They look at my story and they see, they see the these. They see the face of of what, what can happen, you know. And, and then, and yeah. So I get to work with a lot of incredible, incredible people, and that is, that is my full time, my full time job.

Evan:

Now, when you look back and then you look at your life, now, does it seem weird that you're doing this rather than your business, your other business, I mean, your paddle board business.

Mike:

Yeah, no, it's, it's funny because I get to, I still get to do it. I get to do depending on the time of year and where I am. I've done team building exercises, so I still get to do that. So you know, if a company will have has me in and they want to do a keynote, but then they want to go paddle boarding. We bring in paddle boards or, or we set that up so, so that's really nice. I've got, I've, I've been able to carry that on and still keep, you know, my my toes in that a little bit, which is, which is nice for me.

Evan:

Nice. So what specific changes or outcomes have you seen as a result of your advocacy?

Mike:

So no, I've had some wonderful opportunities in 2022 of course, we created that campaign for jack.org which is Canada's national youth mental health charity, to cross the Great Lakes. So we recreated in 1988 Vicki Keith swam across the Great Lakes to raise funding for children, raise funding and awareness for disability organization that supported children with disabilities and and in 2022 we recreated that, except using becoming the first person to do it on a paddle board. And, and so that that helped create, you know, I don't know the numbers they have set jack.org. Has said this helped create, you know, helped us, you know, create programs and services supplied to 1000s of young people across Canada, so that that always makes me feel good. Yeah, but no, I've been, I've I've had wonderful relationships with several mental health organizations across Canada. I've done some consulting work with the newly launched 988, which is Canada's national suicide prevention hotline, to help them make their help them. Make the national number more accessible for persons with disabilities, because persons with disabilities face mental health challenges five times higher than the national average, yeah, so, so I do a lot of consulting work and and a lot of Connect, you know, connecting with people. In May, I had the honor of keynoting the 34th Annual National Suicide Prevention Conference in Vancouver.

So I've, I connected with mental health organizations all across the country. And from that, I've, I've, you know, they've had me. And so I've worked with my first indigenous communities now, which is highly rewarding, because they, you know, face significant it's a mental health crisis within indigenous communities in Canada, so to go In and connect with people and and, you know, provide education, but but some motivation and hope. Because when people are struggling, that's, that's, that's what they need. They need a reminder to keep going, and that today is today. Might be a dark day, but there, you know, there was tomorrow, and tomorrow can be a little bit better than today.

Evan:

Do you think Canada is succeeding in these kinds of supports? How are we doing? From your perspective,

Mike:

I think we've made significant progress. It's funny today, this morning, Bell shipped me eight massive boxes for balance talk. I do a lot of events during awareness days and months and weeks and and all. And the delivery arrived. But if we look at things like Bell, Let's Talk Day, just as an example, I think we I think it's been around for maybe 2022, years ish now, but corporations weren't talking about mental health before and and many organizations weren't. So we have made significant progress. There's still so much work to do now, I just made a post this week about the prime minister's resignation, because our campaign was I went to Ottawa and met the Prime Minister and and and the post really focused on what has been done within mental health and, and, you know, 988 which is Canada's national suicide prevention hotline that was implemented just, You know, a year ago. So you know, now, if you know people who are in crisis, who are struggling, who really just need someone to talk to, they they have that, and that has come in, you know, just recently, so we have made significant progress. Mental health is is so underfunded across the board, as as our, as our, as our many organizations, but specifically mental health. So no, I think we are making progress. And the more that we have these conversations, the more it's normalized, the more the more the organizations that are here to support individuals, they can benefit from that. So somehow, I think we are, we are making some headway on the right track.

Evan:

So how did your perception of the disability community change when this happened,

Mike:

absolutely so no, I think you know, prior to this, I I had no, I had my my thoughts and my, my. Perceptions of the disability community and what that looked like, and, and, and, and that did not include me. That was, you know, I, you know, I looked at the disability community as as you know, people, people in wheelchairs. And I didn't recognize that, you know, I didn't give it much thought, and I didn't, at the time, realize that, yes, there are invisible disabilities, there are there are invisible, and then there are visible, and and, and then, you know, the different kinds, and how this, how this affects people and and you know, no, it's, it's been a huge learning experience. When I had my paddle boarding business, one of my favorite things that I did, I shut down the business on Friday nights, and I worked with an organization called Autism Ontario, which was a provincially run organization In Ontario for families and persons who have autism and, and, and I did a lot of research and, and I really want, I've always been community oriented, and one of my favorite things was partnering with them. So, so on Friday nights, families would have the opportunity to come out on the water with with me and my business and and after doing a lot of research before even approaching them, I came to the conclusion, with with all of my reading, that that people with autism respond really well to to water, so So by bridging this paddle boarding with them, it was, it was a way, but no, that experience was probably One of my first, my very first experience within the disability community was with the Canadian National Institute for the Blind. I did my high school Co Op with the CNIB back in the very late 90s, early 2000s and I worked with their with their marketing team, and that was kind of my first experience with the disability community. And this year, it kind of came full circle. I just did three, three events with the Canadian National Institute for the Blind in Toronto and Halifax and in Edmonton, speaking at their events as a person with a disability. So it was very interesting, you know, going go, you know, being a high school student, and then, and then, many years later, developing my own disabilities and going and speaking at their organization. It was very true, very interesting.

Evan:

So, that would have been no in terms of your the physical disability that you, that you experienced through this, this syndrome, what would like did you have much of an impression about, you know, how accessible is society? Did you feel or see any limitations and go like i This is so weird to me now, because this was so easy before, and now it's not?

Mike:

Absolutely…so vertigo. Will people who have mobility challenges, who don't use wheelchairs struggle all the time. I remember the first time that I really noticed it. You know, aside from going through the recovery and using a cane to walk and and holding on to someone while they were taking me to my appointments. The first, you know, the core memory, I did an interview with the CBC, and I had to go downtown Toronto. I live just on the outskirts. I had to go downtown. And I came out of that interview. I You, downtown, busy day, and all of a sudden it felt like I was in an earthquake, and I didn't know what to do, because that had never happened to me while I was on my own before, and I had to grab. Grab the walls to support myself, and I've noticed it at different different events. You know, you go over stimulation and sensories, my senses are heightened. So even though I have hearing loss, I also have amplified hearing in my other ear now. So you know, when I go to a concert, I have to wear earplugs in the one ear. Or, you know, the the flashing lights can become too much. So the importance of having sensory rooms or quiet rooms for for persons who, who need to maybe just check out for 1010, minutes, half an hour, just go rest and then kind of restabilize and and then go and integrate back into the activity that they were doing. Is, is, is really important, and I've really seen the need for that in in the past few years.

Evan:

Okay, so we're gonna do one last question about sort of this stuff, and then we're gonna get into more of your the other media that you're getting involved in. So did you ever see yourself as an advocate and doing speaking engagements like this? And how does this compare to your previous life? I sometimes I want, I want to sort of shape this question a little bit, because I, you know, I've heard from other people who've gone through these life changing events where they feel like their life is better because of it?

Mike:

Absolutely, absolutely, no, I agree with that. It's very fulfilling. It's very rewarding. I never saw myself as I gave you know, I went to college for marketing and public relations communications. Yeah. So,

so I were, I worked in a public relations agency in Toronto, and eventually left that. But the reason I went into intra entrepreneurship, you know, I bridged my love of communications and marketing with with people and fitness and and spending it with people and learning about them and their stories. And you know, you I wouldn't just go out and teach someone how to paddleboard. I go out and and have conversations with people, and that's what kept it fresh and kept it fun. Today, I get to travel across the country and work with different organizations and companies and the same thing, connect with with people. And usually after I come off stage or or whatever they they come up with me and and they share their story, and it allows them to to kind of give, gives them space to to acknowledge what, what they've been through. So that's that's incredibly rewarding, and and I get a lot of satisfaction from from being able to do that. Did I ever imagine doing it? No, I did a. I did a in my college course. I i had a class called presentations, and I wasn't that good back then. I've had to bring in a team of, you know, professionals who who specialize in this, to help build out frameworks and and help help me become better, so so that it actually lands properly. But now, if you were to tell my, you know, my presentations teacher from back then he'd probably hang Oh, my goodness, what he what's he doing?

Evan:

So now we, we touched on it a little bit in the beginning. Of course, one of the big things you've done since, since this syndrome affected your life, is you've paddle boarded across all five great lakes. Now that's That is no small feat. How did that all come together?

Mike:

Right? So I started volun. I was volunteering with jack.org and then doing different events to help them.

I built a platform and and profile, and I decided to leverage that and and bring attention to mental health. So I started working with jack.org and. And, and they were wonderful. And, and we built these, these events, and then all of a sudden, COVID hit, and, and so, you know, no events anymore. So we just so I thought about it, and I thought, well, we could still do an event. We just can't bring people together. We just can't bring people together like and I thought, well, I could try to cross. You know, many years ago, Marilyn bells swam across Lake Ontario and in in the 60s and and, and she inspired, she inspired so many swimmers to this day to go from New York State to Toronto and to do that swim. And I thought, well, we can try that on a paddle board. I think the I, you know, I'm back on the board now, and we could train and build this campaign. And so we did and, and ultimately what happened was we got halfway across, and it was called for, for weather and and we raised a lot of money, and we raised a lot of awareness, and but we didn't make it. And, and so I kind of had to go away and and lick my wounds and, and when I came, I had meetings behind the scenes with people and, and I said, you know, how, how far did we go? And they said, You did. You did 76 kilometers. And then I started looking at Vicky Keith's crossings from the Great Lakes, and I realized that her longest crossing was 74 kilometers, and that was the crossing of Lake Huron and and I thought, well, we we, we just went the wrong way. Most people go across, like Ontario, a much shorter route, and we did the long route, and it got camp like the weather, the weather kibosh did so. So we planned this, and then I kind of announced it. And I think everybody was just like, yeah, yeah, yeah, okay, okay, you didn't make it across one. So there you're going to do five. And, but no, we designed it so that we were going to do the shortest first, and that was Lake Erie. And we were just going to build them up over a series of months and, and we developed, ultimately, developed this kind of three and a half month campaign around crossing lakes Erie Huron, Superior, Lake Michigan, and finally, Lake Ontario into my hometown.

Roz Maclean is a wonderful artist who hails from the Comox Valley. She has turned her passion and vision into a successful line of children's books that teach inclusion and diversity. www.rozmaclean.com 

 

TRANSCRIPT

 

Evan:

welcome back to DDA encouraging abilities podcast. I'm your host. DDA communications manager Evan Kelly, today, we're talking with Roz McLean now Roz is a local award winning author of children's books that deal a lot with diversity, communications, emotions and inclusion, which, of course, is right up Didier's alley. Roz is also a visual artist and illustrator and an educator in the Comox Valley here in British Columbia. She likes to investigate ideas of human nature, diversity, relationships, community, mental health, interconnection and the natural world through an anti oppressive and LGBTQ and inclusive feminist lens. They've written a couple of books illustrated even more, in addition to having a portfolio of artwork that covers abstract ink drawings animals, one set of works called insufficient arts art, rather which focuses on British Columbians with disabilities. That and more can be found at Roz mclean.com and I'll say this a couple of times, it's Roz with NAC mclean.com

Roz. Thank you so much for joining me today.

Roz:

Yeah, thanks so much for having me now.

Evan:

I always begin my podcast with you know, people I've never met before. So tell me a little bit about a little bit about yourself?

Roz:

Well, yeah, I'm a children's book author, illustrator, and I'm on Vancouver Island in the Comox Valley on the traditional territories of the Comox people. I have a dog. I live here with my husband.

I like to go in the forest, yeah, I don't know. It's, it's, it's funny to try to sum yourself up.

Evan:

I mean, you, you obviously do a lot of art. Art is your is that you're like, the number one passion in your life.

Roz:

Ah, I think, I mean, it's definitely been a common thread throughout my life, and it's funny, I guess when your passion becomes like your job, because it is my passion, and now it's also my job. So it doesn't always feel so passionate, but it's been a really common, consistent, yeah, thing in my life that I've always turned to and enjoyed doing is that something you studied in the past,

I'm really lucky that I grew up in a really, like, arts and rich environment with my family. My parents are both artists, and my mom worked at like, arts umbrella when I was growing up, so do have classes there. And I grew up in North van as well, and they had, like, lots of enrichment stuff going on in their school district. And then I also went to Emily Carr and SFU for a little bit. I didn't finish up degrees there, but I was there for a little while. And then, yeah, and then I'll just take classes, like, here and there. It took, like, infection course one time. So I'm always learning, yeah, and because, it's because

Evan:

I look at your art on your your portfolio on Instagram and stuff like that. And it's, it's, it's, you run a lot of different styles, and it seems like quite a bit of different mediums. I just love your your ballpoint pen work. It's really, really detailed and very realistic. So you've got some obviously, influence from all over the place, and not just one particular, particular medium or style.

Roz:

Yeah, yeah. All over the place is a really great way to describe it. That's how I feel a lot of the time. I'm very much like, Oh, what about this? They're like, Ah, I could do that. And it's very like, kind of counterbalancy, like, I'll work on something really detailed for a while, then I'll be like, Oh man, I really need to, like, feel like I want to do something more loose and abstract. So yeah, all over the place is a great, great way.

Evan:

You mentioned your your work. It's your passion has become your work. So is this a full time thing for you?

Roz:

Whether books, yep, yep, I'm author, illustrating is what I'm up to these days, which is amazing. I don't know. Not many people can say that that's that's quite an accomplishment. Yeah, I feel really lucky, very grateful.

Evan:

So what inspires you?

Roz:

Definitely, like life experience. And I think, like, I have a lot of big feelings about like the world.

Evan:

I mean, the election just happened in the US. I don't know when this podcast will be coming out, but it happened, like, a couple days ago and like, so you know that it brings up all these big ceilings, and it

can be really hard to know what to do with all of that, and to feel very

Roz:

Yeah, to for me, I can get kind of like, stuck. And and so art isa place to kind of put that energy and all those feelings and kind of the dreams that I have, and I know many people have, for like, hey, things could be different and better. So I think I'm really inspired by by envisioning just better possibilities.

And I'm also really inspired just by like ideas of connection, like connection to nature, like I am, where I am right now. There's like, tons of forests and ocean and wildlife and everything, which feels really great, but yeah, nature is also always been something that I found really inspiring and awe inspiring,

yeah, and I've inspired also by other artists. Like, it's, it's just really cool to see what people do. And it's always, yeah, I'm, I'm often blown away by other artists too, and it's very invigorating.

Evan:

Yeah, we're, we actually run a very robust art program through DDA for for a lot of our adult clients, and I'm just, they just took part in possibilities. Now, possibilities is another organization here on the lower mainland, and they do an annual art show and sale every year inclusion. They call the inclusion art show and sale and, yeah, stuff our clients come up with, and other people with disabilities, and specifically for the disability community, the stuff they come up with just absolutely mind blowing. And it's, and it's, obviously, it's very affordable art, and it's, you know, I would always encourage people to come to DDA website. We've got a lot of our artists showcase there as well.

Roz:

So that's really cool. Yeah, absolutely. Now your books deal a lot with inclusion and diversity. Why is this so important to you?

Roz:

Um, I think the idea of inclusion and, yeah, diversity, they've been a really, like, core care throughout my life, and, like, my family's life. My older brother has an intellectual disability and and Yeah, and so we him, and I went to school in like, the 90s, and inclusion was like a very new idea. And so I really watched my brother and my family, like navigate that and do a lot of advocacy work, and yeah, to just see the bumps that would come up and the limits and the barriers that were in the way to inclusion and acceptance and to just kind of come up against all these, like old ideas. So that was just something I think that's like very core to, like, all of my memories.

And then I also ended up working in schools as a special education assistant and intervener. And intervener is someone who works with students, students and individuals who are deaf, blind and and yeah. And that was another area where I just got to see, like, all the possibilities that I encountered with the students I was working with,

yeah. Yeah. And then also, kind of, like, what structures are in the way in those school experiences that I came across. So I think that, like throughout all of that, and throughout just like what I've been like, you know, reading and learning and everything I just, I have this, like, very core belief that, like, every person has value and and diversity is very valuable. And these kind of, like norms of,of like abledness And like, just expecting people to be one way that's like, this super productive way, like, it's just, it's not good for anybody. But also, you know, I see how many people get left behind andand aren't cared for under that scenario. So, yeah, it's just like, it's in my heart. So I just, I feel it and I think about it.

Evan:

Well, that's great. So what is the inspiration? You know, we'll get right into your books here. Like, what is the the inspiration behind more than words, that's, that's, that's more of your newest, newest one, isn't it?

 

 

Roz:

Yeah, yeah, that's the most recently released book I have. And so the full title is more than words, so many ways to see what we mean. And the inspiration for that really came from working in school. I worked in vancouver public schools for 11 years. And yeah, like I said, So supporting students with disabilities and who are deaf, blind and so communication was, like a very recurring theme like that was especially students who are deafblind. Part of that role was figuring out communication systems that were like, especially for how those kids were interacting with the world, andyeah, and then so. And then the other part of that was like, communicating with the rest of the class and the rest of the school and the rest of the staff about, like, okay, like, this is how the students communicate.

And so there are the specifics of that that are unique to whoever is, you know, using alternative communication. But then there are also those, like, general conversations. It's like, yeah, like, we don't just talk by talking. We we communicate in all these different ways, and that's really normal, like we all do that. And it's also, you know, normal and common for there to be people who don't communicate through talking.

And then part of it too was Yeah, so I really wanted to normalize that, and then I really wanted to provide something for educators who are in those space, who might not feel super confident to like lead those conversations all on their own, like they might not feel like they had all the knowledge or tools, but they might still want to have those conversations. And of course, you know, like a teacher might not have a student who is non speaking in their class, but maybe there's students in the school, or just in their community, there's people, and so they want to have those conversations, and then so I think a book is just a really easy way to start having those conversations and start discussions now talk about the main character In this in the book more than words.

Evan:

Oh yeah. Is this person? Yeah, because I don't have the book in front of me. Is they? Are they deaf, blind or communication in some other way?

Roz:

Oh, no. So yeah, that's great question. His name is Nathan, so he's a young boy, and the premise with Nathan, it's a book starts and it says that Nathan doesn't say much, but he has a lot on his mind, and so we never really learn why Nathan doesn't say much. And I wanted to leave that open like it could be because Nathan has a communication disability, and it could be because Nathan's really anxious. It could be because maybe Nathan doesn't know English, so I wanted to leave that open. But the way that Nathan, he's really interested in, in building, or like digging puddles in the in the schoolyard, in like with the rain when it comes like to to make canals and everything and connect them. And so he kind of tries to reach out to friends to play with them, but they don't really like get it.

And then through his story, we are also introduced to all these other kids in the school who communicate in these different ways. So, you know, there's things like the iPad or sign language, or even just like wearing different kinds of clothes or or drawing or painting. So, yeah, and then, so eventually he he does make connections with other students, but it's in a bit of a non traditional way.

 

Evan:

And so how do you like? How take me through that process? How do you formulate this idea, from from start to finish, where you know, how do you develop the story and and then, of course, the accompanying artwork to go along with it.

Roz:

Yeah, yeah. So I've, I've found that every book is different. That I've been working on for more than words that was actually had many different shapes before it finally landed on the story that that's in the book right now. So what I really wanted to do is, have, you know, a main character, but also have it not just be the main character story. So I really wanted to find a way to, like, kind of traveled through all these different modes of communication, and so it actually was quite tricky to figure out how to tie those things together. It's not really a common way of telling stories in published like, and the kind of thing that comes up when you're like, submitting things to publishers is, like, they do have, like, you know, specific formats they're that they're more used to and comfortable with. So it took a couple of iterations and a couple of, like, sending it out, and then the publisher would be like, Oh, I like this. But like, Could this be different? And so there were, like, different characters and different it started out much more simple. It started out with it was more just kind of like, this is what communication is about. And then like, kind of just going through these different modes. And then eventually it became more and more like main character driven. Actually, once I did get connected with my publisher, they actually, we decided to make the book longer so there was more room. Yeah, because yeah. So this is getting in the weeds a little bit. But, like, often publishers 32 Yeah, I know often a book is 32 pages long, so when you like, submit, you kind of, like, plan on that. But they offer, yeah, yeah, yeah, for a kid's book, for a picture book, but they were able to make it 48 pages, so that gave us a lot more room to balance Nathan's story and the rest of the content of the book. So yeah, it was a lot of, yeah, yeah. By the by the last kind of draft, I, like, knew about Nathan, but I didn't like, exactly know his, like, journey in the story and how that was kind of luck.

Evan:

Now, given a lot of back and forth, would you at all, pardon me, be drawing on your experiences as a teacher's assistant in Vancouver and stuff like that.

Roz:

Oh, totally Yeah. Like Nathan's digging pedals in the field, and that's like, such a vivid memory of just remembering being out of recess with the kids, and they're all in there, in the pedals with their shovels and whatnot. So yeah, it's very flashing back to that work. No, I don't want to ask about how the story ends or anything like that. Don't want to give anything away. People can buy the book.

Evan:

Is a happy ending, so that's good. And you've got a lot of press on this. This was even featured on CBC kids, wasn't it?

 

 

Roz:

Yeah, yeah, yeah, yeah. That's really fun. Now, is that something you you help do, or is that something that, does the publisher sort of take that on and connect the dots?

Roz:

That's a great question. They are definitely they kind of take on that whole side. I don't know the exact mechanisms, but that was just something that I got, like, an email about one day, it's like, Oh, that's great. So stuff like that, it's always like a wonderful surprise, yeah, that always helps. Help, hopefully helps, yeah. Now, in terms of, like, sort of,

Evan:

Now, back to the to the sort of, the research and the communication for this particular book, did you have to do any sort of research on different types of communication for people who might be non verbal.

Roz:

Yeah, I did, yeah, because there was a communication system that I was like familiar with from working in schools, and then one area that I especially ended up researching was spelling to communicate. We have a family friend who, he lives in the US, but he spells to communicate, and, yeah, he's autistic and non speaking and, or minimally speaking, yeah, and, and he, he like writes about that and shares about his journey and how that kind of looks. And then so through the introduction of that, I went, and I like researched spelling to communicate a lot more. So that was, I think, the main area where I like it was more brand new to me. I was like, Oh, I hadn't really heard about this before, and I don't, I hadn't come across that in my work before, so I don't know how common that is here

Evan:

So moving on, a little bit of might be jumping around a little bit in terms of your your books library here, yeah, I am older, I am new. I am odd. I am new. Oh, I am odd. I am odd, I am new. Yeah. Now you didn't write this one. This was a book based on an autistic author, Benjamin Giroux. Was this something of a collaboration? Like, why this particular poem?

Roz:

Yeah. So we actually we're connected. We share an agent. So Benjamin had written this poem, and it like, really took off. And like, so a little background is that, for the listeners, is that Benjamin was 10 years old when he originally wrote the poem, and it was a school assignment, yeah. And so it kind of like took off, like on the internet and went viral, and he was like in the news and everything and so, and it was about his experience being autistic and how that felt for him. And it's a really beautiful rhyming poem, and quite touching and profound. And so they shared an agent, and they were looking to partner with an illustrator to like, pitch the book, yeah, so I ended up making up a couple pieces for that, and then we pitched it around. And then I got picked up.

Yeah, they did, yeah, they did give, like, input on the art before we moved forward and everything. So it was collaborative, like, a little bit like, it was more collaborative than like, if people, if authors and illustrators work together through a publisher, they usually don't really talk at all about the artwork. So it was more collaborative than that, but it was, it was matching his existing poem and creating art for it.

Evan:

Well, that sounds that sounds good.

Once again, for listeners that that book is called I Am odd. I am new by Benjamin. So if you're talking about 42 pages, that seems like an awful lot of artwork. How long does it take you to develop all the artwork for these books?

Roz:

A long time. Yeah, so I work, and it does depend on the book, but I work with traditional media, and I also will scan it in, and then do a bit of digital work as well, but it'll take me, I'd say, like, at least, like, six months to do everything to do, like the refs, and then they approve it, and then you make the artwork, and then you there's a bit of back and forth. So it always takes a substantial amount of time.

Evan:

Now, as an artist, do you sometimes submit some art for a book and they go, No, do it again. We don't like it.

Roz:

Oh, well, luckily, the system we have is I'll submit like sketches, and they'll respond to the sketches, and then so if things aren't working, then they let me know at that stage. And so by the time it's finished, there might be like, a little tweak, like, oh, this area needs to be better to read the text or whatever. But like, by the time I submit the final art, I'm not being told to redo anything.

Evan:

So, another book coming out, together a forest.

When's that slated for for publication? Or is it out already next spring? Next spring, next spring. 2025, yeah.

Roz:

So together, it is available for pre order now.

Evan:

Oh, is it okay? Good, good, good. So tell me a little bit about this book.

Roz:

Yeah. So this book is, it's about a class, and they go on a field trip to a forest, and there's one main character named Joy, and when they get to the forest, this class has an assignment from their teacher, and they have to pick one thing from the forest that they really like, resonate with, and they're supposed to draw that thing. And it's like a class art project. And so all the kids are choosing one part of the forest, so like mushrooms, or like ferns or like a squirrel. And as they choose,

we spend a bit of time with them, and we learn about kind of how they're relating to that element, and also how it it shows something about, you know, their personality or like, how they relate to the world.

And it also like highlights, either like an element of like neurodiversity or disability. And then joy, the main character, she has a really hard time knowing what to choose. So that's kind of part of the story.

And yeah, and then things happen. And then there's the story. But that's the main premise, nice. And that's kind of is tying in, sorry, it's kind of tying in like E College, ecological diversity and and human diversity. It's coming, covering some important bases.

Evan:

So yeah, now once again, before I even go further, these books are of course, are they just available on Amazon? How do people get a hold of them?

Roz:

Um, wherever books are sold. People can get them if a bookstore doesn't have them, which they don't always, they can be ordered. So indie bookstores can order them too. And like, yes, book, the books are available on Amazon, just wherever you buy books.

Evan:

And do you have links available on your website as well?

Roz:

I do, yeah, yeah, and on the Instagram as well, excellent, the most active on my Instagram, but

Evan:

We're following you now, by the way. And once again, that is Roz mclean.com And yet another book slated for publication in 2026 correct, a mystery, a wonder,

Roz:

Yeah, yeah, that's the one I'm working on right now, and what's literally painting away this morning. No, I'm in the middle, oh, process, yeah. It's okay. Sometimes they need break. It's what you probably saw was the like announcement for the publisher acquiring that title.

Evan:

Yeah, yeah, in the thick of it. Do you want to talk about that one? You just want to leave it under wraps for now.

Roz:

Oh yeah, I can talk about it a little bit. So the mystery wonder is, it's basically, it's more like a poem, I guess, and it explores all these different vignettes of darkness. So like, you know, nocturnal animals, or like the deep sea, or like caves or watching shooting stars, so it's, it's going through all these kind of different scenarios, and, yeah, and hopefully revealing some ways of kind of being with the dark and the unknown and uncertainties that are, that are maybe new for readers,

and so that maybe they're Not so scary after all, kind of a thing, yeah, yeah. And it's not super, not super overt with that message, but yeah, that's, I think, definitely one of the takeaways.

Evan:

That's good, and that's, that's your that's for 2026,

Roz:

Or a solid year from that, good, good, good, yeah, yeah. So it's really interesting. The publishing process just takes a long time.

Evan:

Yeah, well, sounds like it, sounds like it. And do they just, this is more of a technical publishing question, because I just have no idea about this stuff. When they, when they, when they, they, when the publisher has, okay, we've got your book. We're gonna print, like, So and so amount of copies, or do they just sort of do it by order?

Roz:

Oh, I think they print a number of copies, like how? And I don't know how they make that decision, but they, yeah, they print a bunch of copies, and then they try to sell those. And then I think they can do a reprint if they need to,

Evan:

Good, good, yeah, well, I'm hoping it's in the millions.

Roz:

Oh, yeah, that'd be great.

Evan:

Okay, so the one thing I mentioned in the at the intro, this is the insufficient art project. Tell me about that. What was that all about?

Roz:

Yeah, yeah. So that was in 2021 is when that got released. So the insufficient art project was a series of portraits and interviews I did. And it was through a grant that I got a digital original grant from the Canadian Arts Council Council. And it's a series of portraits and interviews of people, indeed in BC who either had experience or relying on the disability assistance benefit. And so, as you can probably guess by the title, it was about that not being enough for people to survive on. And so, yeah, it exists as a website, insufficient Art project.ca,

Evan:

It's also insufficient art project on Instagram, so you can see an e book and on the website, there are the interviews in the portraits as well. No, you've also done, I mean, your artwork runs the gamut, as we talked before, the, you know, detailed ink drawings to your piece with hands, all your hands forming the, all the letters of American Sign Language, which is really, really detailed. Two simple, colorful, butter, fun little butterflies and stuff, and the portraits of the now, the portraits of the BC coalition of poverty reductions members and staff. Was that part of the insufficient art project? Or was that something different? It was a different thing, but it was related in that they saw the insufficient art project, and then they wanted to commission portraits in that style.

Roz:

So, yeah, I think, I believe they had a grant as well. So they wanted to highlight their membership and the people doing activism through portrait part.

Evan:

And then what did they do with those portraits?

Roz:

They have them on maybe, I don't know. I think some of them have them on their website. But also it was so that the membership could use the portrait, and some of the membership shows to get, like, photography portraits. So it was so that they could use them in, like, an activism context. So it's like if they were sending out something for press or or interfacing, I guess, on like a public level, that they could have that to represent themselves.

 

Inspired by her son, a Langley mom creates a book to help people with cognitive delays navigate daily life. 

 

TRANSCRIPT

Evan:

Welcome back to DDA. Is encouraging abilities podcast. I am your host. DDA, communications, manager, manager, Evan Kelly joining me in the studio, which is, of course, is always a nice change over the phone. Is Stevie artemenko, am I getting your name?

Stevie:

Very, very close. Yeah. Artemenko, artemeco, close.

Evan:

Stevie is a local mom who has three children, each with some various health issues. She also works as a special education assistant. Is a writer and an advocate for the disability community. On the writer's side, she has produced a book to help with cognitive issues. Plan, sorry, to help people with cognitive issues plan and organize their days and develop life skills as they get older. It's called Life Skills, checks, checklists and guidance to help navigate everyday life. It is available on Amazon. So Stevie, thanks for joining me today.

Stevie:

Thank you so much for having me. I'm really happy to be here for sure. So I always start these off with my guests telling a little bit more about themselves your local so let's start there. Well before becoming a mom, I did a lot of traveling. I love travel, and then I worked in radio as a copywriter and doing voiceovers. And one of the radio stations that I worked at, I was a creative director, and I got shut down. Everyone got laid off. And so, yeah, yeah. And so I thought, What do I want to do? What's something I really want to do? And one of my bucket list things was to go work for a nonprofit overseas. So I ended up working for an organization called Crossroads, and I ended up in Fiji as a teacher, and I had no background in teaching. Didn't know what I was doing. It was like, here's your class, they don't speak your language, and that was how it started. But thankfully, I had a wonderful roommate teacher who helped me.

Evan:

So what were you teaching? Then, everything, everything, Science, Math, English as a second language?

Stevie:

Well, basically, I mean, when it came down to me, what I was teaching, I was just teaching basically English and some math. It was a grade three class, but it was quite funny, because clearly there was a language barrier, and the kids would just be like, Yes, miss, Yes, miss, and half the time, I don't think they understood anything I was saying.

Evan:

So what do they teach in Fiji? Or not teach? What are they? What's the language in Fiji? It's Fijian. Fijian. It's its own language. Yeah, Pardon my ignorance.

 

 

Stevie:

No, no, that's okay. Um, so, yeah, so, and I only picked up a little bit of the language and but it was amazing. So that totally inspired me to come back and want to work with kids. And, you know, radio is really fun and great and all that. But it wasn't, you know, kind of inspiring me. And so I decided to go back to school to become a special education assistant, and that's where it kind of all started. And then, yeah, after my youngest son was born with all his special needs, then I quit all my jobs to focus on him.

Evan:

Yeah, right, right. So tell me a little bit about your youngest son then.

Stevie:

So I have three kids, and they all have health challenges. So my oldest is 24 and he's about to become a dad himself, which is really strange and surreal. Very happy for the first time. Grandma for you. Yes, yes. I was still like grandma. I like Nana better, but he had various health issues. He when he was a teenager, he was diagnosed with a congenital heart condition and a blood clotting disorder, so major surgeries, and it was really hard on him as a teenager and the family, and then my daughter, who's 23 was diagnosed with celiac a few years ago, so she's trying to navigate that, but she's on the road to becoming a registered holistic nutritionist, which is exciting, yeah. And then my son, Caden, who was the inspiration for this book, he was born at 25 weeks, at one and a half pounds. That's small, yeah. So he was considered an extreme preemie. He had major infections and very, very, very sick baby. So he was in the hospital in the NICU for about six months at Children's and Lions Gate.

Evan:

Can I ask you a little bit about that? Because, because that sort of aligns with my own life. I have an identical twin brother, okay? And we were born two months premature back in 1971 right? And so we were three pounds when we were born and given a 50, 5050, chance survival, yep. And it's, it's interesting, because my mom was a child psychologist at the time. And my father was a, well, he was a GP, but he was also, I don't know if he was a psychiatrist at that time, but he ended up finishing as a psychiatrist. And back in 1970 they Firstly, they didn't know my mom was carrying twins because her heart beats me insane. They didn't have ultrasound and stuff. Were that old. Old. But the interesting thing is that my parents brought a bunch of literate literature for it, because infants at that stage in the time you they're put into an incubator, and you weren't, you weren't able to touch them, yeah, and so my parents brought forward all this literature, but that if you are allowed to handle them even in the incubator, yeah, pardon me that they have a better drive. And I was just wondering, was that your experience

Stevie:

So so Caden was he was so he was 25 weeks. So at that point, his skin was so fine, it was like, almost like onion paper. So I wasn't allowed to even, you know, I wanted to stroke him and reach in through the incubator, but I wasn't allowed to do that because his skin was so fragile. So I could just tap him. And then it was three weeks. I had to wait three weeks before I was able to hold him. And they, I can't even remember the term that they used nesting, but yeah, so the first time I held him was three weeks after he was born, and amazing experience. But yeah, that was a part of the ritual to hold them. Because, yeah, they did thrive. They needed that, the warmth and the sound of their mother's heartbeat and touch, yeah. So, so important. So and it, it meant so much to me, and I think it clearly that's, that's part of the protocol now, yeah.

Evan:

And they Yeah. And then that was at Lions Gate hospital, and my understanding is the story went is that the they actually helped the hospital change their policy on that.

Stevie:

Well, that's how it was at children. So that's amazing that they were, they were instigators of that, because that's huge kangaroo. That's what they can kangaroo. Yeah, no, it was so glad that they did that, because to be apart from your child is excruciating, you know, especially when they're in the incubator and stuff. So to have that daily time with them was so important.

Evan:

so tell me a little bit about more, a little bit more about Caden's physical issues.

Stevie:

yeah, so he, so he was diagnosed super, super sick in the hospital. He ended up with a feeding tube, couldn't feed on his own that was removed after about a year, but then was later diagnosed with an intellectual disability, autism, mild cerebral palsy, hearing loss and a severe nut allergy. But wow, has he come a long way, and sorry, he said, Oh, he's 17 now, so he's almost an adult himself. Yeah, I think he's more ready than I am.

Evan:

That's always the case, right? I've got a 16 year old, yeah, just turned 16 yesterday, and I've got an 18 year old as well, who's now starting college for the first time. I need more time, yeah, totally. So then I stopped feeding him, so that's good. No more food for you. No no more growing so, you know, I guess we're both parents, so having all three kids with various health issues, that must have been a bit tough.

Stevie:

It was tough. I mean, there was a lot of times, you know, I was totally scared, lost, you know, felt like I didn't know what I was doing. But thankfully, you know, I did have a lot of support, you know, from the hospitals and their transition programs. And I really, I really, really learned to reach out and ask for help and know that, you know, I can't do this on my own. And you know, the days that I was, you know, crying or pulling my hair out or whatever, you know, those are the times when you you reach out, whether it's professionals or friends or family like that, to me is, you know, it helps you to be a better parent, and it's also self care. So if I, if I didn't do that, I don't know, I ended up about 10 years ago, I guess, well, more than 10 years ago, maybe 12 years ago, I ended up quite sick. I thought it was the flu, and it turned out I had severe pneumonia, and I was admitted to the hospital right away. I was intubated. I was in a coma for a couple of weeks. Oh, wow. And that was a big, big lesson for me, that I was doing too much, you know, trying to be there all the time for each of my kids and the family and just go, go, go. And after that, I really learned to focus on making sure I was okay, so that I could take care of my kids.

Evan:

Yeah, it starts there first, right? I mean, that's, that's something we talk about a lot here, and sort of try to champion that self care, even, even for our employees who are looking after people with disabilities, you know, for eight hours, absolutely that can, that can wear you down, wear you down. And that's how, you know, I I'm so fortunate. I feel, I feel blessed sometimes that, you know my kids, there's other than. Being them, being ornery and combative, it's I don't have to worry about a whole lot, you know, I'm very fortunate that way.

Stevie:

Yeah, I think it's so important. And I think the dynamic is changing that way, where, you know, people are realizing that, yeah, if I don't take care of me, I can't, you know, be the best for my kids or my family. So absolutely.

Evan:

And one of, you know, one of the, one of the problems that in the caregiving field is in DDA, and any other Association like that, like us, is actually finding people to do the job. And we see this dwindling, you know? And so again, we talked about AI for a little bit, and the we're actually developing a an autonomous sort of robot that can, it's actually still today, roaming around one of our more intensive care places, and it can interact with clients and oh my gosh, you know, notice doors open and things like that. So that's, that's something that we're developing, because my boss, Evan, recognizes that we're going to have a shortfall of support, you know, and, and we're always trying to sort of recruit men as well, because this is typically, these jobs typically fall to women, and we gotta get men to understand that it's important we have men that we're looking after who need that connection for. Oh, totally. And it's something I bring up from time and time again, and how important that is, anyway, tell me about your book.

Stevie:

Well, so as many parents, children you know, who have challenges with executive function skills or organization or memory, visual schedules are typically used at quite a young age. And that was something that was, you know, suggested to me by community professionals as well. But even before my youngest I was kind of writing out steps for my younger kids, just routine steps so that I wasn't always the one that was going, oh, did you brush your teeth? Did you get this? Did you get that? So I would be making these lists. And, you know, my kids, my younger kids, you know, when they were younger with, you know, laugh, Oh, Mom, you and your lists and stuff, but, but it really helped them establish a sense of confidence and independence. Made them feel empowered so that I wasn't kind of always over over their shoulder, you know, telling them what to do. And so now, as my youngest son is transitioning to adulthood, you know, I thought, okay, it would be great for him to have a book of all inclusive routines and steps and kind of essentials. And so I thought, well, you know, I'll see if I can find something online. And everything I found online was either too complicated or too wordy. And I knew that my son would not respond to that. I know he would be, you know, I'll forget it. I can't read all that. No, no, no, no. So I created this guide to be very simple as something that people could just refer to. You know, I have a quick read on a certain page or a certain routine, and simple, simple, simple, and then they can, you know, check off each step as they do it, or just refer to it. And that was kind of how it started. And yeah, so I thought, Okay, I'm going to create my own and then, and then friends and family and professionals, other professionals that I knew, said, You know, you should try to put this together and get it published. So and So you did, and so I did.

Evan:

Now you'd mentioned trying to find resources online. Did you find that fairly scant?

Stevie:

Nothing, not much. There's, there's a lot online for life skills, for sure, all different demographics. But again, they were just so wordy. And I was very intentional in that I wanted this book to be, I actually call it more of a guide, just that you could visually look at it and go, Oh, okay, I can do that, instead of just reading a bunch of stuff to go along with it, sort of, yeah. So that was kind of my focus.

Evan:

I'm just sort of flipping through it here. Of course, people in podcast land can't see it. There's a there's a few uh images, uh huh. Do you think you want, might want to use, like, is bigger images, or something like that? Didn't want to make it more visual, or anything like that was that, no, I mean, I use the visuals just just as an enhancement. Clearly, this is for someone that's able to read, right?

Stevie:

But, yeah, those were just kind of an enhancement, just to kind of dress it up a bit. I mean, when they're younger, when kids are younger, you know you're using the pick symbols and all that, but I intended it for people that can read.

Evan:

How long did it take to put all this together?

Stevie:

Well, considering it so simple, it took about six months working with the publisher just to get the formatting right, pick up the images, get the wording right and just fine tune the content.

Evan:

And so you went to an actual publisher, Amazon, plus, or is like, how does, how does that?

Stevie:

So they're not, they're not affiliated with Amazon, but they, they work with Amazon, so yeah. And so I worked with them, and they helped me do all the formatting, because that's not one of my strengths, is formatting. So in design, I knew I knew what I wanted, and so they helped me put it together.

Evan:

Yeah. Now your education is in supporting Special Needs is the content of blend of work experience, education and just being a mom of three who needed this kind of

support.

Stevie:

Oh, it's definitely a combination of everything I've learned over the years from, you know, working in the schools, and also just the advice and support I got from various organizations over the years, and then just what I've learned, you know, works with my own kids. There it has, you know, all these lists for managing daily needs and chores and eating right and, you know, being happy.

Evan:

Were there more things you wanted to include? Or how did you dial down this list of stuff?

Stevie:

Yeah, I was very, very intentional in that I wanted it to be basic. I mean, there was so much more I could have added, you know, you know, if I wanted to get into cooking or, you know, how to get dressed or but I was very intentional, and then I wanted it to have what, what I felt were the basic, kind of core essentials for kind of a happy, organized, somewhat organized life, right? Who's, I mean, we're not all super organized, but this is a tool for everybody. Yeah, well, it's funny, yeah, because I've had, I've had, you know, friends and stuff say, you know, I'm getting this for my husband, or I want to use this. Or they usually say, husband, though, which, sorry, guys, no,

Evan:

Well, I could probably use it. And so, so you did have to narrow down the essentials,

Stevie:

Yeah, what I, what I felt were essential. And I, you know, I talked to, you know, Caden about this a little bit too, and to my own kids, and just safety, you know, eating healthy, exercise, you know, and then managing daily life, as far as, like, paying bills and getting groceries and things like that, just, it's very I consider it kind of the essentials. Yeah,

Evan:

Yeah, absolutely. Now, when you're trying to balance teaching practical, practical skills, rather with fostering emotional and social growth,

Stevie:

Yeah, because I think, I think when a person feels more confident in their abilities and what they can do, like taking care of themselves, if it fosters better mental health, you feel, wow, I can do this. You know, I can do this right and and that's why I also included things like being a good friend, or, you know, how to be polite, just as reminders of what that what that looks like.

Evan:

Yeah, absolutely. Now, one of the pages you, I think, and rightfully so, because it's 2024 you mentioned online safety, and it's huge right now, have you run into any issues around that? Because I know I have. I've had, oh, I've had not, not in my immediate family, but my my step brothers, son, yeah, was gaming with somebody in the US, and then all of a sudden, started getting all this Nazi paraphernalia sent to him. It's like, whoa, that's crazy.

Stevie:

Yeah, I know it's Yeah. Unfortunately, we did have an incident with Caden, and we'd had many conversations around online safety. You know, never get out your password and be careful who you're talking to. But this was just recently, because he likes gaming, and this person online with him was saying, you know, Oh, give me your password and we can trade some skins or something, and, and Caden just got oh so excited, and he just didn't even think, and he just gave it out. And right away, the person got back and said, gotcha. And had complete access to all of his profile and everything, and, and likely your credit card attached to it. Thankfully, that wasn't thankfully, but it was. It was devastating to Caden, because it was years of his things that he had bought on that account, like a lot, and he was devastated. And I am not a techie person, not at all. I tried to resolve it with the company. But my oldest son, thankfully, is an IT guy, and he managed to get, you know, the account shut down and then restarted. And it was all good, but huge lesson for Caden, and a big reminder again of never give out passwords. Be careful who you're talking to. When in doubt, shut them down and you. Know, even my dad and myself and stuff, we get tons of phone calls of scammers and all that.

Evan:

So it's like, it's rampant, like I mentioned, my, my, my previous life working at the Better Business Bureau here in Vancouver. It's just the the level of scams and the level they go to to try and get you is unbelievable.

Stevie:

Yeah. And if you're a person that might be a bit more vulnerable. That's even, even more yeah. So, I mean, it was, it was a really good lesson, and so then that was a good time to go over the steps and the reminders in the book about online safety. Yeah. No, it's more than just opening a book, of course.

Evan:

Now, how do you recommend teaching or reinforcing these life skills in everyday settings.

Stevie:

Well, I think it really depends on the individual and what your goals are, but you know, you could, you could go through the entire book initially and just talk about it and then choose one or two routines to start with. Or you don't even have to go through the book and just pick one or two routines to start with. And so what I did with Caden is I went through the whole book, and then right now we're working on morning and nighttime routines. And so in the past, I would be like, Did you brush your teeth? Did you, you know, wash your face? Did you do your puffer Did you now I just Okay, check your morning routine, check your nighttime routine, and he goes right to it, and he checks it, and then I and then I, we're still in the process, but I'll kind of check after but, you know, once I know, I think he's learned that, then we're ready to move on to another routine that I think is applicable to where he's at, like, you know, right now, He's not ready for paying bills. He's not there yet. But, you know, the online safety was a good one to go over, or the morning routine, the nighttime routine, weekly routine might be, you know, doing your laundry. Did you do your laundry this week? And it's on that list, so I think

for reminding me, yeah, need to do my laundry. Yeah, I know right, that that's a very common one with with husbands and men and and the thing is, you know that you can just refer to the routines, but some people like to actually photocopy them or laminate them, and then they actually physically check off it as they do it, because some people really like that sense of check. I did this for Caden. He just likes to look at the page and, okay, yep, yep, yep, yeah, no.

Evan:

Is it? Is it a goal to sort of like Caden, for example, like wean, him off the book in a sense,

Stevie:

I mean, in a perfect world, yes, but I, I think that could take a long time for him. And so the idea is, is that, you know, he can just refer to it when he needs to, but it would be nice. But, I mean, I'm not necessarily expecting that, and that's why I just wanted this book to be like a tool in the tool kit.

Evan:

Do you find that it takes the pressure off you as a parent?

Evan:

Yes, yes, yeah, for sure. That was one of the other reasons why I created it, because I felt like I was, I was kind of constantly nagging him, you know, did you do that? Did you do this? And so now it's now I can just sort of refer to the book. Did you check that? Maybe you should look at that page. And clearly, we're still having ongoing conversations about everything, about safety and being a good friend and eating healthy. We're having those conversations, but this is just a supplement exactly.

Evan:

I mean, my kids are typically developed, I still have those conversations, yeah, yeah, yeah, there's only so much you can do,

Stevie:

Yeah. So this is just like a reinforcer to that, and I know for kids with autism, and my son too, he, he looks at things almost like rules sometimes. And so in that aspect, you know, it'll be like, Oh, it's in the book, you know. So that's kind of like a rule.

Evan:

And so that's helpful, yeah? I sort of brought that question up as it removes you a little bit and gives you some more time and some and your own in your own piece, and perhaps some self care, because it reminds me as like, as I mentioned earlier, my mom was a child psychologist, right? And when my kids were very young, I, you know, I asked her, How do I toilet train? I've never done this, right? Because I was the one who toilet trained my boys, yeah. And she said, All you need is a timer set up for 20 minute intervals, yeah, so that you're not thinking about it all the time. The timer goes off and you go, Hey, let's go to the bathroom. Let's try. Yeah, I had them both trained in an hour.

 

Stevie:

Yeah, wow. My mind, Oh, wow. That's amazing, amazing,dad, but it was.

Evan:

Is, but the whole concept is that it removed my thought process and left it with the timer, whereas this, you know, this book removes the thought process all the time and leaves it with the book. So that, to me, is worth all the tea in China.

Stevie:

So, yeah, and I really, I really wanted whoever's using the book for them to feel empowered, right? For them to feel wow, look, I'm doing this. You know? I can do this. And whether they're looking at the routines, or they've learned it by looking at it so much, then that's kind of the goal.

Evan:

So, yeah, that'sgreat. So can you share an example of a success story from someone who's implemented these strategies from your book?

Stevie:

Well, I've thankfully got really great reviews on Amazon. They're all five star reviews, and here's just one. It's it says it's very well written and easy to use. My son has a mild intellectual disability and has challenges around organization and memory. For him to have visual and easy to read, reminders around everyday life, skills and more, works very well for him. One of the best investments, for sure.

Evan:

Nice and in terms of investment, it's, it's like, what, 10-20 bucks.

Stevie:

It's $19 for the hard copy, and this is, well, this is the, yeah, this is the the book version, oh, the book version. And then the Kindle version is 550 and the Kindle version is actually, I've got it on my phone, and it turned out great, actually, and you slide through it.

Evan:

And so it can really be used on the go, but you've got many places where people can write things. Yeah, I guess you can't write on a Kindle.

Stevie:

No, no.

Evan:

But in your view, what are some common misconceptions about the abilities of people with developmental disabilities.

 

Stevie:

Well, this is something, especially when I had kids, I always, you know, tell them, we all, I think we all have special needs and we all have developmental strengths or challenges. You know, every person is so unique in that way, and so just my feeling is, I think saying developmental disability can be sometimes negative or misleading. You know, for example, someone might, you know, have memory or organizational challenges, but they might be great at math or art or cooking or and so I always think of that, that we all have our own unique developmental stories, right? So that's, that's my thoughts on that

Evan:

And it's interesting too, because, I mean, so many, not just cognitive, but, you know, physical disabilities, so many Canadians now, like 22 or 25% of the population actually identify with a disability. That's a lot of people, especially as we're getting older and living longer and we're going to have more needs. So society in itself, just needs to expand thoughts on this.

Stevie:

And you know, I had a conversation with my oldest son once, he said, he said, It seems like now everyone is getting labeled. Yeah. ADHD, you know, autism, whatever it is. And he said, I don't understand that. And I said, Well, you know, in some ways, you know, being labeled, you don't want that to become the person, right? That's not who they are. But I said, I remember when I was a kid in the classroom, and there might be, you know, someone who had a different way of learning or, but they were, they were, you know, called stupid or slow, or he's weird or, and I said, you know, that's that's not okay. And so at least now we're recognizing that, that people have different challenges. And when I put it to him like that, he was like, oh, okay, that makes sense, yeah, yeah.

Evan:

So, for sure. So the book is fairly new, yeah, I think you published it this year, correct?

Stevie:

Yeah, just in the spring, just in April.

Evan:

Wow. Not too long. So have you, Have you, have you been managed to move some of it into the community, into an audience?

Stevie:

Yeah, so there's, there's so many organizations out there that I think this would be helpful for like, community organizations, educational, health, I've been reaching out to BC children's, because I have contacts there. But it's a slow process. It's trying to get contacts at different organizations that I don't know, so I'm reaching out to all the ones that I do know first, and I have us, and now I have you guys, yes, yeah, and then just sort of spreading the word that way. But it is a slow process because it's just me, but so far, the feedback has been nothing but positive. So I'm really, really grateful for that.

 

Evan:

That's excellent. So overall, what's your big goal for the book?

Stevie:

I'm just really, just hoping that it will help individuals feel more confident and empowered in their you know, daily living and how to live a happy life. And then again, just easing. Of that pressure off the parents or caregivers to help them achieve.

Noam Platt is the founder of MakeGood, an organization in Louisiana specializing in designing and building devices for people with disabilities. We caught up with him about how new technologies are making it easier and cheaper to build an accessible world.

He moved to Canada about 20 years ago from the UK and never left. We chat with accessibility consultant Ramesh Lad who aims to make Vancouver Island accessible to all.

 

TRANSCRIPT

 

00:08 Welcome again to DDA's Encouraging Abilities podcast, where we chat about everything disability related. I'm your host, DDA Communications Manager, Evan Kelly. Now we talk a lot about accessibility on this podcast, how things can be done better to level the playing field for people with disabilities, whether physical or cognitive. Now that could mean adopting a universal design concept so that everything we build or create is done with everyone in mind.

00:33 Sometimes that's easier said than done. So we need consultants who navigate design beyond meeting building codes, because building codes doesn't necessarily mean it's accessible. It just means it might be relatively safe. So joining me today is accessibility consultant, Ramesh Lad, who hails from Vancouver Island. I came across Ramesh on an ex or Twitter story, if you're still there. So the power of social media is good.

00:57 And I was a person with lived experience. Ramesh started step-by-step accessibility consulting in 2018 and has been building his business ever since. So thanks for joining me today, Ramesh. Thanks for giving me the chance to chat. Thank you. No problem. I always like to start things like this. So tell me a little bit about yourself. So where do I start? So I'm basically originally from England. I moved to Canada in 2001.

01:26 And I came with the idea of just to live and work out here for about a year, just to get some different experience and to have a different sort of lifestyle. But 22, 23 years later, I'm still here and enjoying Canada, basically. My background is I in England, I worked with youth in schools. Before that, I worked in human resources.

01:54 And then when I came to Canada, my first job I had was with BC Paraplegics Association as one of their counsellors. And then from there, I've done various other jobs. Most recent jobs I've had is working with youth at risk here in the Covox Valley. I've also worked on the downtown east side in Vancouver when we lived in Vancouver. So my career history is quite varied.

02:21 My personal background is I was affected by the drug thalidomide, which is a drug given to expectant women to alleviate things like morning sickness. But unfortunately, the drug had an impact on the fetus, which left people with various types of disabilities, including limbs missing or short limbs.

02:51 And not everyone, sadly, had survived. So in the UK at the moment, there's about 400 people that were affected by thalidomide that are still alive. In Canada, I think it's just under 100 now that are still living and, yeah, living. Now, if you don't mind me asking, Ramesh, how old are you? I'm 62. Okay. You look younger in your photographs.

03:20 Thank you. That's good. It's amazing what Photoshop can do. And so, I mean, you know, just checking your profiles and things in your business website, what really got you interested in working with at-risk youth? I think it's just one of those areas I fell into. Like I said, my background was working with youth in England, but mainly in schools and colleges.

03:51 So when we moved to the Valley, a position came up, when we moved to the Colmocks Valley, a position came up which was involving working with youth at risk. And I'd already worked with adults at risk, as I was saying earlier, on the downtown Eastside. So this is just sort of following on from that, but specifically working with youth at risk, which is an area that had an interest in, especially as I've worked with youth in the past.

04:18 So that was it really, it was just more of a chance that came up here in the Cobox Valley where there was a program run called Blade Runners which is working with youth at risk to try and give them basic skills to allow them to find entry level jobs. So I was working with youth to sort of train them up to get into entry level jobs and then not just train them but also...

04:45 working with local employers and local companies to try and get them placed as well. So, but my interest came from my background. Oh, interesting. Now, so Vancouver Island is, you know, of course, a little bit detached from the rest of BC. Do you, how's business? How do you, do you feel like you're making an impact on businesses and design over there? I think I am. It feels like it at the moment. I'm quite busy with mainly educational establishments.

05:14 that I'm working with and I've done some work for a couple of senior homes and I've just started working with somebody who wants to improve their home for aging in place. So I think it's taking off. Businesses are a little harder to work with because I think there's the financial barrier that they feel might come up with what they need to do to make their businesses accessible.

05:41 I think the other thing is here in the Covox Valley, I don't know if you've been here in recent years, but in Courtney, a lot of the businesses downtown, the buildings are a little older, so they're a bit more difficult to make fully accessible. But I think businesses do try really hard to accommodate everyone. Trevor Burrus Now talk about, tell me a little bit about the cost.

06:10 making things accessible is that the cost really is somewhat negligible. And if you're thinking about a business where if you're a retailer, for example, or a restaurant, whatever, that if you're not making something accessible, you're turning away a big dollar. Absolutely. No, that's totally true. You are. Yeah, it's basically you're throwing money out the door because...

06:38 people aren't able to get in. And I think what we have to remember here is that people always think of disability or people with disabilities as being this very small percentage of the population. So they're looking at the big picture of, well, all these customers are coming in. I might only get one person in a wheelchair or one person with a learning disability or a hearing impairment. But in reality, what they're forgetting is that we've got an aging population here.

07:06 You know, worldwide we've got an aging population. Now that aging population comes along with various challenges of their own. You know, for example, mobility might be an issue, or hearing might be an issue, or sight might be an issue. So if you're making those accommodations, that population of people that might not ordinarily use your services are more likely to use them. You know, whether it's retail, whether it's entertainment, whether it's...

07:35 leisure and so on. So I think the cost, and again coming to the cost of it, it depends what needs to be done. If it's a new building, then the cost is, as you were saying earlier on, absolutely minimal because you can put those, you can implement those design features that will allow greater accessibility into place as the building is being constructed, which saves a lot of money.

08:05 And those things that they're putting in aren't huge. Why the doors? As an example, or recently I worked for an organization that works for affordable housing, and they were building units, and to make the units accessible, one of the things we looked at was putting support beams in the bedrooms. So in the future, if one of their residents needs a hoist or something, that could...

08:34 The hoist could be attached to that support beam and it is safe and everything else. But if you try and do something like that after the building is built, you're talking about quite a few thousand dollars to make that happen. Whereas when the building was being built, it was minimal, a few hundred, and that's just for the material. The labor costs don't even come into it because they're building this unit anyway. So it all depends on what level of...

09:03 you're talking about. New buildings, I would say you're actually right, minimal. Older buildings, it might be a bit more, but again, I would say the costs are huge. I think there's a lot of assumptions about what needs to be done. So having somebody like myself or one of the other professionals from the Rick Hansen Foundation look at things would give them a clear idea of the cost maybe not being as high as they're thinking it's going to be.

09:34 So with that in mind when you enter a building or someone I guess someone's house or something like that when it when it turns When it comes to making a sort of a report, what are the main things you're kind of looking for? Well, I start right from outside So whether it's a building or a house, you know, you're looking at it from the exterior pathway to the front door or to the entrance of a building and then

10:03 You know, you're basically walking the building, walking through the building in your mind and looking at every aspect of it. So for example, on a driveway or a pathway, you wanna make sure that it's level, it's easy to identify the path, it's safe. The lighting is good for nighttime. When you get to the front door, is it a level entry, are there steps? How easy is it to reach an intercom if you're...

10:33 going into an apartment building. So it's every little detail that you can think of that you're looking at. You're not just looking at, okay, what if I'm inside, can I get from the living room to the bedroom, or can I get from one office to another? It's not that, it's you're looking at every aspect of that building, and not just the interior, but the exterior as well. And so you mentioned you've got aging clients, so you're dealing with private individuals as well?

11:01 Yeah, yeah. I've just started basically that that's that's come about through the article that you saw that you contacted me through. So yes, I'm hoping that that's something that I can work more on that would allow people to stay in their homes and to maintain a level of independence that they want. Well, yeah, and like you mentioned, you know, Aging Society, I mean, latest stats from 2022 say about

11:30 27% of Canadians identify with some sort of a disability. So Seems like there's a gold mine there for this kind of thing Yeah, exactly. And it's not just a gold mine. I mean, you know, yeah, absolutely There is a financial benefit for people like myself who are doing this work But at the end of the day, you know from a community and a society point of view There's so many pluses as well, you know as an example this person I'm working with at the moment

11:58 She's going to be able to stay in the community where she's lived for the last 20 years or so. She's going to be still around people that she knows. She's close to friends and family. So there's a huge benefit there. And then if she decides to move, that home will be ready for somebody else to move in and to continue with aging in place with maybe some minor alterations to meet their individual needs.

12:24 So I think the benefits outweigh any cost. Yeah, absolutely. And even in my own experience, I don't have a lived experience with a disability myself. My mom did get sick a few years ago and passed away shortly after that, but that's a whole other story. But once we realized that when she got sick and was ill, she was going to have some renovation work done in her house.

12:51 But we just turned to the renovator and said, like, hey, we got to cancel this stuff. Because it was, in fact, terminal illness. But she could only access a wheelchair at this point. So instead of getting him to put in new coverage, we're like, OK, we need you to build a ramp from here, here, here. And she had a slightly difficult layout of her house. But he did it. He built this great ramp that would take her around the side and out to the front of the house if need be. And it's, you know, it's. Right.

13:21 If we would just look at the construction of the house beforehand, not assuming that everybody's going to need a wheelchair, but I mean, a ramp to me can still be better than steps anyway. Absolutely. I mean, there's benefits to everyone. Something like a ramp, whether you've got children or you have a stroller for your kids or even just bringing your groceries in.

13:49 a lot easier coming up around than trying to carry them up a step up steps. Absolutely. Now you received your certification from the Rick Hansen Foundation. Now this, their program there, it's getting a lot of worldwide attention. Can you take me through that process? Yeah. Well, I was one of the first ones to do the program. So it might've changed quite a bit since I took the course, which was back in 2018. So.

14:18 really difficult for me to sort of go into too much detail because I might be giving you the wrong information, especially as I did it so long ago. So I think that's something that basically I might need to look into a bit more. I know somebody who's doing the course at the moment and they're doing it online and I think there are courses that are done in Vancouver which you can attend as well. But basically the course is there to...

14:46 The course contains standards for making buildings and other facilities accessible to people with a wide range of physical, sensory, or cognitive disabilities or a combination of all of those. So that's basically the basic aspect of the program. It's designing things that accommodate people of all abilities.

15:15 And to be inclusive as well, that's the other aspect of it, which is very important. So the designs are made to be inclusive. So for example, having an entrance into a building which has steps. So instead of having access, which used to be the case years and years ago, and I think it still is now, where sometimes you'd have to go through the back entrance if you're in a wheelchair or have mobility issues. Whereas the idea of universal design would be to make that.

15:44 so that everyone uses the same entrance to get into that building. So having a ramp and stairs designed in a way that is aesthetically pleasing, but it's also very practical. Now, is universal design something that people or builders and designers and architects could easily wrap their head around? Or is this, are you coming up against some pushback on that? No, not really. I mean, from my understanding of it, the course that the Rick Hansen Foundation are running,

16:13 They're actually trying to encourage people like I'd X and engineers and people from the construction field To actually take the course so that way, you know They have an understanding of what's required and how to make implement those things From this from the drawing stage onwards one of the architects I worked with on a project recently He's actually taken that course now he's actually done the program so you know just by

16:42 sort of me chatting with him and I was going through the process of this building that we were both working on. He's done the course now. So hopefully in future designs of buildings or homes, he'll be implementing some of those standards. So to the best of your knowledge, I mean, you've got experience in both.

17:09 both here and in the UK. How is Canada doing when it comes to adopting some of these concepts compared to the rest of the world? I understand that England has a lot of old buildings, so that might be a challenge. Yeah. I think Canada is doing quite well. I think there are still areas where there's need for improvement, especially when it comes to the leisure industry. Hotels and things are very –

17:38 My experience is that they're very, very reluctant to sort of follow through on things. I travel quite a bit, so staying in hotels and things. I've often said to them, your room looks great, you've got a great, accessible room, but there are things there that could make it better and could make it easier for people with various different abilities. I give them my card and they give me a card.

18:07 You know, say, I'm quite happy to work with you guys or if you want more information, let me know. And you very rarely hear from people after that. So I don't know if it gets passed on to a manager or whether it gets beyond the front desk. So, so, you know, I think there's a reluctance there. But again, as I was saying earlier on, they're missing out on a huge population. We're going to need those things, not necessarily just.

18:33 you know, one out of every 10 customers that might use a wheelchair or a walker, they're missing out on a lot of potential clients there or customers. Well, yeah, exactly. And it's the, you know, the city of Richmond and Vancouver, they're always there, you know, and good for them. They're coming up with these affordable housing concepts and, and, and new builds and stuff. And then there was one recently here in Richmond, where it's like, okay, we've got,

19:01 80, they've built 80 units of affordable housing for seniors and lower income. And they've got four of them set aside to be more accessible. And all I could think of is, well, why just four? Like what? Just make the whole thing accessible. Exactly. And it doesn't have to be that different. You can still have people using it that don't need those additional features. But you know.

19:31 If somebody else comes along that does need it, it's there, ready for them. Instead of saying turning somebody away because you've only got four units that are accessible and you've got six people applying, it doesn't make sense. And especially on new builds, it just doesn't seem to make sense that you could put all those features in. I mean, a good example is, again, I keep coming back to one of my recent projects, which was working for Affordable Housing, Co-Ontario Affordable Housing Society.

20:01 And what they've done in this new building is that they've got five or six units that are fully accessible, but then some of the other units have got in there. The way they've done it with the bathrooms is if it needs to be made into a more accessible bathroom, it's just a question of taking the bathtub out, which is one whole unit, the tub and the wall, and just putting the shower feature in there.

20:28 So that's such an easy thing to do, and it would cost very little for them to do that. But they've done it. So as the need gets higher, as the demand gets higher, sorry, they can make those changes to that building, that existing building, with minimum effort and minimum cost. Yeah, I guess, and you know, in the cost, the whole issue of the cost, which of course some people raise, is, I mean, costs certainly can be prohibitive, I'm sure. But I mean...

20:55 Oh yeah, absolutely. We're not talking about prohibitive costs, we're just talking about, okay, whoever owns the building might have to put two or three hundred dollars into it this month and then you're fine. Yeah, yeah, yeah, exactly, exactly. Yeah, it's looking at it in the long term rather than just the short term. Yeah, well exactly. That's really, really hard for people to sort of get their head around that I think sometimes.

21:24 Yeah, exactly. So, and it's, you know, recently I was at a place in Vancouver and it just, because a friend of mine is actually in a wheelchair and he's a photographer and he came out to shoot something for me a little while ago and we realized that there was, and I mean, when we're talking about old buildings, buildings in Vancouver aren't really that old, they're not like England.

21:48 But, uh, they're not, they're not necessarily as permanent either, but this place had a very accessible entrance, no problem. But the back, the back way out, let's just say there was an emergency or a fire or something at the front, it's stairs. Like there was, there was no way for them to get out. Yeah. Since, since I started working at DDA a few years ago, that's opened my eyes a lot is I kind of look at these things and go, Hey, this isn't.

22:16 This doesn't seem right. This doesn't seem fair. This doesn't seem level. So, yeah, no. Well, and I think, I think that that's where the issue is. That's where the problem is. You've got somebody who says, okay, well, we put ramps in here. So that's great, you know, but they're not looking at the whole picture that that person still needs to be able to get out in an emergency or use the washroom or, you know, be able to access other parts of the building like everyone else. It's not a question of just saying, okay, we put a ramp into, we can.

22:46 get people in through the door. You know, I stayed in places where I, you know, where they're called and said, do you have an accessible room? Yes, we do. And you turn up and it's not accessible at all. I mean, there's one place I stayed at where we couldn't even get in through the front door into our room. So I said, well, how do you expect this to be accessible? And she goes, well, we've got a grab bar in the bathroom.

23:16 and uh... and and i think that you know uh... and i think that's where you know is think about like the uh... recalculation certification and the professional that work with it uh... a very good at doing that and like i said before i think i look at everything from

23:44 entering the building or before I even enter the building. And that's the only way you're going to do it. You know, and not everyone, you know, in defense of most people, they haven't had the experience of having a disability. So they just look at it, well, I put a ramp here, so that's fine. Or, you know, and to them, that's good enough. But not realizing that.

24:13 that people need access to everything else once they're in that building. Mm-hmm. Yeah. Yeah, exactly. Now, in terms of your business, we'll go back and sort of more of a cost related thing. Like, obviously, you give people a report. Does that include an estimate of what it would cost? And do you get businesses just sort of looking at that and going, nah, no way? Or are businesses really coming to you because they do want to make these changes?

24:41 The people that are coming to me, they want to make those changes and so that's quite easy but I don't give them a cost on it. What I do is I basically start by saying, well, these are the things that are good. You've got a building that has got X, Y, and Z positive aspects to it and these are the things that you need to improve on. Now it's up to them. At that point, they can turn around and say, well, yeah, we can't do everything in one go.

25:09 One of the reasons why I call my business step-by-step because the idea is that you don't have to do everything in one go, you start somewhere and it's a step-by-step process to get to that end goal of making a building fully accessible. So, you know, I'll say to them, okay, these are the things that you need to do to make this building more accessible. And then if they wanna go further with it, I can say to them, okay, we can prioritize the things that you need to look at first.

25:39 and the things that can maybe wait for a year or two years. And that way, it instantly sort of makes them realize that this is gonna cost me a year's profit to make these changes. I can do a bit now, a bit next year. We're doing some renovations, so maybe I can add some accessibility features in at that point, and so on. So yeah, so, and then obviously, if they wanna take that next step, then the cost aspect comes into it after that.

26:08 It's pointless me spending all that time and effort to put in cost evaluations on everything when they really don't want to do all that. And I think it's off-putting. And I think it's off-putting as well. Now, are there builders, are there contractors who specialize in this kind of sector? Not really. Not that I know of. I mean, like I said, I don't know of anyone here in the Coalas Valley that specializes in that. But I think...

26:37 Working with builders like the guys that built our house that we live in now, because we were looking at accessibility features constantly in the house to make it as easy for me as possible. They got a lot out of it. Simple things like they were researching, well, we want level entry, so how are we going to do that without causing problems with flooding if it rains heavily? How can we make this?

27:07 So it is level entry and make them realize why that was important for me. Um, hopefully that that's something they've gone away with and next time they come across somebody who's a senior or somebody that has mobility issues, they're going to be looking at those things and thinking, okay, well, you know, maybe you need to have this at level entry to, or maybe you need to have these things in place to make it better, wider doors, so on. So I think, I think, I think by having personal experience, why the builders.

27:36 we worked with, they're going to take that knowledge away and hopefully use it again. Yeah, that would be great. Now in terms of cost and your own personal cost, the one thing that I find that people who don't have a lived experience with disabilities, they don't understand the cost of actually living with a disability. In terms of navigating this world, do you run into these issues where it's...

28:04 It's not just a cost to a business, but it's a cost to you.

28:09 Yeah, I mean, I think that does happen quite regularly. I mean, a few years ago, quite a few years ago, I wanted to get into voiceover work. And, you know, I did an audition tape, sent it out. But there are quite a few places that I couldn't go into because of accessibility. So I lost out on that one. You know, maybe being offered auditions. I wouldn't offer lots of auditions, but.

28:38 I was offered one or two, but then when I researched about the building, I couldn't get in, so I'd say no. So yeah, they were the cost to me as well. Yeah, absolutely. Trevor Burrus So lost revenue. And speaking of revenue, I mean, obviously you've probably heard of the new Canada Disability Benefit giving people an extra 200 bucks a month. What do you think about that?

29:07 But I don't think it goes far enough. I mean, that, what's that gonna cover? A couple of cab rides? You know, it's not a lot. I mean, 200 bucks isn't much for somebody, you know. I mean, I'm in the fortunate position, I'm working and everything else. But if you're not working, and you're on low income or benefits, 200 is nothing. Yeah, and you know, back to other costs. Now, are you, do you use a wheelchair?

29:36 I do. And is it motorized? Is it mechanized kind of thing? I've got two. When I'm out and about, I have a manual wheelchair and around the house and within our local community, I use the powered wheelchair. So I've got two wheelchairs. Like those alone can be ridiculously expensive. Oh man, a powered wheelchair, it's like buying a used car. The cost of a used car. Sometimes more than the cost of a used car. I mean, the one I'm...

30:05 The one I'm using now, I mean, there's nothing fancy about it. And that was around 25 grand, 25,000. That's unbelievable. And there's nothing to it. I mean, it's a wheelchair. It raises up and down. The back goes, you know, the back rest alters. And that's it. There's nothing else that really, you know, there's no bells and whistles on it. Yeah.

30:32 So we're getting kind of down to the end here. What else can an organization like DDA be doing to help foster accessibility? Well, I think you guys are doing quite a bit already, aren't you? I was reading just earlier on today, before you came on, about the fact that you've been working with the city of Vancouver for an accessibility strategy.

30:58 Oh, you've been instrumental in that with other organizations, I'm assuming. Yeah, there's a theory. Yeah. So I think you guys are on the right tracks with things like that. And especially in the city where, um, you know, you need to get to work with, with, with main organizations, I mean, in a small community, one to one might work, but in the city it's, it's, it's a lot harder. I know. So I think you're, you're, um,

31:28 accessibility strategy that you guys are working on is brilliant, really good idea. How's that going? How far have you got with that? In terms of the city strategy? That's not really part of my department. I mean, I chat with a woman who runs that part for DDA and I think she's quite pleased with what the city's doing and the moves they're making and some of the sort of legislation coming forward. So let's, I mean.

31:56 Excellent. Sounds positive to me, so, and that's good. That sounds great, yes, absolutely. So how? Yeah, so I think you're on the right tracks with sort of focusing on, you know, the larger picture, especially in the big cities like Vancouver. Mm-hmm, good, good. I'm glad to hear that Canada and BC is doing well, you know, from your perspective, so. There's always improvement, but you can say that about anything, and very much so about accessibility.

32:26 it's always going to be room to make changes for sure. Yeah, absolutely. Absolutely. Um, and so how can people get in touch with you? Um, they can get in touch with me, uh, through my website, which is, um, step-by-step consulting.ca. Um, they can email me at ramish at step-by-step consulting.ca or my phone number, which I can give you as well. Is that okay?

32:55 Perfect, yeah, if you like to, yeah, sure. Yeah, phone number is 778-992-0556. So those are the three main ways that they can get hold of me. All right, sounds good. Well, you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been accessibility consultant Ramesh Ladd, who has his business step-by-step consulting. He brings his own lived experience to the profession of bringing universal design and consultancy everywhere and to everything we do in society. So thanks for joining me, Ramesh.

33:24 Thank you, thanks again for the opportunity. And I'm your host, GDA Communications Manager, Evan Kelly. Thanks for listening, we'll see you next time.

 

Laen Herschler knows his live theatre. The UBC PhD student has taken the reins of Vancouver's inclusive Theatre Terrific and encourages anyone of any ability to get involved.

 

TRANSCRIPT

Theatre Terrific – Expanding the Horizons for Anyone With the Acting Bug

 

00:09

Okay, we are back for another edition of DDA's encouraging abilities podcast. I am your host DDA communications manager, Evan Kelly. Today we are talking theatre. Joining me today is Lon Hershler, the brand new artistic director of Vancouver based Theatre Terrific. Theatre Terrific production and classes are for artists of all abilities to develop performance skills and collaborate in the production of theatrical works. All of Theatre Terrific's classes, workshops, community and professional productions are

 

00:39

are made up of people of all colours, abilities, genders, and backgrounds. It started in 1985. Theatre Terrific is now Western Canada's longest running inclusive theatre program. It has won numerous awards over the years. And now with Lon at the helm, the future is even brighter. So thanks for joining me today, Lon. It's great to be here. Thanks so much. Now that the gear is working, we can do this. So tell me, tell me a little bit about yourself.

 

01:07

So yeah, I'm really happy to be jumping in here with Theatre Terrific. I've been actually involved with Theatre Terrific as an artist for about six or seven years, working with Susanna, the previous director. I'm an artist, I'm a theatre artist of many different areas of theatre. I do direction, I suppose, artistic direction now.

 

01:35

But my background's really all over the board with theatre as an artist in many different directions and ways. And yeah, quite a while with... So you'd say that theatre acting, that's your lifeblood, that's who you are.

 

01:56

So I would say that I began as an actor and that's where I entered in. I entered in through the joy of acting in theatre and I continue to act, but I've been a teacher and a facilitator of theatre, I'd say predominantly for the last 10 years. And so really working with others to create theatre, devise theatre often, helping others to...

 

02:25

create works of theatre, also doing improv theatre. I do a lot of playback theatre, which is improvise, storytelling and community. So yeah, I have a love for the acting, but I would say I've been facilitating and supporting others in their acting for the last 10 years. Now, are you still an instructor at UBC?

 

02:51

Yeah, so I'm in the midst of doing a PhD. So I started off after my master's degree in South Africa. I did a master's degree in theatre making in South Africa and lived there for about four years and then returned and taught at UBC Okanagan in the theatre department, in the creative studies.

 

03:17

and it was a very alternative theatre department, really helping theatre artists create their own work. And I worked in that for on and off for about five or six years. And then I decided to go further in my studies, in my academic studies, when I moved to Vancouver and I'm doing a PhD and also teaching on the side at UBC as well.

 

03:44

Yeah. So what's your PhD gonna be in?

 

03:49

So interestingly, the work I do at UBC is in something called research-based theatre. And so what I've been doing is supporting academics of all disciplines who want to use theatre as a medium to reach perhaps community, to reach larger audiences, to make their work sometimes make the ivory tower, so to speak, more accessible to...

 

04:19

people that wouldn't necessarily open up an academic journal and read an article, but are definitely implicated and interested in the work that's being done, but would never necessarily have access to it for various reasons. And so theatre becomes this medium, this space for people to interact with new ideas, with research that has gone into community. And in fact, overlapping with a theatre terrific's work.

 

04:49

One of the major projects I've worked on for the last three years has been around a project with People in the healthcare professions across the board so social work medicine Really nursing anything that that intersects with healthcare and People who work in those professions, but also live with a disability and their experiences So there was a very large research project

 

05:18

into the experiences of individuals with hidden disabilities or disabilities that were not hidden and their experiences, the stigmas they might have faced in those jobs. And so then we created a piece of theatre that has been since touring online and in person for three years and it's been very, very successful. And that's not part of Theatre Terrific, that's something else? No, that was not part of Theatre Terrific.

 

05:47

Other than, I suppose, because of my involvement, I create a link between those two worlds, but it wasn't under the umbrella of Theatre Terrific, yeah. Now that, what's that piece called? That piece is called Alone in the Ring. Alone in the Ring. Yeah. And that's sort of touring now, can people go see that? No, I mean.

 

06:11

When I say touring, it wouldn't be, it's not touring in the sense of professional theatre touring to theatres. It would be that we would do a lot of conferences. We'll do medical conferences. We will do all sorts of different, we will do, in fact, like this summer, the incoming students for the physiotherapy and occupational therapy departments at UBC.

 

06:38

all of their incoming classes, first and I think second years, will do the performance for. And it'll become a performance that then becomes a talking point and a place of discussion and engagement with these issues with the students. So these will all be students that, you know, hopefully in a couple of years will be coming out and working in the workforce. And now they're going to have this higher degree of interest and familiarity and consciousness and awareness.

 

07:07

around these experiences of people with disability. And for themselves, if they are students, because there are quite a few who live with disability themselves, amongst the students, this becomes a space and hopefully a safe space for them to start talking with others about their own experiences and creating openness and awareness around that, yeah. Yeah, gotcha, gotcha. So it's really just more of a big education piece, educating people on sort of intersections of...

 

07:33

abilities basically and broadening their own horizons as students as they enter the workforce. That sounds like sort of a new way of teaching in a way. I could see that expanding into a whole bunch of other sectors maybe. Yeah, I mean it's definitely something that's growing. The idea of theatre, we're at UBC not maybe the first to do this. It's happening but

 

08:03

there's been a growth in this and people are starting to open to it and see. There was a lot of pushback at first, you know, in universities, they, they, they go, is that, you know, how can you bring the arts into, is that going to, you know, they, they are also ethical concerns. They think, Oh, is this, you know, are you, is it going to really represent the, the stories accurately of these, you know, research participants? Are their stories going to be really well represented?

 

08:31

And so we have to go through a lot of work of thinking through ethically, of discussion, of going back to the research participants and saying, does this represent you? Does this represent your story? And if there are participants who wanna perform or be a part of it, that's always the ideal in this particular show. None of the participants were performing, but they were involved often in giving feedback. And yeah, so it's something that's growing.

 

08:59

and hopefully there'll be more of this that's gonna happen in different sectors for sure. Yeah, that sounds really interesting and a good way to learn. Why did you get involved with Theatre Terrific?

 

09:15

Wow, because first of all, I met Susanna and Susanna who as maybe some of your listeners may know or those who don't know was the founding artistic director of Theatre Terrific for 20 years, more than 20 years. And she is a wonderful human being and brings so much joy and passion to the work she does. And when I first met her, her energy was so warm and inviting.

 

09:45

And when she told me about what she was doing, I said, you know, and I was already very involved in what you would call applied theatre, which is working a lot in community with theatre, seeing, like I said, that one example of the university, but I'd been working in lots of different ways where we see the power of theatre in so many that it doesn't just have to be on Broadway, that theatre, but theatre has this power to...

 

10:13

capture the minds and imaginations and spread joy and ideas in so many different directions and involve people in different things. And so when I met Susanna and I heard about the company, she was just, and I said, how can I be involved? And at first I just came in as an artist and I just volunteered my time and I just participated and I learned from Susanna how the company works. And I just.

 

10:40

became involved as an artist and I learned so much from everybody that was involved. Theatre Terrific is an incredible space. It's, you know, it's a really, as an artist I learned a lot and as a human being I learned a lot. And so I think there's not always, as an artist sometimes it feels like you're either sacrificing one or the other.

 

11:06

You either are going into the really mainstream theatre and sometimes you feel like you have to sacrifice a part of your humanness to try and make it and struggle in the industry. And on the other hand, sometimes you can feel like on the other hand, you have to sacrifice your art in order to be a part of community building. And then suddenly I found this wonderful nexus, this space that was for me nourishing both of those things.

 

11:36

And that's what drew me to Theatre Terrific and keeps me here. More than just here, there's a new artistic director. Now, how many people are involved in this theatre group? And how many people are differently abled, in a sense? And obviously you don't have any interest in turning anybody away, so you're gonna typically develop people, you're gonna have people with physical disabilities or people with cognitive disabilities. Is it just...

 

12:05

Describe the group to me.

 

12:09

Yeah, I mean, so it's a community. It's a community in the sense that we're not like a theatre company that has a fixed group of individuals that always perform in our plays or always, it's a community that people, some people may come on just for the classes. We offer all sorts of amazing and diverse classes from drum making to theatre creation to dance to, you name it, choral singing.

 

12:38

we offer these different classes and somebody might come in for a class. Other people might wanna stay and be a part of, they might audition for one of our productions and be a part of that. And so there are people that would come for one class and people that come for all of our classes and are in the shows. And so the community is quite expansive and then you have to stay over the years. So some people might come for two years in a row and then...

 

13:08

They take a hiatus and come back three years later, but they're always part of the community. And often they're coming to see the shows and that's all a community of people that... And so I would say that expansive community, that family of theatre terrific is hundreds of people. And then on any given year in the classes, you might have, let's say, 50, 60 people that will be involved in our classes, 70 people that will be involved in our classes over...

 

13:38

a particular season, a particular year. And those people may have been many years in the company, others are coming for the first time. And in terms of the percentage or the diversity, it really, we are, I say, radically inclusive in the sense that we're not asking people to disclose, and therefore we're gonna accept you because you disclose a certain type of disability.

 

14:07

but we make it well known in the community that we do not turn anybody away. And in fact, we encourage everybody to come in and by creating that inclusive space, not by necessarily saying you have to, these are the requirements, but by saying we are gonna make this space as inclusive and possible for everybody that wants to come. I think we get a name for ourselves out there and people very, very diverse. I think people that would never have a chance.

 

14:37

to be in another theatre company or coming into our theatre company and into our space because of that accessibility, because of that openness and that inclusion. And so I would say in my, it's hard to give you a percentage and some people have hidden disabilities and other people don't. But I would say, for instance, in our theatre creation class right now that I'm running with my dear friend, Angelo, we would...

 

15:07

have around 15 to 17 participants. And I would say, you know, 90 to 95% of that would identify as having a disability. Now, you know, very, very, very diverse in terms of that, so yeah. So like in terms of your performances, what's the goal of theatre director? I mean, maybe you've got different goals now that you're taking the artistic director seat.

 

15:36

How many productions would you like to do a year? Where can people see them, that kind of thing?

 

15:43

So we often at the end of each class, so for the theatre terrific, I'll give that example, because we're doing it at the end of each class, we'll do a very small showing of something we've done in that class. That'll be usually an intimate showing for the community of people, but people that might be interested in the class in future years would be able to come maybe to see one of those showings and they could reach out to theatre terrific and find out when those are happening. Those are more informal and more.

 

16:12

community. And then we have larger productions like our Harvest Festival production, which is usually in the last few years has been always timed with the Fringe Festival. So we will create a show this summer and that'll be quite a large production in the sense that that'll be a large cast production. So we usually include about a minimum of 10 performers in that production. And that'll be

 

16:42

in early September, so I think the Fringe Festival this year is September 5th to 15th, and we will perform at the venue which is an outdoor venue on Granville Island, which will be advertised with the whole Fringe Festival and will also be all the dates and times which I'm not fully sure of yet, I don't know if those things have been decided yet.

 

17:08

will be up very soon and they'll be on our website and they'll be also advertised through the Fringe Festival. And so that'll be our big production. And then we have all sorts of other productions that happen during the year. For instance, we're working on another production called Tree Drum, which is with Bill and Bill has been working with Theatre Terrific far longer than me. I don't even know when he began. He's been working.

 

17:38

probably over a decade with Theatre Terrific. And this is Bill's baby project. It's very dear to him and dear to us. It's a story of his, really his story of growing up as an indigenous man, but as a young indigenous person being taken away from his home. And...

 

18:07

and also then his journey to now drum making and the work that he does with drums where he leads the drum making classes in our theatre terrific. But the show which is being created is around his story and will also include for the audience a small circle in the audience to create a drum during the performance.

 

18:34

So it's going to be quite an incredible piece. Yeah, during the performance. Well, as a director myself, that sounds very intriguing. No, it's okay. Yes, I think it's going to be quite an interesting piece. And so we're going to work on that again this year, this summer. Yeah, it's... And then there's another youth piece that we're going to be working on, a youth project where we're going to be inviting...

 

19:01

younger community members to take part in that and we'll create a show based upon that, the details to emerge. But really the best way to get to know about what we're doing is to to check out our website and to link in with us on social media where you'll kind of get all the updates about when shows are happening and when you can see something and when you can partake it in something. So you know it's

 

19:29

and be a part of the community, how you can be a part of the community. Yeah. So do people, I assume because you're so inclusive that you don't need to have a whole lot of theatre experience to take part in some of this stuff. Yeah, great question. So that's a huge part of the inclusion kind of dimension is to also not limit people to somebody that's necessarily gone through a theatre school or had a lot of

 

19:59

background in theatre, we do include everybody, but I would say, or not and, I would say that we make our classes such that anybody can participate, but that everybody's gonna be pushed to a higher level. So that we don't, just because somebody doesn't necessarily have a background, that doesn't mean that they get a...

 

20:24

a card to kind of sit back and say, oh, well, I don't have experience, so I can't push myself. No, we demand of everybody a kind of level of artistic engagement. And that becomes also something that I think people really appreciate that people may think, oh, it's really inclusive. So therefore, we're gonna drop down the level to include everybody. But that's not what theatre terrific is. Theatre terrific is about exactly.

 

20:54

Exactly, you got it. Now in terms of so for people who do have disabilities, maybe visible disabilities, what kind of support do they get from from those running the class or like are people that run the class trained to deal with certain disabilities in any in any way?

 

21:14

So, I mean, training does happen along the way. And I would say all of our work is constant training. It's, we're constantly learning and having discussions about how we can better serve the community and how, you know, with everybody that's involved. And so we're constantly, I think, improving our practices. And, you know, I can speak to that more, but the, in general, in our classes, for instance,

 

21:44

we encourage if people regularly do have a caregiver, that that caregiver is included in the class. And so there are certain individuals that will have a caregiver with them in the class if they need that kind of support. And then that caregiver often is encouraged to be a part of that class also artistically. And so that becomes an interesting part of it as well, where nobody gets, nobody's exempt.

 

22:12

and everybody gets to participate and everybody's part of the process. And so in that sense, we'll have support workers, we'll have caregivers that at certain times will be a part of it. And those that are not with a caregiver, you know, each person at the beginning of each theatre creation class right now that we're doing will be in a circle and there's always a space for people to say they're evolving.

 

22:42

access needs that day because not everybody's needs are the same this week as they are next week and for different reasons. You know sometimes there are yes physical needs and access needs that we've got to be aware of from the beginning and and we know about them and we're supporting and then there are other emotional needs uh different changing circumstances in a person's life that need to be stated at the beginning of a class.

 

23:10

And so we created really a space where everybody states their needs. I'm gonna need this today. I need everybody to know. Yeah. And we find that, since we've been doing that, people are opening up and allowing everybody to know what they need and that creates a space where everybody's needs are met. Now, obviously there are situations where things happen and we realize that...

 

23:39

you know, we need to improve our race. And that's part of theatre terrific as well is that, you know, if somebody says, well, you know, like something happened to me last class, which really didn't make me feel included, or I felt that my needs were not being met, then we take it really seriously. And we sit down with that person, if they're, you know, able for conversation, we talk it through, or we bring in, and we have done this, we bring in advisors from, you know.

 

24:08

different parts of the community because we're so inclusive. There's so many different needs and we can't be experts in everything. And so, you know, we'll bring in somebody from, we'll bring in an advisor from, you know, let's say, you know, one example is coming to my head was we had somebody from the blind community and they felt that, you know, something was lacking in the way that we were doing it. And they wanted to see us improve our accessibility for people in their community. And so we brought in somebody.

 

24:38

to give a whole training for our staff around that community specifically and how we could make it more accessible to them. And so that's how we work. You know, we the best we can. And then you met you then you've just reached another level. It's instead of universal design, you've got universal theatre. Is there an age limit for this these programs or are you mainly targeted towards adults? For our classes, we it's it's adult.

 

25:06

However, like I said, we have different programs and that's something that we would like to to evolve is to have something maybe more of a youth program as well. But within the adult range, definitely no upward limit. In terms of youth, like I said, we've got a specific youth program that we're hoping to launch this year. So stay tuned for that.

 

25:35

But yeah, our main classes are usually for adults. That being said, that could be from, I don't know, it's a good question. I'm not 100% sure where we would draw the line. I don't know that I know the official line, but we have people in the class that are 17, 18, so I guess they would qualify as youth. Yeah, I guess so. There's a whole other market there for even kids younger than that that I think could

 

26:04

tapped into, which would be amazing. So expand a bit more on Harvest. This is your big annual production. What's any idea what this year is going to be about? Have you started working on that? So a little bit, definitely drawing the team together, thinking through some ideas. We one of the ideas that I had or one of the ideas that I want to kind of like

 

26:34

encourage us to continue developing inside of Theatre Terrific is that, so I'll back up for a second, the harvest, and this might inform the way I explain it, the harvest is this idea of a show that kind of, like the name suggests, brings together, is like the harvest of all the work we've done that year. So if all of our classes and all of our...

 

26:59

different projects are building skills and building community and building ourselves as theatre artists. The show becomes a way for us to kind of, in a little way, tie things together and, or bring out and harvest a lot of all of that. That doesn't mean that everybody that was involved all in the way is in the Harvest show, but it means that things that came up that...

 

27:27

beautiful moments and ideas and skills that were developed over the year come together in a beautiful way in the show, in the Harvest production, which is created during the summer and is a devised production, which means that it is created from the cast, from the bottom. So yeah, the cast and the directors and the, are all co-writing and creating the piece together. And so it becomes...

 

27:56

a very collective creation piece. Obviously, the director has to make some choices and we make some choices about the text that ends up being the final text. But what is being suggested by the co-creators, by the participants, by the actors, becomes integral to the piece. And this year, the theme that we've started to explore and which...

 

28:25

in the theatre creation class is the idea of inside and outside. So kind of juxtaposing that as a theme, what the difference between things that occur, you know, in all different levels, inside and outside. I mean, I think it's a theme that on a literal level has a lot of resonance post-COVID-19 where a lot of us, you know.

 

28:54

So, because on a literal level, that idea of these indoor spaces and theatres typically done indoors, but then our show's going to be outdoors and what does that change? That's on a very literal level, but then we can all think of the different layers and understandings of where we decide this idea of things that are inside of us or things that are outside of us or worlds that are outer worlds and inner worlds. And so we're exploring those themes. Where it's going to go?

 

29:24

Who knows? Not necessarily, just in my head. Exactly. Skies a little bit. Yeah. That could be interpreted in a lot of different ways. And you aim to be doing that on Granville Island you mentioned. But is this something you'd be charging for? Is this free admission kind of thing? So the Fringe Festival does, there is charging ticket prices. However, we usually find a way to include anybody that...

 

29:53

wants to be included if it becomes an issue for you to pay the Fringe Festival prices. We usually have programs to allow people to come in. So don't let cost be something that gets in the way from being a part of it. And how long of a production is your Harvest Productions? Are these? Like how long will the piece be? Yeah.

 

30:20

Yeah, so it's usually I would say it's around an hour long. Well, these are that's pretty involved for theatre. Like, how do you when it comes to to theatre in Vancouver, how do you think how's it going? Is it is it is it hard to get people out these days? I mean, you look around at the Netflix and everything and everything VR or AR that people are doing these days. How is live theatre surviving in Vancouver these days? So I, you know, that's it again.

 

30:50

such an important question, I think, something that everybody in theatre is thinking about. And, you know, on the one hand, I would say, yeah, of course, people are, you know, have entertainment at their fingertips in their house in ways that they've never had before. And that's obvious. And the choice is overwhelming. And, you know, there's all those things. But what, obviously Netflix and...

 

31:19

all of these different providers don't provide is community. And the kind of the live interaction that live theatre produces. So in a way, as I think the pendulum swings has swung towards, you know, kind of all this access to online entertainment and streaming, we're gonna see, we are seeing a pendulum shifting towards people.

 

31:47

wanting and needing different forms of interaction with human beings and with others. And I think theatre as opposed as, or in juxtaposition to film and television offers that. And so are we getting, are we aiming to have thousands of people at our productions? No, but we are definitely getting lots of people that,

 

32:14

You may notice that we're filling up on our classes and we are getting, yeah, and we're getting lots of people to come out to our productions. Can we grow? Of course, we'd love to grow and have more and more people come. But I think there is that. And I think as, you know, and it's another thing that as AI develops as well, we're gonna see the ironically an increased value in the creative arts.

 

32:44

Because. So now there's sorry to interrupt, but now now there's I think we've just come up come up on a big piece of your your harvest about inside and outside. We're talking about games. We are like getting back into live theatre. There's now there's this juxtaposition. You're welcome. Well, yeah, I mean, that's it. That's the that's that's it. And and I think yes.

 

33:12

Thank you. I mean, I think, do you want to, do you want to be a part of the cast? I should be, I should be at this point. Yeah. I mean, that's, you know, you're making me think that that's such an interesting, you know, dimension of this is that, is that moving from the inside to the outside? Also is that movement from, you know, being stuck in our bedroom to, to coming out and being outside with others, you know? So yeah.

 

33:37

So you say your classes are popular because I know I noticed on your website the spring theatre creation class is fully booked. I don't know if that's still going or now we're getting a little bit past spring. Do you normally fill up all the spaces in your in your in your classes?

 

33:53

Um, yes, I mean, we often get a good turnout. All classes are different, so some of the classes fill out, fill up quicker than others, especially if we're gonna mount like a new class, then that might not fill up as quickly because people aren't familiar with it. Theatre creation has been around for a while, and so I would say that that one fills out the quickest. But yeah, we get really good turnouts. And, um...

 

34:22

You know, and people come back. People come back year after year. We have some people that have been in the theatre creation class as far back as I've been there. So that means at least probably seven years in a row. So, you know, that's always a good sign. Yeah, for sure. Now, do those classes cost money? Again, I think you sort of touch on this idea that Theatre Terrific is not, you know, we're not gonna refuse people over money or something like that. So...

 

34:50

The classes do cost money, and outside of that, where else do you get your funding?

 

34:56

Yeah, so they do. There is, again, exactly like you said, there's a cost, but we never turn people away. And we always have ways of allowing for people to be a part of the class if financially there's obstacles. And so we make it as accessible as possible in that way. Where does our funding come from? You know, we're still...

 

35:24

largely at this point dependent on government funding. So we do get a lot of Arts Council and different Council funding. So the Canadian Arts Council is a big part of our, of how we get our funding. That's a big source of our revenue. But we also, you know, the community.

 

35:50

So there are people that see our work that are part of the community that also then come to fundraisers and we do some fundraising through that. So we gain some money through fundraisers throughout the year. And we are in the midst of trying, we were in the midst of hiring somebody to do to try and branch out and to do corporate funding and just to see if there are corporations out there that that want to have theatre terrific.

 

36:19

as somebody that they support and see as teaming up with to get their message out and our message out in kind donations. So, you know, media companies that maybe want to donate in kind and then, you know, be a partner in the work that we do. And so we're looking to branch out in that way, for sure. How many staff, like how many full time staff does the theatre have? Oh,

 

36:46

We don't actually have any full-time staff, even me, I'm not full-time right now. There are, I would say, in staff, inwards of around three or four fluctuating staff members. And so, yeah, so nobody there is full-time. We all have other work that we do and then come on and work for for Theatre Terrific in certain capacities.

 

37:14

as we grow and as we develop in our corporate funding and in our government funding, we hope to grow and be able to have a much bigger staff and be able to include more and more people in our projects. So there's lots of volunteers as well? Yeah. I mean, I would say we try to pay people as much as possible. But obviously there's always space for volunteers. So whenever we're doing a production, if people want to volunteer and help with front of house or in different ways.

 

37:44

Um, you know, we're always, you know, embracing of that. And people sometimes just want to be around the excitement of a theatre piece. So people want to be there. And so we always encourage that, but as much as possible, we try to pay people and honor people's time and efforts in, in, in, in, in some ways. Um, so that's one of the things that we do is to try and, and, uh, include people. But.

 

38:12

For sure, people do want to volunteer. And our board, which is a huge part of this, is volunteer. So in every organization, you have a board, and we have some very active board members. So yeah, that becomes important. Yeah, well, that sounds really good. Anything else to add today? Like, have we not touched on anything else that you think that we need to chat about when it comes to theatre terrific?

 

38:40

You know, just how, you know, I want to say how I really, and this comes from really the bottom of my heart, that, you know, if anybody out there that is listening to this and is kind of on the fence around, you know, I have some artistic interest, but, you know, I don't know. I'm not sure if I have what it takes. I, you know, I.

 

39:10

I don't know if it's really gonna be accessible for me. Is that, you know, I really encourage them to take the jump off the fence, so to speak, and come in and, you know, experience some of the work we do because it is so wonderful to be a part of this community. And the, you know, the amount of...

 

39:39

smiles and joy that I see around me and that I experienced in myself through the work is so inspiring. And I think it's just, it's, you know, I just really encourage everybody to, you know, to not hold back if they have that. Cause I know we all have that little voice and every artist has that little voice on their shoulder that's been there.

 

40:08

since they were young, it's always like, oh, you're not really an artist. You're not really, you know. Is this really a good idea? I know the feeling. Exactly, and we all say it. So you've got to turn to that little person on your shoulder and you just got to say, be quiet. Get off my shoulder right now. I don't need you right now. And then jump in. That's what I would say. Yep. Yeah. Absolutely. All right, so how do people get in touch with you long? How do they get involved with the theatre?

 

40:38

So, theatroterific.ca is our website. There's many ways to, there's ways to get in touch and to contact, to link up with social media through the website. And there are contact details there for the company to reach out to us by email. And that would be the best way. And I'm artistic director at theatroterific.ca. That's my email. So if anybody wants to reach out to me.

 

41:07

Personally, that's artisticdirector at theatreterrific.ca. So yeah, please reach out and let me know that you're out there and in any capacity that you wanna be involved, we have space for you. Yeah. Well, that sounds awesome. You have been listening to DDA's Encouraging Abilities podcast. My guest today has been Lon Hershler, the new artistic director of Theatre Terrific. It's a company based in Vancouver and they welcome actors of all abilities.

 

41:36

to come and explore the wonderful world of theatre. Lon, thanks again so much for joining me today. Thanks so much for having me. It's been a huge pleasure. And I'm Evan Kelly. See you next time.

 

It's a long process, and it's not cheap. We chat with the founders of Leash of Hope Assistance Dogs who are doing everything possible to meet the demand for service dogs to help the world become more accessible for people with disabilities.

TRANSCRIPT

Filling the Gap - Leash of Hope Assistance Dogs

 

00:04

We are back with DDA's Encouraging Abilities podcast, where we talk about all things related to disabilities. I'm your host, DDA Communications Manager, Evan Kelly. Today we are joined by Danielle Main and Tessa Schmidt, who are founded Leash of Hope Assistance Dogs. I've wanted to talk to them for a little while now. That of course sums up what that is. We're talking about doggos. We're big fans of dogs here at DDA and anything that makes things more accessible for people with physical or developmental disabilities.

 

00:34

Thank you for joining me today. My pleasure. Thank you. All righty. So Danielle, tell me a little bit about yourself. So as mentioned, I'm one of the co-founders of Leash of Hope. One of the things that we're very proud about, and I'm very proud about is the fact that our organization is run by two women that both have disabilities. I am low vision blind with optic nerve dysplasia.

 

01:03

And amongst running Leash of Hope, I'm also a full-time registered massage therapist and train as a competitive rower. So, oh, wow. That's a that's a lot of physicality going on. Yeah. And Tessa, what about yourself? I. I have a special career, and my main role in Leash of Hope is to train the dogs and the clients.

 

01:33

And alongside of that, I work with children as a BI. Oh, okay. That's interesting. So did you both found Leash of Hope Assistance Dogs? Or is this mainly your thing, Danielle? We both found it together. So when Tess and I came together, we both had...

 

02:01

very complimentary skill sets. And we noticed that there was a need within the industry and the community of people with disabilities that we felt like with our unique skill sets that we could kind of bridge a gap and fill. So the two of us together, me having more business background and my background with dogs was, more dogs with like behavioral issues. And then Tessa having a more formal background education and...

 

02:30

service dogs and dog training. We felt like our skills were very complimentary to be able to start something from the ground up. So what is your background with dogs?

 

02:43

So my, oh sorry, go ahead. No, Danny, I think that was in the... Oh, I'm so sure. So my background with dogs, first and foremost my education was doing equine sports massage, which led into extracurricular education in canine massage, and from there I spent some time working in vet clinics and then as well as

 

03:12

working in a grooming salon as a grooming assistant, as well as being a professional border for dogs, especially dogs with behavioral or medical needs. So that was my background with dogs before starting Le Chappot. And what about you, Tessa? I apprenticed under several service dog trainers.

 

03:39

that works with multiple different organizations and have learned a lot through hands-on and working with the Balanceable Canine Program as well. Wow, that's interesting. Now, Danielle, equine massage, canine massage, is that... I mean, equine massage, I've got friends who get involved in horses, so I understand sort of the need for that, but I've never heard of canine massage before. Is that a thing that people... Like,

 

04:09

look for that kind of a service? The main reason why I would get requests for that type of service would be anything from like dogs that were in some kind of sport, same as kind of with people, same as with horses. And, you know, the dogs might have very physical sport needs of whether it's dogs that are doing like agility or barn hunt or any kind of like,

 

04:38

canny cross and so just like people end up developing aches and pains and imbalances and then I'd also work on a lot of like steamer dogs with aches and pains and imbalances so Interesting So you you started Leash of Hope because you saw a need tell me tell me about that in you know I'm not someone who identifies with a disability so I Wouldn't recognize the need for a service animal or a service dog what?

 

05:07

What are the barriers that people are facing in order to access this type of service?

 

05:16

Um, so I would say that the biggest barrier would be availability, especially for properly trained dogs and the most evident way that that can be seen is the amount of people that are trying to self evaluate the necessity for dog and then train on their own because they don't feel like the resources are available for them to get.

 

05:44

professionally trained service dog. And if you look at, especially when we founded the organization, what was available at that time, it was very minimal, especially within BC. And so because of that, Tessa and I, both being people that were very active, that had unique needs, recognized that there was kind of a lot of gaps within services that are being provided, mostly because

 

06:12

of how long wait lists are for some of the bigger programs or how much people were having to go out of province to acquire a properly trained dog. And then the alternative to being people trying to, like as a lay person, raise and train their own dog and self-evaluate if it's appropriate didn't seem like the best option either. So we decided to go into this venture trying to fill that gap.

 

06:41

For someone like me, I'm quite ignorant about this process. Now we're talking about service dogs. Is that the same thing as a seeing eye dog?

 

06:53

Um, it falls under the umbrella of an assistance dog. Service dogs are considered generally like different as a seeing eye dogs specifically, um, or, or guide dogs specifically see seeing eye dogs or there's actually a school. Uh, so a guide dog specifically is a dog that's meant to guide and navigate, uh, someone with sight loss through a rigid handle often, or some form of handle.

 

07:19

But they all kind of fall under the umbrella of an assistant or a working dog. So what about the animals that you two train? What are they designed to do essentially?

 

07:34

We have three categories of dogs. So we have three divisions within Leisure of Hope. One is the guide dog division for people like myself who are low vision or blind. We have mobility dogs under a mobility division. And those are dogs that are trained to provide assistance to someone who has mobility challenges. Maybe they're wheelchair users. Maybe they're able to walk.

 

08:04

with an aid or they need walking support, people to walk, to ambulate properly and comfortably. And those dogs are tasked trying to often to do things like press buttons and pick things up, take off coats and socks. Yeah. And then the last division is our medical alert division. And those are dogs that are trained for people who are deaf or hard of hearing, may have other forms of invisible disabilities like PTSD, autism.

 

08:33

And the dogs are trained to do things like alert to when it's time to take medication or turn lights on, you know, sometimes even pull blankets off of kids and going, come on, we've got to get you a bed or find an exit if someone's in a state of distress because of the environment they're in. So all three divisions have very different specific tasks that they do for their handlers. Now, now Tessa, I would imagine.

 

09:02

given that there are three categories of training, there's gotta be three different approaches to training. Now, would you, like, say you select a dog. I'm gonna get to that selection process in a minute or two, but if you select a dog, is it, it's then trained specifically for one category, or can you train a dog for all categories? We do, that is a specialty of our program. We do cross train our dogs.

 

09:31

but they're all trained to a baseline of tasks. And then once they are matched with the client, the individual, then we finalize the training and put in more specific training if required to the individual. Now, how do you go through the selection process for an animal or a dog rather? Like how do you decide, this one's gonna be really good, let's train him, this one not so good, we'll...

 

09:59

find them a family or something like that. Where's that selection process?

 

10:05

So we do a lot of testing throughout the dog's entire time in the program during their in training period. We have our assessment upon intake and then monthly assessments after that where we where we go a little bit they're inclined to work still that they are are wanting

 

10:34

can be in this field.

 

10:39

And do you get into the training process and then discover that maybe this, you know, one particular dog isn't a good fit and then you sort of got to start over again? Yes, sometimes that does happen. Okay, so that and where like, where do you where do you get the dogs? Are there specific breeders that that sort of target your industry?

 

11:06

We do work with a few selective leaders. The majority of our dogs are actually rescuer dogs. Oh really? Yes. So you're sort of solving a couple of problems, not just assistance dogs, you're giving these dogs purpose and a home essentially? Correct, correct, yes. And we rescue dogs from all over North America. Oh wow.

 

11:35

What about Mexico? There's lots of good dogs down there getting rescued.

 

11:42

Um, Danielle, I think we definitely do have dogs from, from, uh, Mexico test is prompting me because of the original leash of hope dog was my guide dog, Pedro, uh, who came to me with that name as a street stray puppy from Mexico. And, um, one of the things that's neat about that is, is, you know, our motto is we provide hope at both ends of the leash for that exact reason. Cause we, we, you know, fulfill that purpose, but that's part of why we do such extensive testing and we work with our network.

 

12:12

to pull dogs in. And if nothing else, if we pull it, we rescue a dog or young puppy, and it can't work for a program. If nothing else, it's probably has a pretty decent temperament to be to have caught the attention of, you know, someone in our team, and it'll still make a great family dog, you know, a good member of society. And so it does, you know, double duty in, in doing a good thing, whether it helps our program or not.

 

12:42

Now, on that note, are there specific breeds that make better assistance dogs or better guide dogs? Because I noticed I've bumped into you both at our leisure fair, and it's not what I would have said as typical assistance dogs. They were like, you know, like some other kind of breed. So, yeah, I could just speak to that a bit. That's where the rescuing comes in, because we are a small enough organization that through all of that testing that we do.

 

13:10

We often end up with dogs that maybe wouldn't typically be working. And that's the nice thing, because we really test and look at the dog's individual temperament. We do end up staying away from certain breeds as far as ensuring that we meet municipal bylaw concerns, because there's lots of places, unfortunately, that there are breed restrictions.

 

13:38

Um, and in that too, you know, we, we do acknowledge that there's sometimes, um, inherently some problems if you're wanting to train a dog that, uh, might have a reputation for, for aggression. And some of that can be true. And then some of it also may not is really comes out to individual dog, but we recognize that that becomes a factor regardless. And so because of that, we do.

 

14:06

end up avoiding certain breeds and then otherwise the dogs that we look for have to be really solid in their temperament. They also have to be a certain size so that they're safe walking around in public especially in crowds and they have to be work-driven as Tess have pointed out and they have to not be protective in case you know something ever happened to a handler they need to approach someone or someone approaches them. So there's all of these things that we look for.

 

14:35

that aren't necessarily breed specific. And that also helps us because there's lots of people with different lifestyle needs and different breeds can fit those better for individual people. So my love for Chihuahuas means I'm never going to get a Chihuahua assistance dog. Probably not. But aside from that, too, part of what makes an assistance dog is that there has to actually be a need for someone to have one in public.

 

15:04

So besides for the Chihuahua thing, if an individual, as much as every people like dogs and they want to have a dog with them, there actually has to be a medical necessity that the dog is providing a purpose to help them to be in public. Yeah, of course. So I would think something like a lab or like a black lab or a yellow lab, those would make really good assistance dogs. Is there any particular breed that is one that kind of shines better than the others?

 

15:33

Uh, I think you could start a really big debate there. And I think that I would be trending on, on, uh, into delicate territory by saying that, um, I mean, personally, so my last dog, Pedro, the one who was a Mexican street stray, he was part red healer and Greyhound. He was a high energy dog and a really active person. My current dog is a standard poodle.

 

15:55

And so my dogs, for my specific needs, are these high energy dogs to keep up with the long days that I do of, you know, my job and training and different things. So I would have a very different bias and answer to that question I think then, you know, Tessa there who has a real love for labs, Tessa has a giant golden lab. Yeah, so I think the joke that I kind of make is for a guide dog.

 

16:24

Hmm. Labs and golden retrievers, I kind of make the joke of that they're really great for for being used as general program dogs, especially for handling to lay people, because they're so friendly and happy go lucky and easy going and even if they make mistakes, people are like, oh, that lab's funny. But they're kind of like giving someone who's learning to drive the guide dog will say or just drive, you know, like a Toyota or Honda Civic, whereas my guide dogs are like

 

16:52

driving a Ferrari for a guide dog. So you can't hand them to anyone. There are a lot and they test and challenge you but that's exactly what I need in a dog. And maybe one of you could speak to this, the question about, you know, what if there is, it's one thing to train the dog and get them up to speed, not mentioning Ferraris, but.

 

17:19

Is there sometimes an issue where a dog is not compatible with a client? Yes, yes, there is. And at that point, even though we've run all these checks and balances. Every school has hit this concern at some point or another where the dog is just not the right fit for the individual. And we would.

 

17:48

take the dog back and place another dog with the individual and place that dog with another individual. That's more suitable for what that dog's personality traits are, energy traits are. It's quite challenging for the dog because the dog is trying to bond with the individual and then moving on to another one and the individual as well, because they put a lot of thought into coming and applying for a dog and the process is long.

 

18:18

And it's hard, but eventually we find the right fit. And usually we find the right fit right out of the gate. Well, that's good. That's good, because I mean, your website says it could take up to 10 years for someone to wait for a dog. That seems like a ridiculously long time to get a service animal like that. That seems unfair. Why is it like that? Is there just not enough supply to meet demand?

 

18:48

Yes, that's you. That is the case with a lot of the schools and COVID did do a number, so to speak, on the amount of dogs that schools are able to produce because of the lack of socialization that happened in that period. And more people are needing the assistance of a service dog. Or an assistance animal, I should say.

 

19:16

So is that something we need to be focusing more on? Do we do we need I mean, do you for a service dog, where would someone get their funding? Is that are you guys supported by government programs or anything? Or is this covered by anything? We do a lot of like fundraising and we work hand in hand with our clients to fundraise for their dogs. We never expect anyone to pay out of pocket. There is some government funding out there, but I think.

 

19:46

The biggest thing is, I think actually comes down to a government level where we need to encourage the, our province as an individual to support the development of more professionals and programs to meet the supply that's out there. And that would help solve the problem as well as discourage people from putting a vest on their dog and going into public.

 

20:15

And then would also reduce the wait times on things if the government worked with an acknowledged more professional programs or individuals who are providing dogs at a standard that's being met for individuals. And I think that would help solve a lot of the problems. And lots of programs, including ours, do heavily rely on things like donations and fundraisers.

 

20:46

to be able to supply people with these dogs because they are expensive. So if I was to come to you and say, I would like a dog, I'm not worried about the money, how much from start to finish, assuming you've identified one of the categories and what I need and you needed to train a dog from start to finish, what does that cost? To be honest, it actually doesn't matter whether someone has the money or they don't. We're always gonna tell people it's a fundraising process because we are...

 

21:15

a registered charity, it's not like you're coming and buying a dog from us. But in total, the value of one of our dogs is about fifteen thousand dollars. What sort of issue like how long have you guys been in business?

 

21:30

This August will be 10 years, eh Tessa? Yep. Decadent. Nice. So what sort of issues did you face getting Leash of Hope off the ground? I think the biggest thing is that lots of other programs start as kind of satellites of bigger ones of other programs other places. It's not very common that you

 

21:57

that programs start from ground based up and for us it was really important that we built a program that met um assistant dog international standards and at that time the information on what that meant was readily available so we were able to take their standards and build our policies and training program based off of that. It was also important for us to to be an organization that actually

 

22:27

for someone like, especially with Tessa's background, to build a business, a for-profit business as a service dog trainer and go, give me $10,000 and I'll train a dog for you and then send people off. But for us, there was a big efficacy piece on trying to make sure that we were supporting the disabled community, a lot of which is like low income and also to hold the clients we work with responsible.

 

22:57

to a standard of training. Whereas the downside of being, I guess like for profit, especially in someone like Tessa's case, who could just go and train a service dog, is that once she's done the training and being paid, she doesn't actually have any ability to check up and make sure people are handling the dog appropriately in public anymore. And so for us, it was really important that the people we decide to hand these highly trained animals to be in public with.

 

23:26

were being held to the standards that ADI set that we were incorporating into our program. So they had the open the... So that... Yeah, sorry, go ahead. I was going to say, so that was definitely like the hardest part because we were starting with what we wanted to do in mind and we were starting from scratch. It was, you know, that was probably the hardest part about starting out. I would say, I don't know, Tessa might have a different answer.

 

23:54

But that is it is interesting that, you know, it's not just about the dog. It's about it's about making sure the people that get the dogs sort of know what they're doing. So is there a training aspect to that as well? Maybe you could answer that, Tessa. Yes, there is. So what's unique about our program compared to other programs is we spend a year working with the client after they receive their dog. And

 

24:23

We expect the client to commit to a certain number of hours over the course of a year where we gradually see them less and less and less so that we can ensure that the training is Followed and that they can maintain our level of training requirements.

 

24:46

This was designed because we felt that going to a school for two to four weeks and having all that information dumped into your brain was not retainable.

 

25:04

for an individual, or sorry, was not attainable for an individual to remember it all and then go home, back to their home environment and work with their dog independent of the program at that point. Now, Danielle mentioned an international standard. Where do these international standards come from? Who sets those?

 

25:32

Assistance Dog International is the recognized accrediting body of Silver Dog Schools. And so you kind of get accredited by them? How do they just come here and see what you're doing? Or how does that work? So international accreditation is quite a strenuous and extensive process for any program. We were well on our way down that stream to get that done pre-COVID and then

 

26:01

you know, the pandemic definitely put a damper on it. We previously did apply for ADI and we met a lot of the checks and balances except for the fact that in the States, I guess a nonprofit there is what our charitable status is here. So we'd applied only with nonprofit status and hadn't quite gotten charitable status yet. And so we had to return to it unfortunately and then the pandemic happened.

 

26:30

But it's quite a bit of red tape for programs to go through because at that point your dogs are at the highest level of recognition internationally. And it means that you meet the highest, you know, standards of training available and efficacy as far as ensuring that your dogs are being handled well and your clients are representing you well and are managing the dogs appropriately. And so not just any...

 

26:59

dog trainer or business can apply for this standardization at that level. And that I guess that leads my to my next question is what sort of competition do you have locally? Like how many how many people are in this game supplying dogs to people? Oh you know I don't think it's an issue of competition. I think the more people that are professionally properly training dogs out there the better.

 

27:26

where we have issues and I guess our biggest competition is people feeling that they are equipped to put a dog in public because they're watching things like videos online and it's not so much a competition as much as like I guess it does impact what we're doing because then you never know what you're going to encounter in a public place. And then there's definitely some people and trainers that

 

27:55

monopolize and make money off of that by telling people they will support and help train their dogs to be in public places. And again, there's that level of problematic discrepancy where it means that people aren't being properly supported to have their dogs in public. So I wouldn't necessarily say it's a competition issue. But those are the biggest things that I guess. It's a quality issue. And that's, that's where when we have people that come to us and go, oh,

 

28:22

Well, that's a lot of money to fundraise. I'm just going to go and buy a puppy and watch YouTube videos. That's that's where it becomes the most, I guess, problematic. At this point, how many dogs have you and Tessa been able to train? And adding to that, how many trainers have you got working for? Is it just you two running the show or is there is there more behind the scenes?

 

28:46

Um, we've trained 40 plus dogs at this point. We don't have that many teams because we are also because we've been around for 10 years, we're into that cycle of, we do prioritize people who have been approved in our program and already have dogs and we've got dogs retiring and we're needing to place dogs with existing clients. And we have a team of three main staff and then lots of volunteer power. Oh, nice.

 

29:16

And that must be difficult too. I mean, when you work with your own assistance dogs, obviously you're bonded to this animal, perhaps at another level than just a regular pet. So that must be hard to sort of say goodbye and then move into another animal. Yeah, both Tessa and I can attest to that. Like I said, my original guide dog, Pedro, was almost 10 when he retired.

 

29:44

And now I'm on my second guide dog, Starling, who you would have met with me at the leisure fair last time. He's the standard poodle. Yeah. And then Tessa, I'll let you speak to your own, but it's never easy. No, it definitely isn't. An incoming dog has some big cues to fill.

 

30:13

They will feel them in different ways is how I look at it. And so when when a dog like Pedro, for example, he's retired, is it is that because he just can't really do the job anymore? I guess they sort of start to, you know, not do as well just as any human would who's who's getting older. Yeah. And in Pedro's case, he did sustain an injury and you could tell he was kind of like not feeling it as much, not as as a

 

30:42

as keen to work and also being an older dog I think was he reminded me of like the grumpy old man yelling at people to get off of his lawn especially around the younger puppies in training so it got to that point we're like okay buddy it's okay um but in his case he just he has a retirement career now uh my my parents live remotely and uh his job is to supervise

 

31:10

you know, the collection of wood and things and stuff in my dad's workshop. And, and so I think he'll always be a dog with a job to some degree, at least in his mind, don't tell him otherwise. And as much as I wanted him to retire and live out his day directly with me, him being moved to family where he wasn't watching another job was much better for him. That's interesting. Sounds like a real good boy. Yeah. It's pretty incredible.

 

31:39

What else can organizations like DDA be doing or can we do better to support organizations like yourself? We love when we get invitations to come out places. I know we've connected at the leisure fair promoting whenever we have a fundraiser or any kind of participation where we're out in the community is always great. We love getting our dogs out into the community.

 

32:05

with people. We love collaborating with other organizations and figuring out how we can support that collective community between the two organizations. And that's, I think, is the best part and the best way that we can kind of be helped. So before we wrap things up here a little bit, how do people get in touch with you? You can follow us on social media. We have Instagram and Facebook with Lechapote.

 

32:35

We also have a website, leashofhope.com, where people can reach out by email. We do have an office online, but if you ever call it, it usually says that if we don't answer it, because we're out with the dogs, but we will call you back, then it's all available on our website. And definitely coming out and connecting with us in person when we're at events is another good way to find us. Absolutely. Just one sort of

 

33:03

final questions are sort of backtracking a little bit. I'm just interested, always interested in sort of the process of this. If someone comes to you, how long, like you said, some people need to wait 10 years for a dog, not because of your business or anything, but in particular. That's a general stat. If someone comes to you and says, this is what I need, from that point to the sort of the finished product, how long does that take? That process can

 

33:32

be anywhere like, you mean the application of coming in. So the way that that works is that someone goes on to our site, there is a little self-evaluation to decide if, to help you decide if you want to apply. Once we get that in, then there's like a phone interview and an in-person one where we gather what you need. And then basically you have to play the waiting game until you get the email that says we have a dog for you. And that can be anywhere from six months to two years.

 

34:01

We generally try to make sure that if someone is missed in the immediate placement season after they've applied that after that we specifically will look for and train a dog for that individual if they've been approved. And then, as Tessa mentioned, then they spend a year of support in our program before graduating and going off in the world, so it can be a. It's a bit of a process, but it's a lifelong, it's a lifelong learning.

 

34:29

Yeah, absolutely. We'll be in like TESF. Can you speak a little bit about the actual training process for say like a Mobility dog. How long is that and how difficult is that? I mean that must be training dogs to do specific jobs seems difficult because I was very poor at it with dogs, but I mean tell me about that process a little bit

 

34:54

Um, so we, that process is a two year process. The dogs all go through basic obedience and advanced obedience. And then we do task training after that. Um, we do heavily rely on our volunteers as well to take them out in the community and further ensure that the tasking, like teaching them to push a button is.

 

35:24

able to happen in any environment. But a lot of the groundwork starts with the fosters and then their training sessions with us as trainers, where we lay down the baseline and then they build it up from there. Now, can you, is it possible to teach an old dog new tricks or do you have to start with puppies? No, it is possible to teach a older dog.

 

35:51

We prefer puppies, but we can take in a dog anywhere from 12 weeks to two years, as our usual timeline to intake a young dog. All right. So, do either of you have anything else to add today? I mean, I don't think so. I really appreciate you taking the time to connect with us and meet with us. And

 

36:17

And it's just great to connect with some more of the community. Hopefully we'll be able to connect with DDA and some of the other patrons out in the community in the near future. Yeah, absolutely. We'll keep doing it. Well, you have been listening to DDA's Encouraging Abilities podcast. My guests today have been Danielle Main and Tessa Schmidt. They're the founders of Leash of Hope, providing assistance dogs for the disability community. Thank you for joining me today.

 

36:48

Thank you. I am your host, DDA Communications Manager, Evan Kelly, see you next time.

 

The disability community must have self-advocates. Meet Elliot Hedley, budding songwriter, filmmaker, and screenwriter on why being a voice for his community is so important.

 

TRANSCRIPT

 

Elliot Hedley: Disability Advocate One Song and One Documentary at a Time

 

00:19

Welcome back to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Now with me today is a friend of the association, Mr. Elliot Headley. Elliot is an extremely creative self advocate who creates music and films, which we're gonna talk heavily about. Having studied film at Capilano University, he uses his craft and abilities as a tool for advocacy.

 

00:45

Navigating life with cerebral palsy, he dedicates himself to uplifting the voices of individuals with disabilities. His commitment extends beyond the screen. He actively participates as a peer mentor in the possibilities...

 

00:59

Social Media Fellowship. Now Possibilities is another organization here in the lower mainland that supports people with disabilities. He operates his YouTube channel Red Fighter Productions 96 where he showcases some of his advocacy work and music. So Elliot, happy to have you here today. Thank you very much. Okay so Elliot, tell me a little bit more about yourself in terms of the music and film and stuff. So film, like it's not a film. Film

 

01:30

I became like, well, as a kid because my parents both are in the film industry. So yeah, so it's a whole big family thing. Oh, wow. So what did your parents do in the film industry here? Was it here? Yeah, yeah, yeah. Well, originally my mom was from London, so they costumed theater, right, make costumes for theater, originally. And then she transitioned to like costumes for film.

 

02:01

And my dad does props, same as my brother. So they build me props, like guards knives, et cetera. So. That is, so your brother does props as well. Yeah. That's really, you're right. That really is a family affair. Is it just you and your brother? I have a few more brothers, but they don't do the same thing as me and my brother. So you have a few more brothers. How many kids are in your family?

 

02:30

Um, so there's me, Jack, Eden, and Lee Baxter, about four of us. Cool. So, yeah, to their families, but yeah. But that's interesting that you're all involved in that. That must make it fairly easy for your mom and dad. Did they work together? I don't know if they're retired now, but do they work together on films and stuff? They used to, together. Yeah.

 

02:57

uh... the laughing but that did was got to know and now my mom is a off-duty so she is trained to do fifty without all our while is in the end uh... is that for physical disabilities or any sort of range of disabilities well it's what you would just a few non-disabled

 

03:25

I presume. Oh in July, oh wow, still working on it, that's amazing. Yeah, yeah. So anyway, we got distracted talking about your parents there, let's talk about you again. So you've grown up with cerebral palsy your entire life, how was that for you? At first it was tricky because people didn't understand me and even though the cerebral palsy is fixed in speech and physical

 

03:55

this phase. So, yeah, I did go to speech therapy for that. And also, thanks to my mom again, she got me a game called Rock Band. I think you've heard about it before. Oh, of course. Yeah. Yeah. So, the doctor said, oh, you're not going to be able to play guitar or do anything with your back hands. So I started playing like...

 

04:23

locked down to my left hand, like, it's okay, not doing anything big, but then over time, it was from like stuck in this one position to I can actually play notes.

 

04:37

Mm-hmm. Well, of course you can play notes. I've got video of you playing in a bass guitar. We'll get more into that a little bit later. Yeah, and so your musical aspirations started on rock band. That's kind of cool. Yeah, I think people nowadays ask, what is rock band? It's a 2000's thing.

 

05:01

That was before, that was after my time I'm afraid. You see, one of the reasons I wanted to talk to you, because I myself, I'm a musician, I've been playing drums for 40 years, maybe even longer, I'm not even sure.

 

05:14

And so you and I definitely have that connection. And so, okay, so you fast forward from rock band, did you, before going to university or anything else, did you transition into an actual instrument? And I don't mean to offend people who use rock band, but it is not an instrument. So I first started on guitar. So I was guitared and halfway in my...

 

05:44

say halfway in high school I transitioned to bass because I went to Sarah McLachlan School of Music. Oh yeah wow. Yeah so that helped train like local Eastman artists like myself to get more trained in the arts. So what was it like going to the Sarah McLachlan School of Music?

 

06:14

amazing is a meeting connections and people know each other is you all from the east side and how big of a school is that i'm not even sure about that uh... they get the football field though it is a very every hopefully have to speak three hours a year

 

06:37

What is the thrust of that school? I mean you were taking guitars so do they just offer a whole bunch of different musicians? Do they offer composition? Like what's the kind of thing? They do like vocals, they do drums, there's drums out there. Singing, songwriting, bass, etc.

 

06:59

and DJing too if you want to be a DJ. DJ. That's for another conversation. And so from there you went to Capilano University? Yeah. I literally went there 2016, so that's three COVID years and

 

07:24

I was the only guy with cerebral palsy in the group, so it was like, it's kind of like awkward moments, so, so, what do you have, like, what's your story? I said, okay, here's my whole backstory to my classmates. They said, oh, you have some, excuse my language for you, you have some really dark shit.

 

07:48

So in terms of going to either Sarah McLachlan school or even Capilani University again, going to these schools as a person with a disability, how did you feel like inclusion was? How did you feel? Did you feel accepted? Yes, Sarah McLachlan is going to do that one first.

 

08:16

And for me, because usually with a guitar, you have to use all your fingers, like, oh yeah, left hand or your right hand. But for me, I only can use three fingers. Okay. So I'm like my own unique style of playing. And that shows some extreme adaptation. Like, that wouldn't be an easy thing to do for anybody. No. No. No. Even for you, who's a drummer. Oh, it's impossible for me as a drummer.

 

08:46

I have never picked up a guitar really in my life but And and so so you got through that that transition working with with three working fingers And how did that change your approach to the guitar and songwriting or just playing? For me so if you give me a music sheet I won't even cannot read music sheets. I just like make things

 

09:14

like as any artist, they make art from anywhere. So if you gave me MC Sheets, I would be like, I can't read this, but I make lyrics, that's what I do mostly. Yeah. Yeah, that is a good bunch of my years doing music.

 

09:42

then for Cap U, I want to like follow my footsteps in my family. But I know being kind of a disability is a tricky thing in the film industry. So. Now you, now you went to Capilano University for film, correct? Yeah, for film, then I transitioned to documentary after like halfway points because

 

10:13

I failed, not failed, I didn't graduate from motion picture. But they asked me if they wanted to do documentary. I said, yeah, so I went for it every year. So I graduated from that. And so you finished, you've got your degree and everything like that? I got a certificate. Oh, okay, okay. Saying I'm a documentary filmmaker.

 

10:41

Oh, I gotcha. Gotcha, okay. And I was gonna, you know, one of my questions is, you know, what got you into film? Well, your parents, probably. Yeah. So, that's... Yeah. And so, are you able to sort of, obviously you're passionate about music because we can even, we're gonna jump a little bit more into that. Yeah, of course. So how do you, these are two passions of yours, filmmaking and music writing. Do you bridge those two or do you keep them separate?

 

11:11

Like right now, I own a project. It's for people with disabilities. It's about artists who have disabilities and do art. And I asked some possibilities to do directing. And I said, do you want me to do some music? Just maybe in the background? And they said, yeah, yeah, that would be awesome. So...

 

11:38

I'm making some music for them and directing their project. Oh nice. Yeah. Still don't have a working title yet but... And that's for doing some background music on some... Was that a documentary or something? Yeah, documentary. Yeah. Okay. Yeah. And so, Till, like, the band Lakewood Grey, can you tell me a little bit about that? So...

 

12:06

During COVID, everyone was super isolated and they were bored out of their minds. Yup. I started playing music like, not every day, just like every few days. And then I called out some of my old high school mates from back in the day, and they were like, hey, do you want to make a band? So we made an online band for a few years.

 

12:36

I started writing this song and I like

 

12:41

So it's just me, Andy, and Madeline, and then doing COVID, this is so risky, but you make a music video during COVID, that was the weirdest time. It was outside, so I think it was a bit safer. Or most of it was, I think. Yeah, yeah.

 

12:59

Now just for those listening, you can see this video they made with the band Liquid Grants on his YouTube channel. Again, that's Red Fighter Productions 96. That would be the search term. And so you've created this band during COVID and you've got this one song. Is there more music we're waiting for?

 

13:29

her own soul, art, you know, so it's hard to keep track of those two. I want to do more, it's just so hard to get hold of those at times. Oh, I feel that pain when it comes to putting bands together and keeping things together and keeping the music flowing. It's not an easy thing to do. So Lakewood Grey, is there a meaning in that name? So Lakewood...

 

13:54

It's a street name nearby my house. So, and gray is the English term for gray, so. So, gray means gray. Yeah, yeah, so people who aren't educated about, like, G-R-E-Y, gray, is the English way, but the American way is with the A in it. Right. I gotcha. Yes. So we're trying to have, like, kind of a folky...

 

14:23

kind of English style of playing, but yeah. Now did you write the song? Yeah, I did. Me and I guess I'm kind of mad at her because she's awesome at writing music notes and I'm good at writing lyrics. Nice, oh, so you wrote all the lyrics to the song. And what's it about? Let's go deep. So, you know, like, everyone doing COVID time, they like social distancing,

 

14:53

and can't see each other. I've thought about that, like, I want to see that person. How does it feel to be that far away from the person you can't see? I guess you as a person who's stuck in a house too or apartment, how does it feel when you want to see a friend or a family member?

 

15:18

It's kind of, yeah, that's the basic story of that person. Of persons who want... Yeah, that's basically the story. And I should mention that the song is called Mirror, right? Yeah. Okay. Yeah, and the music video is so great. There was a great team who helped me film this.

 

15:45

So where did you record the music? So... It was mostly on our computers. Okay. It wasn't like a professional setting. Well, it sounds pretty good. It sounds pretty cool to me, and I've been in music for a long time, so... Yeah, and um... It's like... Okay... Let's record it on our computers. I was there...

 

16:12

sketchy about it first because I'm like, uh, I'm gonna sound like, very bad, because sometimes audio doesn't sound good on computers. No, no, definitely not. It's nice to have big padded rooms and lots of natural reverb, right? Yeah, but it's amazing how it turned out, just from our computers. We're just like three different places.

 

16:41

Which I think is amazing. It's like, you know, I've been in, like I said, I've been in music for a long time. I've, you know, was making music and recording in studios before the advent of the real sort of digital home studio started making its way into things. And there's so much you can do just on your own. I mean, look, we're doing this podcast on this machine that fits into the palm of my hand, you know? And some of them can even do it on your phone. So it's amazing that we can even produce kind of the things we do with.

 

17:09

with what seems like limited resources, but they're not. You can actually produce something quite good. Yeah. And so that goes into my next question. You're a lyric writer. So where do you find your inspiration on topics to write about? It could be, for example, I wrote a song. It's not officially like, like,

 

17:37

In the works, it's just like when I have emotions sometimes, I just write lyrics down. Like, I was talking about pain because I was in that moment that I felt pain. Like, didn't things happen to me sometimes? Sure. You're a human being. Yeah. We're all human beings. Do you, I mean...

 

18:04

Do you use the music as part of your advocacy work or does that not play into it so much? That's a good question. Music comes and goes when people are naming me like for what

 

18:33

And I can tell it's a part of your life too. Mm-hmm. Um, it's like when you just pick up a guitar or pick up a drumstick, you're like, it's a part of you. You can't escape it. I know that feeling well. Exactly. Mm-hmm. Now, sorry, keep going.

 

18:54

No, you go first. Well, I was gonna go back into the video. It's actually kind of a nice self-produced work. Did you have to spend a lot of money on it? Did you direct it as well? I directed it. Yes, I did. Produced it, and I worked on it, and directed it. And what did you shoot it on?

 

19:24

It was like per second, like how much frames per second. Yeah. And we said that I changed it to 4K, so it was much more crispier. For camera wise, it was like my friend's camera. I don't know what type of camera it was at the time, because I was like, oh, here's all the nice equipment. Let's use his equipment. Yeah. When in doubt, use someone else's equipment in case it breaks. Yeah. And so did you edit it as well?

 

19:54

To be fair, I'm terrible at editing. I just hire one of my friends to do it. Yeah, that always helps too, right? I'm not a great editor either, but I try. And that was all done basically for free? You didn't have to spend any money on it? Nope, not a penny. I basically paid everyone for videos and...

 

20:23

Pizza. Beer and pizza is a good motivator. Yeah. OK, so I want to head back into film. You made a short documentary called Don't Dis My Disability. Why did you make that? To be honest, I feel like people with disabilities don't get that much attention in the workforce.

 

20:52

Yeah, we know that. Yeah, and usually they're like, oh, they're like, maybe in the corner, just like, oh yeah, I didn't know that person has like autism or psoriasis or et cetera. But I feel they need to have a voice to be honest.

 

21:12

When you watch this film, how do you feel about that? How do I, are you asking me how I feel about it? Yeah, well, you watch this. Well, yeah, it's like you feel like these people want to be heard and seen and taken seriously. You know, because you're you the people you use in that film are they're not just physical disabilities, like someone with cerebral palsy might experience, but people with with developmental disabilities as well.

 

21:41

You know, and it's a nice little piece that really gets the point across. Now, for those who don't know, Don't Dis My Disability was showcased at the 2020 Beyond the Curve International Film Festival in Paris, where it was listed as a finalist in the best documentary category. So how did that make you feel? I mean, it doesn't sound like you won the award, but even being nominated for something like that seems pretty cool.

 

22:09

I was by chance, so basically I had $100 as a budget. And I put my film in a couple different festivals. And after that one, after the first one, I started getting tons of attention. People were asking questions about the documentary.

 

22:37

Why choose four people and not two? I'm like, well, I think you have multiple personalities and multiple different views, right? Yeah, of course, and why wouldn't you? I mean, for me, it seems like you could even make a longer form of that to really get that across. But why did you choose a Paris film festival? So, as I said, my mom is from England.

 

23:07

I like Yoruba a lot, so I just like, put Paris, because I like, I just want to see if they're going to the Ikemona, so, they like it. Yeah. I just like, I thought it was something in Ireland, England, Paris, yeah, like a couple of different places. Nice. And, and, and so when you got the nomination for that...

 

23:36

How did you feel about that? I was surprised to be honest. Like, so many from Canada and like Paris, I was like, oh, they just go like pass off, see there's nothing like just a okay film, but no. Like, being a finalist is like a big thing. Yeah.

 

23:57

Absolutely it is. I don't know if you're aware, because I know your friends with David are film-makers. Have you seen the documentary he put together for DDA, Doing the Impossible, the story of the Developmental Disabilities Association? He told me about it over coffee one time. Yeah, and it won three Leo Awards last year, BC Leo Awards, and was nominated for a...

 

24:21

for a couple of others and nominated at the Yorkton Film Fest, which is pretty big here in Canada. So it's nice to get those recognitions, isn't it? Yeah. Like, I want to like work with, well, I want to work with him again to work on a other project, I think, about... Now like on the bigger picture, do you think Hollywood is getting better at representing people with disabilities, since we're talking about film?

 

24:48

Um, slowly and surely, yes. Like, it took years for people like, in Hollywood to represent people of color too, right? Like, Asians, blacks, so on and so on and so on. But also, I see there's some improvements, but it needs more time, I think. Mm-hmm. Needs more representation, do you think? Yeah. It's, they don't see us like, oh...

 

25:17

He's just a background actor or something. I said, oh, he can do more than just be a background actor. Yeah, you get the little token rolls, right? And that's what you want to see less of and more actual parts. How do you feel about that? How do I feel about that? Yeah, I think representation is very, very important.

 

25:38

When you know we're talking about inclusion and acceptance, I mean, Hollywood and media in general is supposed to be a reflection of society, right? And where, like in the latest stats reports from Stats Canada, 27% of people in Canada identify with having a disability. Whereas we're still, in terms of representation in Hollywood, I think it's somewhere below 3%. 3%? I don't know. So there seems, I'm sort of pulling that number out of the air, something I've read fairly

 

26:08

But at the end of the day, media still isn't really a big reflection of what's going on in the world. So maybe there's room for improvement. About 24% room for improvement. Yeah, like, how about somewhere like, um... Back in the 1800s, just like, in the 18th century, like, they used to put people like me and people with disabilities in albums.

 

26:37

They thought we were like, uh, we're cursed or possessed by the devil or something like that. Mm-hmm. They just thought then they didn't understand what our disability was. Exactly, yeah. Or just didn't have the supports or means to, to, to offer people a life outside of an asylum or some sort of thing. Yeah. But now I think...

 

27:05

society is still learning about like, disabilities in general. Yeah, I mean, you know, you live as someone with cerebral palsy and and who identifies with that disability and the big question is, are we doing better? Is Canada doing better? Is BC doing better? How are we doing in terms of acceptance? I know the price of the price of Canada, but I say, I think we get in there because

 

27:35

People in parliament are recognizing that all people with disabilities should be there to help people. And not just put them on sidelines like 20 years ago, 30 years ago. They should be recognized for their treatments. Absolutely. And the difference between, you know,

 

28:05

not doing anything and being successful, and being successful, I mean like contributing to society like a typically developed person, is simply a matter of having the right supports in place. Yes, of course. It's the same with anyone in communities. They're like, oh yeah, we're gonna have this one person and have the next person, have the next person, but it's not that easy. Each person is different. So how important is it for you to be doing this advocacy work?

 

28:36

It's important, like, it's important since day one I was born because I was born with a disability. That's, like, it's not easy, but, like, everyone is born differently and disability is a part of who I am. A part of my, like, a part of me. Mm-hmm. Mm-hmm. Exactly. And what can DDA be doing better to help the disability community to be accepted and represented?

 

29:06

Uh... that's a good question. I think there should have people off set, me and who's the filmmaker, but have people like who can clearly speak for themselves and show what DJ can do in their own community.

 

29:31

and podcasts interview musicians and filmmakers who are advocates. Yeah, yeah. Yeah. One day I will actually like to like sit down and chat about stuff with you. Well, this, this, this is one of many podcasts we can do. I'm sure I'm certainly open to that. Yeah. We can sit down and.

 

29:57

hash out some different angles of things. I think today was just a nice way to get to know you and understand what you're doing and what you're bringing to the community. And it's been great having you. Yeah, thanks. And also, I'm also currently writing a script for a film that's down the pipeline, but hopefully I can get it done before August, September-ish, because...

 

30:27

It's a fantasy project. Oh, nice. Yeah. So that's a screenplay you're working on. Is that for a feature-length movie? A miniseries. Miniseries, cool. Yeah. Then you get to go through pitching that with everybody. And that's another long process. Yeah. Well, I'm really good to get people convincing.

 

30:51

Oh yeah, good, good, good. So in terms of a fantasy series, what kind of like are we talking about, Game of Thrones type thing? Uh, it's gonna be like dark fantasy, uh, basically my picture is like, what if we didn't have technology that can find our family history, right? Mm-hmm. It'd be good to like actually find your family history in the books and stuff like that, right, the old days, before we had that stuff.

 

31:21

So I just wanted to see that angle, how people back then had to find about themselves. Sounds interesting. Keep a roll for me. I don't act, but it'd be fun. Yeah, I think it's interesting, people with dyspnea or dyspnea in general, I'm not really...

 

31:50

with and down their history that much. Mm-hmm. So this fantasy thing would be targeted and around disabilities as well? That's a good question. It's not targeted for today, it's just like, the whole theme is history and family. So you don't know who has it this way back then or.

 

32:19

I'm basically writing my own book, but I don't know what story I'm going to tell. A mini-series, that's a lot of writing. So that's just a matter of sitting down and getting on your computer and getting it done. I applaud you for that effort because that's not an easy thing to do. No, it's not. I get people interested to come from boards and be saying, yes, we want to do this.

 

32:46

I love having this chat with you. No, this has been great. You have been listening to DDA's Encouraging Abilities podcast. My guest today has been disability advocate, musician, filmmaker, and now screenwriter, Elliot Headley. Elliot, it's been a pleasure having you on today. Hey, you too. Have a good day. I'm your host, DDA Communications Manager, Evan Kelly. Thanks for listening.

It's one thing to have a disability and feel left out, it's another to be part of a marginalized group as well. We chat with Rabia Khedr, founder of Race and Disability Canada in this Encouraging Abilities podcast.

 

TRANSCRIPT

 

Standing at the Intersection of Race and Disability is Rabia Khedr

 

00:06

Welcome once again to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Now today we're talking about one thing that is actually two things.

 

00:16

In this world, unfortunately, we see a lot of discrimination. It can happen to any marginalized group, such as people DDA advocates for, and those are people with developmental disabilities. In our podcast, we also talk about accessibility and disability of all kinds. Now, people with developmental disabilities are more likely to be bullied, they're less likely to finish school, and less likely to hold down a job, even though many are perfectly capable of doing so. Now, another form of discrimination we see around the world is the one that's based on race.

 

00:46

Now, what if those two became entwined? Well then you have a potential for intersection of problems when it comes to acceptance and accessibility. Joining me today to discuss the intersection of race and disability is Rabia Kheder from newly formed organization Race and Disability Canada. Rabia is dedicated to equity and justice for persons with disabilities, women, and diverse communities.

 

01:11

They most recently served as board member of Accessibility Standards Canada and the Minister's Disability Advisory Group and previously served as a commissioner for the Ontario Human Rights Commission. She is the National Director of Disability Without Poverty and CEO of Dean Support Services. A founder

 

01:31

of Race and Disability Canada. She is also a board member of the Muslim Council of Peel, in Ontario of course, and a board member of the Federation of Muslim Women.

 

01:42

Rabia has received numerous awards for humanitarian services, including a Queen Elizabeth II Diamond Jubilee Medal. She holds a Bachelor's of Arts from the University of Toronto and a Master's of Arts, and she is also legally blind. So Rabia, thank you very much for joining me today. Thank you so much, Evan, for having me. And perfect pronunciation of my name. Thank you. Nailed it. That's good. Pardon me. Now.

 

02:08

Let's, right off the bat, you founded Race and Disability Canada. How did you get this off the ground? Well, I've been doing this work for years, almost 30 years. So my initial, you know, grassroots advocacy came out of an organization called Ethnoracial People with Disabilities Coalition of Ontario. And we were talking about the layers of barriers that people with disabilities face when it comes to race, faith, culture, gender.

 

02:38

age coupled with disability. And we didn't use the word intersectionality because we were really grassroots. We weren't running around in academia having these conversations. And fast forward, continuing that work, I discovered that there were huge gaps. And as somebody with lived experience, I'm blind. I grew up with siblings with intellectual or developmental disabilities for whom I was an advocate.

 

03:05

and or even substitute decision maker in different contexts. I recognized the exclusion. I lived the exclusion in many ways when accessing supports and services. And there were many other groups that popped up with similar needs through the Tamil community, South Asian community, at large, Asian communities, racialized peoples. And...

 

03:33

When I participated in federal space at the beginning of this century, you know, the 2000s, I discovered that our national conversation looked very white. There wasn't a lot of diversity from an intersectionality perspective, visibly present in the national disability landscape. And I stepped back and I focused local because I didn't belong there.

 

04:03

Fast forward a few years later, I went back, I did a master's degree, I founded Dean Support Services, and I went back to engage nationally. When I went back to engage nationally in 2017, I realized that again, nothing's changed. We still look the same.

 

04:33

culture still monopolizes the conversation on disability and disability policy in this country. So I came back and I said this isn't good enough. I reached out to my friends in other organizations and I said we need to form Race and Disability Canada to specifically talk about this intersection that makes us very visible.

 

05:01

coupled with our disability and poses all sorts of obstacles and barriers in our full participation in society. And that is equally true for folks with intellectual or developmental disabilities. Yes, absolutely true. So when you want to say how do you get it off the ground, how many people have been involved in this? And I know you're largely funded by the government of Canada, correct? Well, we did manage to secure a grant.

 

05:31

last year and yes, the work that we're doing right now is federally funded, which is really great. They have taken on some of the equity language and conversations that I've been having serving on the ministers advisory group and serving on accessibility standards Canada initially. It's really refreshing that they are looking at disability from an intersectional lens, particularly looking at that intersection of...

 

06:00

equity issues around race. And so we did some work initially at the grassroots level. We continued to talk about this issue wherever we could voluntarily or in other work. But really being able to mobilize resources and do real solid work hasn't happened until the federal government stepped in with its grant.

 

06:29

Right, I mean anything like this on a grassroots level is, it's got to be tough to do. It's got to be tough to find people to back it and it takes money to do something like this. It definitely takes money, especially when disabled people are leading the work themselves. We are the experts and it's important that we have the supports we need to leverage our expertise to bring the change that we need.

 

06:56

In terms of working with the government, have you been able to change some of the language within policy? What sort of effect have you been able to have so far? Well, like I said, they actually have put in their calls for proposals, applications for funding. They've recognized that there needs to be work done on equity and intersectionality. So, for example, at Dean Support Services,

 

07:24

just secured a grant specifically looking at equity and people with disabilities and knowledge mobilization. So this is another project that we will be getting off the ground, creating tools and resources and building capacity of the disability sector in Canada to appreciate, understand and respond more effectively.

 

07:53

to the lived realities of diverse communities of people with disabilities that have called Canada home. What is the IDEA project? And how does that relate to race and disability Canada? Well the IDEA project is essentially IDEA's the acronym, Inclusion, Diversity, Equity and Accessibility. So it's really to bring together research.

 

08:22

to better educate and inform disability organizations, employers, and society at large, how to better address the needs of people with disabilities who are racialized, who represent equity seeking groups.

 

08:52

needing accessibility, needing accommodation, but to look at the whole person who needs to belong, whether they are accessing employment opportunities or other opportunities within our society. And how are you reaching out to these groups and what sort of support and reaction have you been getting? So we are creating tools and resources, we are holding

 

09:21

focus groups, we are making presentations. So we're really bringing together the information and the needs out there to be able to appropriately respond. And you're doing podcasts. Yes we are. And what about Diversity Works? Is that separate from all of this?

 

09:47

That's totally separate. That's me, you know, in 2000, end of 2001 saying, I am quitting my full-time job because, you know, I worked for an employment service providing supports for people with disabilities and accommodation and access to employment. And I, you know, found myself in a situation where a colleague of mine was dismissed, who has passed since then, who had a disability.

 

10:14

And I was like, whoa, if we cannot retain a disabled person in an agency providing services to disabled people to find jobs, something's wrong here. I can't deal with this anymore. So I needed to, you know, balance my philosophy and my work with my family life. And I walked and decided to open my own consulting company so that I can do the work that has impact. And is that, I mean, outside of Race and Disability Canada

 

10:44

is the consulting company that's still your sort of bread and butter type thing? No, no, it's just a side hustle that sits on the back burner. And once in a while, somebody invites me to be a keynote speaker or something like that. I'm really not taking on large projects. It's more about speaking gigs. But my real work is disability without poverty right now. Right. That's right. You're quite, quite heavily involved with that.

 

11:12

And you talk about the employment and disability, it's, you know, that's a big thing for DDA as well. The thing I didn't mention is we operate another side of us, which is called Jobs West. And we work with clients and employers alike to get people working. And we employ about 100 people every year. So it's quite a successful thing. And it's something that we really got to focus on because, you know, I just pulled a few stats.

 

11:38

about the visible minority population with a disability in Canada. I'm sure you're probably quite aware of this. And it's visible minorities with a disability in Canada, both men and women, are around 14 to 15%. So that's a lot of people. That's a lot of people that are able to work and just need the supports to get going. Absolutely. And there needs to be a recognition that they face.

 

12:05

further discrimination, not just on the basis of their disability. And it's the one thing that I think businesses need to sort of recognize as well, because the buying power of the disability community is in the billions. So if we have these people working, they're going to be spending just like everybody else. Absolutely. So, let's go. You have a catchphrase, I don't waste time seeing a spend time doing. I love that.

 

12:33

What has your experience been like growing up in Canada as a person with blindness? I know you got here when you were, I think, about four years old, correct? So you essentially grew up here. That's what you know. Well, absolutely. This is what I know. This is home. And growing up as a brown kid in, you know, a mainly brown Muslim kid, actually, in a mainly Catholic neighborhood where the only two colored families were Catholic.

 

13:03

was challenging, to say the least. Being a family of four children with disabilities, we faced, not only did we face exclusion in the mainstream, but we faced exclusion within our own cultural communities. We faced exclusion within our cultural communities, in our places of worship. And that's the lived experience that drives my work.

 

13:33

And when I say I don't waste time seeing, I spend time doing. You know, as years went by, my vision, uh, got more limited. And by the time I was in my mid thirties, I basically started to say, yeah, I'm blind, it's no longer quote unquote visually impaired and I never liked visually impaired language to begin with. And you know, I, I just found it easier not to focus on, you know, the visual cues and just.

 

14:01

do what needs to be done, so speak truth to power and shake up things and make the change that I want to see. Now in terms of your own blindness, that happened a bit later in life, so did you finish your education before that started happening? No, no, I have an eye condition from birth, so I never saw it perfectly. So I was, I was quote unquote legally blind all my life. But functionally, completely, like more or less.

 

14:31

not having much functional vision came later. So I went through the school system. I faced exclusion again in many different ways given my identity of my faith, my color, my gender, my disability that people didn't understand. But I muddled through school, I made it, I went on to university. When I went back to do my masters at that point, I was quote unquote blind, totally blind.

 

15:00

more or less. Now, growing up, what kind of support did you get for, I mean, I know we're talking about intersectionality and all that stuff, but in terms of your vision, what kind of support do you get in this country? And like, do you have any sense of what that's like compared to other countries? Evan, initially, I was mislabeled and misplaced because, you know, the school, I went into the school.

 

15:23

And you know, there's a longer back story to this, so I don't know how much you wanna know, but you know, I sat at home for four years in this country when I arrived. I didn't go to school until age eight. No one ever asked my parents, is she in school? You know, I went to the best eye clinic at the best hospital in this country. I was a textbook case for them, but they never asked, is she in school? And that makes me wonder, you know, is it because we were a brown family? It never occurred to them.

 

15:53

When I went to school, I was mislabeled and misplaced. The school psychologist assessed me and put me in a general learning disability class, not recognizing that it's not, that I wasn't doing well on his little testing because I couldn't see the stuff. He thought I couldn't process the stuff. That's just, Yeah. So it took a few years for teachers to figure it out and bring in CNIB to do an assessment. And then they had to label me legally blind. And

 

16:22

you know, as an exceptional student, whatever the heck that means. And then eventually I started to get, you know, a nice crisp copies of things in larger print. Slowly as technology evolved, I started to get, you know, a closed circuit TV. I started to get audio books. I had some maybe, you know, volunteer support. One of the best skills though that school ever taught me.

 

16:46

was typing, you know, when we had typewriters. Mm-hmm, I do. So, you know, so my fingers, you know, my ten fingers fly on a laptop. I have no issues. Just give me a keyboard anywhere, man, and I can do my work. And technology is phenomenal today. Today, like, you know, to kind of quote Charles Dickens, you know, it's really badly.

 

17:08

It's the best of times to be disabled today. I modified the quote, obviously. Well, in anything from like, I mean, here at DDA, our clients like to use a lot of iPads. There's a lot of interactive stuff they can do there. And what's becoming really popular is the virtual reality stuff. You know, like the, what are they called? Meta, the, anyway. So they're able to like put that on and like go to different places in the world.

 

17:38

without leaving if they can't, if that becomes really, really difficult. Oh, absolutely. Yeah. The experiences through technology are tremendous. For me, as somebody who's blind, there's so much access to information today that I never had before. Most of my life skills work through my technology. Banking I do independently.

 

18:02

you know, my recipes are online, I can search them up and you know, just just technology is phenomenal. My instant pot for cooking, you know, like all these things, you know, are are day are impact my daily quality of life. Huge. Yeah, you need to get a thermo mix. If you're talking kitchen. Okay, phenomenal.

 

18:27

uh... but yeah it's uh... you know i have not done a couple of other interviews with uh... one of the heads of the rick hansen foundation out here and uh... but but at the same time you know adaptive tech gets limited at this in the same breath because you know he's he's in a wheelchair from an accident uh... when he was twenty seven and his wheelchair cost thirty eight thousand dollars oh yes and that's not all covered you might get something from the government

 

18:56

but you're largely on your own buying a car essentially. And that Evan is privileged in this country. For many people around the world, a basic wheelchair is out of reach. Yeah, exactly. And they literally physically crawl from point A to point B. So we have a lot of things to be very grateful for, but even here, you know, for the average person with a disability,

 

19:22

You know, it's even a low tech repair on a wheelchair is not affordable. Yeah, yeah, it's on it's on that, you know, that kind of blew my mind that, you know, that's one thing that people pardon me, sort of don't understand is like when it comes to just being able to afford to live. And we you know, we're hoping that this new CCB benefit is good. And there's no clawbacks and stuff like that, just to help raise people's quality of life that, you know, it's expensive.

 

19:52

to be disabled. Absolutely. There is an added cost to living with a disability and people with disabilities who live in poverty currently, it's one in four people at least with a disability live in poverty today. So we are looking at deeper and deeper poverty and harder and harder to thrive. And it just compounds the barriers that they already face because of their disability. Yeah.

 

20:21

The irony is there are so many people in this country that identify as having a disability. 27% now. 27%. And if they, you know, we have so much to offer if we are given the support that we need. I am succeeding in my work because I have the supports that I need to do my work.

 

20:50

If I don't have those supports, I cannot work and I cannot earn. If people with disabilities don't have sufficient income to pay their rent, have food, have access to transportation, have basic medication that they might need or a repair that they might need to their assistive device or mobility aid, they cannot get out the door to even think about working.

 

21:19

or volunteering. But if we give them that safety and security of the Canada Disability Benefit that brings them to the poverty line, then they can get things going to be able to consider possibilities. What can they do? What is possible for them? There's endless possibilities of contributions that disabled people can make.

 

21:47

to their family, community, and society. We just have to have the right supports in place. Yeah, exactly. I want to track back to the education, your experiences being in schools in Canada. Now, you have kids, correct? Did I read that correctly? Yes, I do. I have four adult kids. Four? Yes. I have two. That's too many. No, it's not. Somebody has to contribute to the tax base, okay? That's true. We need people. That is true.

 

22:17

Now, have you seen, like, through their eyes, through their experiences, have you seen stuff like this improve in terms of marginalizations? Well, I live in Mississauga, which is pretty diverse. So things have changed for them. For example, you know, when I grew up, the demographics weren't here. Like the halal food wasn't here, man. I had to settle from vegetarian everywhere I went.

 

22:44

you know, Muslims are meat lovers. Yeah, halal food just opened near my house, actually. Yeah, and now, you know, in Mississauga, like, it's everywhere. And, you know, anywhere in this country, you can always find something halal somewhere. So that's a huge difference, and it contributes to belonging. Food is a bridge builder. Absolutely. You break bread, you belong together, right? I started to wear hijab when I graduated university.

 

23:14

My girls chose to wear a hijab as Muslim girls in grade school for God's sake. Things definitely changed. My kids don't belong anywhere but here because their parents come from two different parts of the world. So this is absolute home for them. However, today what's concerning to me is the fact that

 

23:42

things are going backwards as a society with Islamophobia on the rise, with global issues having such local impact on our social fabric. I'm deeply, deeply concerned about our youth and their future. You also mentioned something, since COVID-19 you feel that there needs to be a new normal for people with disabilities. What does that mean? Well, you know...

 

24:09

The system keeps talking about building back better. And I'm like, no, no, no, back was not better buddies. We need to build forward better. You know, we need to learn from the exclusion that able-bodied people start to feel during COVID and the provision that they put in place to have accessibility, right? So when COVID hit, we locked down.

 

24:37

we flowed money like rapid fire to able bodied people so they could have their basic needs met. Right. For the most part. Well, they kept the liquor stores open, right? Oh well, whatever. Yeah, exactly. Like those privileges that able bodied folks wanted, they insured were available to them. And you know, things that people with disabilities had advocated for to be accommodated.

 

25:06

such as work at home became a new norm for able-bodied people. And that was a giant step. Now we're starting to build back better, so-called, which means we're going backwards, in my opinion, telling people you have to come in to work. Whereas for disabled people, they are more productive if they are accommodated. And if that accommodation means work at home, you don't have to take

 

25:36

two hours in the morning at the mercy of service providers to get ready, a pair of transit services to come and take you to work, and the snow to be shoveled and blah, blah, blah that adds like, you know, four extra hours of work to your eight hour workday and exacerbates your disability experience. When you can be, you know, twice as productive sitting at home in those eight hours. I think it's, you know,

 

26:05

Like the return on investment of letting somebody work at home is far more than bringing them into the office. Yeah, absolutely. Yeah, absolutely. Now we sort of touched a little bit on health. In terms of the intersection between race and disability, I know the First Nations people out, the Indigenous people out here, often say that their access to medical health is not as good.

 

26:34

So where does, where does the, in your experience, does, where does that fall? Where does the, the intersection of race and disability and how is that doing in terms of our medical system with your experience? Again, our healthcare is tailored traditionally to, you know, healthy, white able-bodied men. We've fought hard to make sure that.

 

27:01

health care is responsive to the needs of women, recognizing that a lot of our, you know, again, medical models are based on colonial practice. Those practices are built to exclude racialized communities and they don't respond effectively to the needs, diverse needs of racialized communities who have different ways of knowing and peeing.

 

27:31

given their cultural experiences, their transnational experiences, their migration journeys. You know, when we talk about health and healthcare, for example, again, let's just, you know, use food for argument's sake. We have different food routines and habits and preferences, and those contribute to our health outcomes. And if the system...

 

27:59

doesn't recognize what those are, then we don't have equal access to health care. Mm-hmm. And cultural beliefs, I think, would play into that quite a bit as well. Absolutely. Absolutely. And historical abuses, you know, when we've experimented on people who are black, for example, and hence the fear of immunization.

 

28:28

And that's just, you know, you just mentioned like there's a historical and cultural factors that have shaped the relationship between race and disability. And, you know, how do they continue to influence contemporary attitudes and policies? Well, it means making space, investing in getting people to the table, not just, you know, expecting us to come, but deliberately reach out to invite us in.

 

28:57

and invite us in as equal partners, not as just token volunteers at the table. You know, I've volunteered for years, and in principle, I continue to volunteer, but today I will say, you know, I can afford to volunteer. But I would like to see other racialized people at the table who cannot afford to volunteer be compensated for their expertise at the table.

 

29:25

when everybody else around the table has a paid job to be there, to engage in systems change and policy change. Do you think attitudes are still prevalent that, you know, because you're a person of color and disabled, you're going to do, your work isn't going to be as good?

 

29:48

there's always assumptions and presumptions and discrimination.

 

29:55

And is it, I mean, are we doing better? Are we on the right trajectory in your mind?

 

30:02

I'm always hopeful. I'm the forever optimist. To me, every obstacle is an opportunity. And the reality is times are tough when it comes to othering people, excluding people, and times are just getting tougher. We have to be very deliberate in ensuring inclusion. In order to ensure inclusion, we have to be very deliberate.

 

30:32

In order to ensure inclusion, we have to be very deliberate and intentional. Otherwise, we will definitely exclude people and leave them behind. Yeah. I'm on social media a lot for work and just as something to do. I see a lot on Twitter in particular that, or sorry, X, people just pushing back against quote unquote this woke culture. And I...

 

31:01

That seems dangerous to me. Like, how do we combat that?

 

31:08

I honestly don't have an answer. I mean, you know, I did a webinar this week and I just said, you know, I'm Rabia and I'm coming from the traditional territories of blah, blah, blah. And today's the first day of Ramadan. So, you know, shout out to anybody who's fasting like me today. And somebody messaged back, you know, just saying, you know, there was no need to bring

 

31:36

identity politics into the space. I'm leaving this group because I, you know, like you use the word woke, right? That was exactly it. And then, but I'm sure it's probably okay if you said Happy Easter. Oh, of course it is.

 

31:54

You know, and that's the, you know, we got to sort of root out these sort of double standards in society and make sure everybody's included and allowed to say whatever they want. Well, I'm just, I'm just hoping that, you know, we're not going to, as times get tougher and, you know, there's always hope. We're hoping for the better. But right now times are tough. Given these tough times, I hope we don't see what's happening south of the border here.

 

32:24

you know, leveraging that despair for political gain through divisive politics. Yeah, and it's, you know, I spend time on X, you know, posting stuff for DDA and things. And it's just, if I was to believe everything on X, it would feel like the United States is such a divided country. And it's just...

 

32:51

cesspool down there. I hope that that's not really the truth and you're just getting a tiny fraction of people's opinions on X, but it's it gets ugly and it's it makes me concerned for people with any sort of issue of marginalization because it's it does not look hopeful on that platform. I got to tell you that. You know skyrocketing housing prices skyrocketing cost of you know, you know rent and

 

33:21

food is really impacting people. And when people face tough times, they fall into the trap of othering. They really fall into that trap. If somebody doesn't look like them, doesn't believe like them, doesn't live like them, they start blamely and discriminating.

 

33:47

and saying, you know, well, they're taking something away from me. And that's a very dangerous space to be in. And unfortunately, when we enter into the tough times, you know, democracy tends to deflect the reality of tough times by, you know, continuing that narrative of othering.

 

34:16

in through divisive politics. And so groups like Race and Disability Canada, groups like DDA, people like yourself, we just gotta keep banging on the door of these attitudes. We can't give up, we have to create opportunity for people to get to know each other, to learn, to share, to care about one another.

 

34:45

and recognize that if 27% of people in this country are disabled, the other 73% are their families and friends. Exactly. And that's 27% today. I mean, it's like...

 

35:02

Myself, I'm fairly able-bodied at the moment. I'm 52 years old. I've, you know, I've got some problems with my eyes and but age is definitely coming and I'm gonna need support at sometime like we all are. You know, so it's accepting that that's everybody is gonna experience this at some point in their life.

 

35:26

So we can't just keep those walls open. So what is the future for Race and Disability Canada? How long have you been around and where do you see this ultimately going? Well, Race and Disability Canada came forward as a concept in 2017. Dean support services evolved out of the Canadian Association of Muslims with Disabilities, which was around since 2004.

 

35:53

So Dean evolved in 2013 and then we brought forward Race and Disability Canada as an initiative of collaboration amongst several organizations that have been around for 20 to 30 years and have been doing work on the ground, but just haven't had capacity to grow. And so today,

 

36:21

as a funded initiative, we've been driving full force since the beginning of 2022, end of 2022, early 2023, and we hope to continue infiltrating the national landscape around disability to really spotlight the intersection of race and disability and encourage the change that we want to see for racialized people with disabilities.

 

36:51

Now you're currently operating on a grant from the federal government. Is that something that's going to be ongoing, do you hope, or is that something you have to reapply for every year? Well, it's a two-year grant. It comes to an end in November. We hope that there is, you know, opportunity for a subsequent phase that they haven't announced yet for another two to three years. And in that process, we hope that we're able to diversify opportunities to continue on.

 

37:21

Anything else to add today, Rabia? Well, like I said, every obstacle is an opportunity. I am the forever optimist. My cup is always half full and overflowing often. Good. So I believe that as Canadians, we have deep-rooted values that we all share of life, liberty, and security of the person, of justice.

 

37:51

of equity, of human rights. We just need to wholeheartedly embrace those values and champion them to build connections amongst each other and recognize that we all belong and that we all have an obligation to ensure truth, reconciliation and disability justice.

 

38:19

here and around the world for all Indigenous peoples and everyone else. We're all in this together. We're all in this together, absolutely.

 

38:32

Well, thank you very much. You have been listening to DDA's Encouraging Abilities podcast. With me today has been Rabia Kheder. She is founder of Race and Disability Canada, a relatively new organization to raise awareness of the intersection of race and disability and the problems and issues that come along with that. You can find more information about who they are and what they're about at racedisability.ca. Rabia, thank you so much for joining me today. It's been a pleasure talking to you. Thank you, Evan.

 

39:01

I'm your host, DBA Communications Manager Evan Kelly. Thanks for listening and see you next time.

 

Community inclusion for people with developmental disabilities is and always will be a driving force for DDA. However, here in 2024, some new players and organizations are emerging to fill the spaces in between to help broaden horizons and cultivate relationships for people of all abilities. Say hello to CURIKO.

 

TRANSCRIPT

 

CURIKO – Filling the Spaces in Between

 

00:07

Welcome back to another episode of DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Doing things a little bit differently today. We normally have one person either in the studio or on the phone, but today we have three guests in the studio, four, including myself. We only have two mics, so we're going to have to be agreeable when it comes to sharing. No fighting. So joining me today are Sarah Knowles, John A and Rodrigo Galvan. They are part of a new digital platform called Curiko.

 

00:37

They're here to talk to us about what Curiko is and why it's here. So all of you, firstly, thanks for making the effort to come out and, you know, make the trip, as it were, it's a lot harder than getting on a phone. So thank you for being here today. Thank you. Thanks so much for inviting us and also for accommodating, you know, allowing it to be three of us. That's kind of how we run with Curiko. We like to.

 

01:04

switch things up and kind of push the bounds a little bit. Exactly. Well, you know, for those of us, for those just listening, that's awfully cozy in our little pod booth here. So it's going to start to get warm, I think. So perhaps maybe just start by telling me a little bit about yourselves. How about you first, Sarah? Yeah. So I'm Sarah, Sarah Kay. And I'm a Cureco team member. I'm what we call a curator.

 

01:33

And all that really means is that I work with all sorts of individuals, organizations, and businesses to share their passions with others. Um, outside of work, I'm just someone who absolutely loves people and really am always happiest when I'm on top of a mountain. On top of a mountain. So you're hiking or like actual climbing? Hiking.

 

01:59

I do indoor bouldering, but haven't actually gone into the outdoor climbing scene yet. And John, how about yourself? Well, I'm not sure. I'm just, I'll just say that I'm getting three words. I'm a Catholic autistic gamer.

 

02:23

Catholic Autistic Gamer. That looks good. And what's your role with Kiriko, John? Just a member. And I guess I'm starting hosting. Oh, that sounds good. We'll get into that in a little bit. And how about yourself, Rodrigo? Hi. Well, yeah. My name is Rodrigo. I'm a Catholic.

 

02:42

What can I say about me? I love exploring. I'm a nomad at heart. I like food. I like cooking. I like trying new things. And I'm, I started as a member and I'm a host. It has been almost a year as a host in Curico.

 

02:59

And we were talking just earlier, you're from Mexico. Yes, I'm from Mexico. See, I said that properly. Yes, in Spanish, Mexico, right. And how long have you been in Canada? Five years, a little bit more than five years. So what brought you here?

 

03:16

I used to be a digital nomad. I travel around the world. I arrived here in Canada at the end of 2017 and I fall in love of the trees the trees that were near the the SkyTrain I was like this amazing. I want to stay here. So you you've given up Sun for rain is what you're saying Yes, but let's put it like this. I prefer cold. I don't like

 

03:42

warm weather, so I'm in the right place. You're an anomaly. You're an anomaly, I'll give you that. Okay, so Sarah, let's just talk about Curiko. What is it, what is it for, how does it work? Yeah, so...

 

03:57

We like to describe Curiko as a community building platform. So we have a website, Curiko.ca, and on this website, you can find tons and tons of different experiences. And these are all sorts of opportunities for anyone. Anyone can go on these, and these are kind of activities or events that can be one-on-one or group, in person or online. And they're just opportunities

 

04:27

to have different types of connection. More moments of connection to themselves, connections to other people, connection to spaces, to ideas, to a sense of, you know, culture. And so really that's what Curiko is, is we're a community building platform. We offer up opportunities for people with and without disabilities to come together and have experiences. So when was this started?

 

04:55

Yeah, so Curiko as Curiko kind of got started at the very end of 2020, very beginning of 2021 was kind of the time. However...

 

05:07

Um, Curiko kind of actually is just the most recent iteration of kind of a 10-year process. A 10-year process of research and development that actually came out of, um, a big kind of partnership between three really big disability-facing organizations, uh, Possibilities, Kinsite, and the Burnaby Association of Community Inclusion. We know them well. Yeah.

 

05:37

maybe something you know a little less well, which is a social design organization called InWiF Forward. So they came together with this social design group and started what is now a 10 plus year process of research and development. You call that InWiF Forward? InWiF Forward. In with? Yeah, InWiF Forward. InWiF Forward, okay. It's a social design organization. And Curacle is kind of one of the now most kind of

 

06:06

developed prototypes that came out of that organization. And so, your website mentioned some research that's been done before this. I'm trying to get a sense of the mission or the goals behind this that means you gotta do all this research. Can you talk to a little bit about that? Yeah, so what happened was these kind of three disability-serving organizations kind of came together.

 

06:36

And they really had this really, really brave kind of question they asked themselves. And that was, in the work that we are doing, are the people we supporting with intellectual disabilities actually living flourishing lives in community? And they answered, maybe no.

 

06:57

And based on that, they kind of reached out and partnered with this, at the time, very small but very exciting social innovation firm. And what they did together is they sought out to kind of therefore investigate.

 

07:16

What is it, how does social isolation for people with adults with intellectual disabilities look like? So based on that overreaching question, a group of people from all four organizations actually went and lived for several months back in 2014 in a social development complex in Burnaby. They lived there and they talked to people. They talked to them.

 

07:46

And not only did they get a sense of how their lives currently were, but they also asked what could they be. And some big things came out of that. Some big things was that social isolation wasn't just a matter of not having people, it was a matter of actually feeling connected to those people and also having a sense of a couple of things. So having a sense of purpose in their lives and also a sense of kind of novelty.

 

08:15

this kind of idea that maybe there wasn't really kind of flourishing lives. So lives that were connected to lots of moments, big and small, of different types of connection. You know, moments of awe and beauty and also purpose. Mm-hm.

 

08:34

And so that that was kind of missing. And so what started was initially something called Kudos. And that was creating opportunities for people with intellectual disabilities to go on experiences hosted by all sorts of individuals and businesses and organizations to just kind of share their passions with people. So these were one-on-one in-person experiences. And that happened for a really long time starting in 2015.

 

09:04

took on a life of its own, got funding. But eventually, with continued ongoing kind of research and listening and evaluation, it reached a point, kind of came to a head right before the pandemic, that, oh, maybe actually some of the existing power structures that led to maybe a sense of not flourishing lives are being replicated now. And so it led to changing again. And that's where kind of Kyrraco came in.

 

09:34

came out, whereas Kiriko now has kind of taken this idea of experiences and opened it up.

 

09:41

So now absolutely anyone can go on a Curiko experience. There is no eligibility requirements. And also anyone can host experiences. So people with and without disabilities both go on experiences and host experiences. And these can be group and one-on-one, in-person and virtual. So it's really open to that. So Rodrigo for instance, not only hosts experiences,

 

10:11

experiences and so does John. Yeah, I want to talk about that shortly as well because it's now did this is obviously an online platform which helps. I mean, let's let's be honest being on the digital world helps people get connected than then just, you know, prior to the year 2000. But did did COVID

 

10:34

sort of make you move faster in this direction. Because that got me that shut everything down shut up. I mean it made people who were lonely even lonelier presumably. But it also kind of required to shut down like kudos was functioning as an in person one on one and it had to stop.

 

10:50

couldn't do that anymore. So in the space of that couldn't happen, it allowed for the ability to try new things. And so in the immediate aftermath, kind of what happened very quickly was something called ComakeDo. Now ComakeDo was a virtual platform which was virtual group experiences. So it was the immediate stop gap. We can no longer do one-on-one experiences in person. How do we still create moments of connection?

 

11:20

And so, Ko-Me-Do happened and that kind of was a stepping stone and it also gave time so that, you know, new things can be tried and Kiriko could be created. But out of that also came an understanding that for some folks, virtual is actually always going to be better and for others it's not. And so, even though we're back to doing lots of in-person stuff, we're never going to abandon

 

11:50

as an option. It's an instant thing, right? I mean, you can set things up and not have to go anywhere, you know? Well, to join virtual group experiences, there's literally no barriers.

 

12:04

You don't actually even need an account. You go on, if you know an experience is about to happen, the times are on there, an hour before, there's a little button that says join waiting room. You click it, you join the Zoom waiting room. That button changes to join experience when it's about to start. You click it, Zoom opens. No need to even make an account. So it's really simple. You've made it really easy to get on board.

 

12:27

At least for, especially for those kind of virtual groups. Now, one-on-ones, even virtual one-on-ones, require an account and they require a bit more of a commitment and finding a time. And we also require you to have an account for in-person, just because we kind of need to know who's gonna be there. Because it really helps the host to kind of know who to expect. And is that free for the user? All Kiriko experiences are free. There are occasionally a few very small exceptions.

 

12:57

to help cover some costs, but for the most part, Curiko is free, free for everyone. So, what do you get your funding? How do you get this thing operating? Yeah, that is the question. That is the big question. So, we get our funding in a couple of different places. So, we have those partners I mentioned before. They are still big kind of funders, and they're still really, really crucial to the day to day, those three disability-facing organizations.

 

13:27

We also get funding directly from CLBC, so Community Living BC. We also get funding from several other organizations, including Frasier Health, but also the Israeli Foundation and some other organizations that kind of change their taste. Oh, interesting. Okay. Yeah. So anybody, I mean, you'd accept donations from anybody who wants to be a part of this kind of thing? Yeah.

 

13:50

Definitely, we would say our one thing is that we're a core part of kind of our values and what makes up is collaboration and kind of, yeah, is collaboration. And so we do kind of make sure that anyone we work with, including funders, shares our values and also that are kind of on board with our power sharing and with the idea of

 

14:20

and making decisions and so that's really important to us and part of also our relationship with our funders. That sounds good. Now let's talk about experiences. Rodrigo, why did you get involved with Curiko?

 

14:36

Okay, it's a little bit of a fun story. I used to be part of a program called Ignite from ISOBC. It helps immigrants develop their business. They offer a webinar of how to incorporate like values to your business. Like it catch my attention and that is where I met Sara and Stephanie. They did an amazing presentation, something like really different from what

 

15:06

to get involved, to know more. They invited me to a small hiking group that was going to go to SFU, if I recall correctly, Burnaby, and I start to realize that it is a place, a community that shares a lot of values that I have, especially enjoying those little moments, creating the opportunity where those moments of connection appear and those little moments.

 

15:36

like start evolving, I participate to more experiences and then I decided to host. It's like, okay, I enjoy little moments, let's maximize the opportunity to have more of those, I want to host. And I host an experience called Little Nomad Adventures. Little Nomad Adventures? Yeah, where we go around different neighborhoods to walk.

 

16:02

We encourage people to take photos and share a little story at the end of the experience. We just want to have a good time exploring, trying to find those little things, paying attention. And so where do you explore? Okay, so far, because it's been almost one year, here is the list. Mont Pleasant, Granville Island, downtown Vancouver, Burnaby, New West.

 

16:30

We just had our first field trip to Steamstone. That was fun. That's where I live. Oh, nice. Beautiful place. Beautiful place. Where else? Yeah, like we have different plants. I try to vary to create those experiences. There are a lot more amazing experiences that I want to create this year. And so those experiences become like vignettes within Curiko?

 

16:59

Yeah, so they become, if you go on Kiriko and you go to explore experience, or I believe it's discover experiences, thanks Rodrigo, yeah, discover experiences, and then you can kind of search by in person or online and different categories like taste, make, explore, connect, but they're all on there. And so they all have kind of information about who's hosting them and what to expect.

 

17:26

And because we always have accessibility top of mind, we also always really describe the environment so people can decide two things. One, is this the right experience for me? And two, what do I need in order to be able to fully participate in this experience? And so, yeah, and so people can find all those and anyone can choose to book and go on any experience. And things like that, though,

 

17:56

something he'd have to get there on his own. Do you have anything that helps facilitate that?

 

18:03

Not directly, but we're a community building platform. And so we're all about relationships. And so we like to develop relationships with people who start joining our community. We encourage people to do a welcome session first, which is always actually with a team member. And so let's say if someone did have trouble getting to a location, like we had someone recently, we had a big kind of launch party for a new, for a new set of experiences in a box

 

18:33

with it called an art journaling box. We had a community member who'd been joining in person for a long time, but they lived quite far away. They had never, in Surrey I believe, and they had never made their way from Surrey to our studio space in Burnaby before, but they really, really wanted to be there. So we worked with them and we actually helped arrange like a car to come get them and really facilitate.

 

19:00

we take it by a case by case basis. We're relationship builders. We work with people and we engage with people. And so, yes, we have certain policies and in general, we don't, you know, arrange transport. But that being said, reach out. We will work with people. Now that sounds good. So you're a bit flexible as what you're doing. Adaptable, always. And so, Rodrigo, you're kind of like a local travel blogger in a sense.

 

19:29

that's come the way this works for you at least? I mentioned it at the beginning I'm a nomad I love exploring I love finding those little places to enjoy to eat and all that and this city all these cities have a lot of that so. Now John how did you get involved in Kiriko? I was introduced to Kiriko from my CCRW job coach

 

19:57

She introduced me to one of Kiriko's coaches. And so what have you done so far with the organization? Well, you started, John, through our coaching program, right? So do you want to tell a little bit about what coaching looked like for you? Just like... Well, I just...

 

20:24

Just talking with the person. It's amazing. And have you gone on Rodrigo's nomadic experiences? Yeah. Where have you been? I think I joined all of them. All of them? Oh good. Yeah. So you were in my hood the other day. That's good to know. Now you went to Steveston. What did you like about Steveston? Ah, the place. Just in general. It's good. What was your highlight?

 

20:54

Well, it's probably a new building, but I saw the... It's weird, but I saw the different save on there. Oh, yes. We were talking about it. Yes, I love actually live across the street from there.

 

21:12

I could have waved. It's nice having a save-on right there for sure. That is a relatively new building. Well, I like that because on the window it said they do DNA testing. Yeah. DNA testing? That I haven't seen. It's tiny little things like that that we find in Little Nomad. We search for those tiny, strange little things, right? No, I live there and I can't say that I've seen anything about DNA testing at save-on. It's right in the window. I'll just get my banana. I just need my bananas and leave me alone.

 

21:42

And so you like gaming tell me a little bit about that what's your favorite video game? That's a hard one Our role-playing games Yeah, like Call of Duty or something like that. Are you into the shooting games? No Mario cool, that's cool. But what do you host with Karako John not quite gaming but kind of similar puzzles

 

22:12

Like actual puzzle making like little cardboard piece puzzle type thing you like puzzles Oh, so you you would have been happy in kovat. We were all building puzzles then weren't we? That's good. So what what size of puzzles do you like to build? Like a thousand pieces two thousand pieces 3d ones. Oh, yeah, those are popular now like the wood ones. We we can build like cars and airplanes

 

22:40

No, it's just foam. Oh, is it foam? Okay, nice. We've been working for, I don't know how many sessions, like six sessions so far in assembling this puzzle, because I've been joining his experiences. For me, it's amazing how like, sometimes we have a lot of progress, but other times it's just a little bit because it's challenging. But then again, you see like three, four, five people

 

23:10

focusing on the puzzle and enjoying and having that. And is that all in person or is that virtual as well? That's in person. Good good. I think when John was thinking about me be hosting I remember you telling me that you wanted you know you wanted to create a social environment where there was an activity.

 

23:35

And that works well? What other things would you like to host maybe? Well, I've been thinking about a video game one. So you could do that virtually online and then just play together, couldn't you? I'm old, sort of, because I like sitting beside each other playing. Oh, so you like it a bit old school that way? Yeah, I get that, I get that.

 

24:02

Now, I guess sort of back to you, Sarah, and Curico being, I mean, anybody's allowed to take part or can take part, regardless of ability, but the driving force has been developmental disabilities. Would that be a fair statement? Yeah. I would say that's really...

 

24:26

where it all kind of started with kudos. But I think a big thing is that in order to kind of address cognitive disabilities and kind of work within that community, it's really important to make sure that we open it up. And so I think a big part of what we're trying to address is not only kind of social isolation for people with cognitive disabilities, but is also looking more at the level

 

24:56

of society and culture, and how can we also play into a little bit of fostering the conditions for more kind of equal relationships, for starting to tackle the kind of inherent disability bias. And a big part of that is creating opportunities for more kind of genuine interactions between people who identify as having a disability and those who don't.

 

25:26

interactions where people are on equal footing, where you know sometimes John is the host and sometimes Rodrigo is the host and kind of creating those opportunities where there really are

 

25:42

kind of genuine relationships. And so yes, I think cognitive disabilities and disabilities is kind of a big part of the work Curiko does, but a part of addressing that is also thinking about society as a whole. And so thinking about fostering opportunities where everyone can work towards flourishing lives together. And where everybody feels included. Yeah. And so what's the response been from?

 

26:12

for lack of a better word, more typically developed people, people who don't have cognitive disabilities. Yeah.

 

26:19

Well, I think, I mean, I think recruitment and getting the word out is always sometimes challenging and we have more success in certain circles and at certain times than others. But also we often have these really kind of beautiful moments of recruitment. To go a little bit back actually to Rodrigo's story is what comes before Rodrigo being introduced to us and me and my teammate,

 

26:49

kind of doing this workshop for Ignite.

 

26:53

was another team member was in an Uber home from a completely different activation. And they said, oh, what were you doing this evening? And they said, oh, I'm working with this organization called Kiriko. And they said, oh, that's interesting, talked all about it. And they said, well, actually, I have connections to this program called Ignite. Could I pass your information down? And then for that, then they reached out to us and we're like, great. So it literally was an Uber ride. But I don't know.

 

27:23

I kind of also pass that to you, Rodrigo, as someone who doesn't identify as having a cognitive disability. What kind of, what's your take? What drew you in? For me, it was a little bit challenging because the way they teach you about that topic in Mexico is really constrained. And they build a lot of

 

27:51

a lot of concepts and it should be done like this. And at the beginning I was really nervous because I was facing something new, something different, right? But after realizing that there is this whole support network

 

28:09

Sara made sure that I felt comfortable and she attended the first experiences just to make sure to guide me to coach me and all that. I started to realize that a lot of those ideas that I I learned when I was a kid or a teenager, they are all dated. It's something that tries to put your attention

 

28:35

in an aspect that doesn't matter, right? Once you see beyond that, and once you realize that it's all about sharing that moment, that experience, being humans again, to be honest.

 

28:50

it all comes natural, at least for me. That's how I feel. That's why I love Curico and being part of this process. Well, that's really nice. I mean, can you speak a little bit about people with cognitive or developmental disabilities in Mexico? How are they treated differently down there? In your experience? I'm not trying to say the whole country under the bus.

 

29:11

While I was in university, I did my social services in a school that focused on helping kids with learning disabilities. And that is where I came in contact with two realities. If you have the money, you have access to the resources the kids have. But if you don't have the money, you are confined in this little bubble that a lot of people ignore.

 

29:41

Um...

 

29:42

I interacted with a public system school that they were fighting a lot for resources. I met a lot of really dedicated people that were trying to do their best with what they had. But you could see that, again, it's this little box where they put all these ideas and the kids and all that, and the society tends to ignore that. So it wasn't, from your point of view, it's not a very inclusive approach to people? No.

 

30:12

nowadays and maybe depending on the socio-cultural level there is more inclusion, but overall my perception is that we still have a lot of work to do. Yeah, I mean DDA has been doing its thing since 1952 and you know we were all about community living. We, DDA and its founders were instrumental in getting rid of institutions in BC. You know back in the day when, in the 40s or the 50s.

 

30:42

If a parent, if you had a Down syndrome child, the doctor would often say, just put them in an institution and forget them, forget they even exist. So that's been a 70 year struggle. And I feel like there's still more work to do today. And that, you know, when I hear about CURA code, it's like that's even taking that inclusion into another step and really driving it. Would you agree with that? Yeah, definitely. I think that...

 

31:09

CURCO kind of understands that there is a big importance and a big role in a lot of the programs and services Kind of in the lower mainland that really support people with disabilities But at the same time there needs to be more than just that there needs to be things that happen in the spaces in between Yes kind of programs and services and that's where we come in as kind of making it this kind of

 

31:39

outside of those spaces. Because Curiko is not a program. Curiko is not a service. It's kind of a, it's like a lifestyle. Yeah, well, it's a community. It's a community. So what is Curiko doing to do that outreach? Is there been a media push? Is there been anything to broaden the horizons of the organization? Yeah, I think we're constantly trying new things.

 

32:04

We often do, we often show up at farmers markets and community events. We were at, I mean that's how I met you, Heaven. We were at the Community Inclusion Festival. We do a lot of events like that, but also, you know, we go to the newest farmers market. We often do little pop-ups ourselves.

 

32:31

I think our big thing is we're constantly just kind of trying new things and seeing kind of what sticks. That's kind of our whole kind of mentality for everything is iterate, iterate, iterate. So keep trying. And also, we're really, really excited right now that we're also in a process of growth. So we currently kind of operate across the lower mainland, but we have just started.

 

33:00

the slow process of eventually expanding across British Columbia. I would imagine there's no limit to scaling this. I mean you could do it anywhere you want. Yeah, yeah, that's kind of the beauty in that although it's based in in-person experiences, because

 

33:18

it is a website that kind of grounds it, it does mean that you know we could have Kiriko wherever. We recently did a process of just internally our team.

 

33:30

doing a lot of internal visioning, and it started with a blue sky thinking. Absolutely anything could go. And we had hundreds of sticky notes all categorized around this. And there might have been one that said, Kyrgyz-Ko-Hawaii. Can I work there? Yeah, maybe not the most realistic or immediate of the goals that were up there on those sticky notes.

 

33:56

But yeah, who knows? Yeah, I mean, the sky is literally the limit. Now you talked about Comake Do and Kudos. What is Real Talk and Mirakai? Yeah, so those are other things that came out of this same research and development process. So the same four partners, the same three, Disability Facing and Aim With Forward. So Real Talk is a

 

34:23

separate kind of initiative that came out of this similar research process. And it is, so Real Talk is an initiative that connects adults with cognitive disabilities with opportunities to learn about and explore sexual health and sexual identity. So there's all sorts of different kind of offerings where adults with cognitive disabilities

 

34:53

can learn about sexual health, but also, you know, explore their own identity. Coming out of this idea that, you know, all adults have a sexual identity, whether they're sexually active or not, but often people with cognitive disabilities don't necessarily get always given the information they may need to go and kind of pursue that. And also given the space to explore things like sexual identity, queer identity.

 

35:23

And so in its essence, like beyond doing, you know, fun things with Rodrigo, I can imagine there being lots of like teachable moments, like things that, you know, if you wanted to make, show people how to bake a cake, like you could do inclusive experience like this. So you could have this whole repository of just fun stuff and learning things as well, right? Well, that's pretty much essentially what Curiko is.

 

35:52

And so all these things are we have all these sorts of different types of experiences. So we in fact, we have a whole category of advocacy experiences, you know, whether that is, you know, we have a group that meets once a month on Fridays to really focus on, you know, what is it that we care about with self advocacy? We've also done partnerships with disability who have poverty and participated in their,

 

36:22

you know, learn how to talk like a self advocate, like experiences in partnership with them. But then we also do all sorts of kind of, you know, make, taste, explore. So yes, we've done cookie making. We've done, we have one up a one-on-one virtual where you can learn how to make microwave mochi. So they really run the gambit between, we also have like, you know, one where you can explore or get kind of an initial exposure to

 

36:52

ASL. So it really like some of them are very much learning, learning based.

 

37:01

But kind of the difference between maybe a class that you would sign up for is that these don't have like really set outcomes where they're only a success if you learn how to make a, b, and c at the end. There's these expectations. It's more like the goal in of itself is to create opportunities for different types of connection. Will you often also learn x, y, and c

 

37:30

yes of course but it doesn't necessarily have the same measures of success if that makes sense. Yeah no it's an experience like an experience

 

37:42

beer making, but I'm not gonna go home and make beer necessarily. In fact, we have, coming up at the end of March, a cocktail making experience where you can come in person and learn how to make cocktails. We may have had a beer tasting in partnership with Canucks Autism Network that happened a couple weeks ago. That sounds good. Now, John, are you taking part in stuff like that? Are you sort of just sticking to some of the things that you like? I do see.

 

38:12

Some that I'm interested in, yeah. Yeah. So how long, again, have you been involved with Curiko?

 

38:20

How's it? I'm trying to remember when you first like, got involved with Tamsin. I know, I don't think it's quite as long as Rodrigo. I think maybe like eight months now? But you, you, I think that makes a great point. Like you get to really choose for yourself and I think that's a big part of Curiko. Like doing the things that excite you and you don't have to do everything. Yeah.

 

38:46

Just anything of interest. Would you do the beer tasting? Yeah. I would do the beer tasting. I'm not going to lie. Yeah. Well, and I know.

 

39:00

and stop me if you don't want me to share, but I know you kind of said at the beginning when you first started Kiriko that you were really, really shy to go and join in-person things and do social things, but that you wanted to. But now you kind of join all sorts of stuff. Well, you're here to talk about it. I think that's a huge step for a lot of people. Doing podcasts makes people nervous. So the fact that you're here doing that is like...

 

39:28

really really good if you ask me. Built comfortability. Yep. It's all about building your comfortability, absolutely. In terms of meeting people one-on-one, one of the questions that I had is how do you deal with any sort of safety concerns? I think, so safety is of course important.

 

39:50

And I think a couple things, especially with in-person experiences and one-on-one experiences, we do have kind of a couple safety things in place. The first one being that hosts do complete and submit a criminal record check, complete with a vulnerable sector check.

 

40:10

We kind of have that. We also do site visits. So we do that to check for kind of, you know, potential safety concerns. But primarily we do that so that we can best describe the environment so that that kind of is a big part of the safety. People knowing what to expect. People knowing this place is really, really loud. So if you're sound sensitive, you're really gonna wanna make sure you're bringing a good pair of headphones. So all of that. But that being said,

 

40:40

is something we think about and we're concerned about and is important. One of our core underlying values is that we believe that love, belonging, and purpose, kind of all the conditions to have a flourishing life, are as equally important as safety and shelter. And so therefore we do want

 

41:10

that it never becomes something that we try to mitigate risk so much to the extent that it prevents opportunities that will allow for novelty and even discomfort. Because another one of our big values is actually this idea that novelty, so just the sense of newness and strangeness, and also discomfort are really, really...

 

41:36

important and what we call yummy nutrients for learning and growth. And so we want to make sure that we think about safety but that we do not got so bogged down in this idea of needing to ensure safety that we're not actually allowing moments of strangeness and learning and even discomfort. And so that means it must be fairly easy to sort of, lack of a better term, police the content

 

42:06

Yeah, well, it's not like Snapchat. No. So no one puts up. You can't just go on and put up an experience. You can go on making a path count. Create a click, the create an experience button. It will guide you through. You can even it will direct you to book a time with a curator. You can skip that. But even if you go through the whole process, you create an experience. It doesn't get published.

 

42:32

It goes to the team and the team will reach out to you and a big part of our work is collaboration and co-creation. And so you will reach out to us and we'll work together. I mean, we've had...

 

42:46

not a lot, but we've had some people reach out and submit stuff in there. And we never just look at something and go, oh, well, never. We ask questions and we want to, you know, create an opportunity to kind of to kind of explore what that could look like. This person never reached back to us. They were probably trolling us. But a while ago, we did have someone submit an experience.

 

43:14

that they called the fetish experience.

 

43:18

and we reached out to them and we're like, we're like, we'd love to learn more. Some of the things you suggested, like we don't think would work, but we want to know kind of why you're interested in doing this. And maybe there's a way that we can promote exploring of that in a way where everyone would kind of feel, feel heard. Like maybe there's a way, maybe not with the images you, you, you, you posted, but there's a way. They never got back to us. So we were being trolled,

 

43:47

one of those moments where internally we're like, oh, what do we do with this? And we're like, no, we reach out. We try to have a conversation. Yeah, you know, you never know what happens until you take a look. I suppose. And who knows? Like, it could be something worth exploring. It could be a very good learning experience. Who knows?

 

44:04

compliment a little bit something that was interesting for me during the process of publishing an experience. I'm talking about an online experience is after you go through the process that Sara shared there is a tasting session where Sara can compliment if I miss something, but a Curico team member, a taster just scheduled a session with them and he or she will give you

 

44:34

feedback regarding your online experience on things that you can improve or to consider and on that and For me that is really helpful just to make sure that I'm aware or like I always like to Polish things up right sure and feedback is really important to achieve that and I was happy to hear that There are tasters ensuring that online experiences Meet that

 

45:04

It's not a requirement, but that idea of creating a wholesome space or a safe space. Yeah, it meets a certain threshold that you want to meet. Now, like with your pieces, like you meet up with people. How many people do you generally go out with when you do your nomadic thing? Um, between three and I think seven is the biggest so far. And so does then you do that in person, you go do your thing.

 

45:33

Are you recording any of that? Does that then become an on-line experience? Can you link the two kind of things or is it just an in-person thing? Okay, when the weather cooperates, it's in person outside, there is a meeting point, a starting point, and I will share an ending point if it's different.

 

45:51

At the beginning, we always ask, are you comfortable of me taking photos of you and sharing those photos on social media, on printing and all that, just to share them with Curico? If they say yes, awesome. If they say no, no photos. And the photos that we take during the experience, everyone is like, you can decide if you want to share them with other people or if they're with you.

 

46:16

That's it. If the weather doesn't cooperate, it's indoors in the studio and we have a couple of variations. Chocolate is from around the world. That's a fun one. Curious ingredients like things that we're not used to mixing like vanilla ice cream and soy sauce. Surprisingly delicious. Like I did not want to try it, but amazing. I, you know, for my own history, I spent many years working in the fine dining industry here in Vancouver.

 

46:46

We're in Richmond, but in Vancouver, and I worked with a chef who made roasted garlic ice cream. And it was divine. It was, sorry, total tangent here at the moment. No, no, no, but it's the core, right? Like Sarah was mentioning, creating an environment that is safe, but it also allows you to have that sense of adventure and risk. Like, yes, when we are tasting food, always ask about allergies, consider that.

 

47:16

that join the experiences have the option of, hey, I want to try these weird things that Rodrigo are presenting to me or no, I don't feel comfortable and no problem. Like we move on. So, yeah. No, sounds good. To return to kind of what you were asking with the content. So there was when Kiriko kind of first started, so as the iteration of Kiriko, we did have an experience type called video.

 

47:43

So it could be footage taken during experiences or it could be things filmed exclusively to live as videos. Now we had several of these, some of them professionally produced, some of them not.

 

48:00

but this is something we no longer have. We still have a YouTube channel. You can watch our old hip hop videos. They're quite fun. And some of the others. But this is something we kind of, again, kind of learned, reiterated, and moved away from.

 

48:16

because it takes a whole lot of time and a lot of resources to create video experiences. Yeah, that could be time and money as well. Yeah. It's not cheap to do. Yes, agreed. Very, very true. And the truth of the matter is that there's a huge market for that that's already being done. YouTube, you could search for anything and everything. And so yes, we put our own Curiko spin on things and kind of the accessibility.

 

48:46

focus.

 

48:48

but we were really finding that people weren't necessarily watching them, that there wasn't that same level of community being created in them. So we kind of decided to move away from that and focus more on actual live experiences. So focus on experiences that happened either live, one-on-one or as a group virtually, or in person, again, one-on-one or as a group. So all of our, you know, because we do do one-on-one experiences

 

49:18

group experiences. But the one thing you had mentioned way earlier, you asked about Meraki. And so Meraki... Again, another word I'm pronouncing incorrectly. Yeah, another word we've cut. I want to actually think is a real word, but in a different language. But again, kind of a word we've repurposed, so totally understandable.

 

49:41

But Meraki was boxed experiences and it happened back when it was Kudos and it wasn't directly connected to Kudos but kind of. It was a separate thing and the idea that they were complete experiences, everything you needed to...

 

49:57

have a moment of novelty to try something, to try an activity, to be exposed to something, but connected to a real person who carefully curated it. And so there would often be, there'd be all the supplies you needed to try something, but there'd also be, you know, links to videos, maybe audio clips, or instructions with both words and pictures, all this stuff. And the idea was for people that were more intimidated by going out to a physical location

 

50:27

a virtual, this would be a way to get started, to try. And also it could be something that people could bring home, they could do with other people in their lives, support workers, all sorts. So that is something that we have carried over to Kiriko. So although we do not have video experiences anymore, we have kept and grown on this idea of boxed experiences. So it's no longer called Meraki, it's just called Boxed Experiences. It's just a type of experience on the platform.

 

50:57

but we've played around with it and we've now also played around with this idea of different ways to engage with boxes. So we've got coaching boxes as well as boxes that are more tied to individual house. And now actually starting next week, we have started our very first ever box cohort.

 

51:19

So this is a box that people have signed up for. You could sign up to just get the box or you can sign up to join the cohort. And the idea is that the same group of people, it's 10 people this time, are going to join a virtual experience and it's only this 10 people. It's closed once it started. The same 10 people with the exact same box of supplies are meeting for six weeks.

 

51:45

and getting a chance to dig a little deeper, to get to know each other a little more, to get a sense of knowing who to expect, but also with the same materials, getting to really explore a topic.

 

51:59

an area over time and kind of build on the learning. So we're exploring with this. And so we're starting off, this one is art journaling, which is a virtual experience we have been doing for over a year now. It's actually co-hosted by myself and my mother who lives in Calgary, which is why it's virtual, because we co-host from a distance. But we've noticed that there's kind of a limit to how much kind of week on week we can build on it,

 

52:29

that there are always being different people, which we wanna maintain, it's important. It's what makes group experience, group virtual experiences so low barrier. But.

 

52:40

we want to play around with this idea, what if everyone for sure had the same supplies? Everyone had paint, everyone had Modge Podge, everyone had, you know, access to even stuff like bubble wrap to play around with. So everyone with the same supplies and we're the same group of people for a set period of time.

 

53:01

And so again, we're always kind of experimenting and playing around with formats. And so, yeah. Well, that sounds good. Because you've also said the website also mentions working with schools. Can you tell me, expand on that a little bit?

 

53:15

Yeah, so I don't actually know where you got that. So I'm sure, I believe you, I'm sure it's there somewhere. And I think our big thing is we definitely, we definitely, we say we're primarily for adults, but that being said, we definitely also are open to young people and even families. Occasionally we have some experiences which are 18 plus or 19 plus, like all of our, you know, lovely,

 

53:44

beer tasting and cocktail making mentioned earlier, but but we definitely have gone to a lot of like transition fairs and stuff like that where where we've kind of worked with and promoted with with younger people but also But also that's something that in the past both with kudos and now with Kiriko

 

54:14

high schoolers or university students are also really interested in volunteer opportunities that are not cookie cutter, are not you know here is a list of tasks to do, but where people get to design it themselves and volunteering with Curiko as a host is a really great way for young people to volunteer where they're sharing their own interests. You've been, sorry you've been with Curiko how long

 

54:44

Personally, not that long actually. I'm trying to do the math quickly. I think the easiest will just be to say in July it will be two years. Two years, that's long enough. I mean, have you seen it expand in that time? Are you watching this grow a lot? Yeah, definitely. I think it's really, really exciting to be a part of an organization that.

 

55:09

really is constantly reiterating and listening and learning. We've currently been in a process of kind of engaging a range of community members.

 

55:19

in evaluation where we seek to understand all of our members and where they're kind of at and where Kiriko comes into play. I've also been involved in scaling, which is incredibly exciting to see how Kiriko might look a little different when we go to, let's say, up north in Prince George. That's fantastic. Now, like, when it comes to the things that you do.

 

55:45

Rodrigo, would you might be doing things that cost money and if so where do the funds come from?

 

55:51

Okay. Actually, on my end, like we have done both. Usually, I focus like most of the times is exploring only transportation. I suggest bring some change for food in case you want to grab a snack while we walk. And for me, it's just being practical, right? Like we are on the move, we are exploring, the goal is to enjoy, right? We are not going to a fancy restaurant or no. But yeah, in the other cases, like for instance, chocolates from

 

56:21

curious ingredients. Curico sometimes.

 

56:26

helps me cover the cost of the chocolates for instance. Other times I bring the ingredients from like my fridge because I have them so no problem. For Steve's done that was our first field trip. Kuriko rented a car so they offer two options like you can meet us there no problem or you can meet us at the studio and you only pay I think it was ten dollars and join us on the

 

56:56

So I think that is good to try to create that balance because yes There are some things that you want to try that will cost a little bit of money but it's also important to keep it accessible right because For me and I maybe I'll be a little bit greedy saying this but I believe that for Curico It's also important to Open experiences for everybody Now like let me ask you a more of a personal question

 

57:26

as an immigrant, how does this system work in your life? Okay. I love it.

 

57:36

I was stuck on a loop since I worked from home. It was really easy. I wake up, emails, dishes, calls, emails, work. What is it you do for a job? OK, I created my own company. We help purpose-driven solopreneurs create and develop their own presence. So those people that are alone versus the world, they have this business idea, and they have no idea where to start. I help them with their own presence.

 

58:06

websites, automation, online payments, all that stuff. And I enjoy that. I like it, but that is work. And I learned that I also need to pay attention to the human part. The little nomad that lives in my heart. So Curico was great for that, because he gave me the option, like the excuse to go out. And not just be on the weekend watching movies and just going outside to the grocery.

 

58:36

and go back, it's dangerous. And it's like I ask you this because my wife's an immigrant and I sort of so I understand the the you know the loneliness that that can bring when you have moved to it you've decided to move to a place and you don't have your tribe with you you don't have your friends or family around so that can be really difficult and that's why I just sort of asked how Curiko works.

 

58:58

in that respect, you know, it's not just something for people with developmental disabilities, it's everybody who can need that outlet, really. Absolutely. They have some amazing values and that...

 

59:10

allow me to identify with them and create that sense of belonging. It's like, okay, I've tried going to bars, I've tried other type of events, it's not the place for me, for my personality, right? And I found Curriculum, and it was like, okay, this is amazing, like-minded people doing different things, creating, evolving, like, yeah, so it works great for me.

 

59:38

Yeah, I think I'd love to just, to kind of throw it, I guess, to you, Rodrigo and John, and just kind of, I mean, we kind of were just getting at it now, but I'd love to know maybe even in one or two words, John, like, what do you kind of think for you the impact of Kiriko has been, or why do you think you kind of still join?

 

01:00:07

Oh, I kind of wish this was around 20 years ago for me. Because it helped with my social aspect. It helps you get out of the house? Yeah.

 

01:00:26

I saw you nodding here when Rodrigo was talking about kind of feeling stuck and like a way to get out. Is that kind of something maybe you have felt a little bit too? Probably, yeah. I think that's something we all feel in our life from time to time. I know I have, yeah, absolutely.

 

01:00:52

Sorry. Go ahead, go ahead. I was just gonna say, how would you then kind of summarize for yourself, Rodrigo, the kind of impact? For me, it's reminding me what is to be a human again, to have that sense of connection, of putting feelings and emotion at the middle versus chasing the money and other things, right? So it has allowed me to.

 

01:01:19

Remember that those connections are really important, like meaningful connections. That's pretty deep. Yeah. That's a pretty good impact statement. I mean, and this is why I love the work I do, because as much as it is my work.

 

01:01:42

It is also something that I too equally find I get so much out of, just like you two have mentioned, where I get this sense of connection and community and genuinely making relationships with people in the course of my work, which is not something you always get in every work you do. You know, does that mean that sometimes I get text messages at weird hours? Of course, but it also

 

01:02:12

have friendships and people I care about and it really is two-way relationships. I didn't ask you this in the beginning about when I said ask about yourself but is that part of your background and your education in this kind of stuff?

 

01:02:27

Yeah, I think everyone who works with Curiko, if you ask the question of background, you will get a different answer, which I love. But for me personally, I come from the social sciences. So I have a master's degree in socio-cultural anthropology. And then outside of that, really kind of focused on kind of ethnography, but from a bit of an academic lens.

 

01:02:57

guides of Canada at first, kind of with their advocacy department and also with their research department and then a couple other small things and got led to then doing community engagement with the Canmore Museum and various things and it kind of, I always kept returning to how do we actually take research and working with people and kind of connect them more.

 

01:03:25

So the research and the engagement, where it seems very connected and where research is also kind of connected.

 

01:03:32

to forward thinking, to doing something, and not feeling so extractive. And so, kind of finding where I am now, I'm finding this kind of my background in doing a lot of kind of community, engagement and community focused work, but also a background in social science research, for me has kind of been a beautiful marriage of things. So you're kind of where you should be? At this point you're gonna stick around? I mean, yeah, it sounds cliche, but yes. That's funny.

 

01:04:01

I think we're pushing over an hour now. This is probably my longest podcast. And I appreciate it again, appreciate the effort and not coming out and we're talking for 15 minutes now. Hey, look at the time. Awesome, yes. And a huge thank you to you Evan again for inviting us.

 

01:04:20

And for instead of it just being kind of one person from Curiko kind of allowing a group of us to come and talk. Well, thank you. And I think this actually kind of worked and I promised to have some new gear next time. We should do this again. Once this expands again. I mean, I think there's 19 people working for Curiko now. So not employed by Curiko. So we include on our website, on our kind of team page, we also include some people.

 

01:04:47

who do more kind of a leadership role in the volunteering. So like moderators and stuff. So we do have a mixture of people who work full-time, part-time, and we also have people who work on more of a contract basis like our tasters. So very, very kind of casual.

 

01:05:07

but we also have a lot of volunteers that play very crucial parts. So I don't know, it's kind of hard to pinpoint our team in terms of numbers. How many people actually are involved online? How many clients, I guess, as you would call them? Yeah.

 

01:05:25

we call them community members and that is a very constantly changing number because people engage again different times different amounts but we do have we do have hundreds of people with accounts okay like I think last time I checked I mean this is not the most accurate number but like a thousand ish okay but those are accounts so different levels of use well we'll help you boost

 

01:05:55

Yeah. Okay, well you've been listening to DDA's Encouraging Abilities podcast. We've been chatting with Sarah Knowles, John A., Rodrigo Galvan, all from Currico. Currico is an online platform which, I said it wrong again, didn't I? Currico. Yeah, it's Currico. I kind of like how you say it. I'm going to keep that in. Currico, it's an online platform which can also mean real world interaction to help connect people through experiences.

 

01:06:25

In particular, people with disability in the disability community who might not, who might find it difficult rather to cultivate a community of their own. So all you can find, all you need to know at CURICO, that's C-U-R-I-K-O dot C-A. Thanks again for you all for being here. Yes, thank you for having us. Thank you. I am your host, DDA Communications Manager, Evan Kelly. See you next time.

 

Making personal sacrifices for your partner's career is one thing, creating a home in several countries while at the same time caring for a severely disabled child is another. We caught up with Rachelle Rosolofo-Czerwinski to talk about her new memoir, The Life That's Chosen Me - From Russia With Love.

 

TRANSCRIPT

 

The Life That’s Chosen Me – From Russia With Love

 

00:07

It's time again for DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Joining me today is Rochelle Rosa I'm hoping I'm saying that correctly. You do. That's a difficult one. Now Rochelle has an amazing story to tell, which she has brought to life in a new memoir called The Life That's Chosen Me From Russia With Love. It is available on Amazon and it's a very well written and fairly quick read if you're interested in picking it up.

 

00:37

travel writing, part diving into the culture and language of other countries, part learning to do that with a family of four where one child has a severe developmental disabilities. Rochelle was born in Madagascar, raised in France, and then married a German Canadian who worked high up with the United Nations, and it's a job that took her husband, Chris, to East and West Africa, Italy, China, Egypt, and then over to Russia.

 

01:02

To me it sounds like an amazing life, but of course there are hardships and difficulties along the way because it's not just about traveling freely, it's uprooting, it's making big changes, it's moving for a partner's profession, it's creating homes, even learning new languages, all with a child who needs extra care. Rochelle and her family, which includes her two sons Mike and Nicholas, now reside in Vancouver and we're of course happy to have them back here. So thank you for joining me today, Rochelle. Thank you, Ivan, for having me.

 

01:31

Now, it's clear you've led a very interesting life. Before we talk about disabilities, not everyone can do what you did. That's getting up and moving for a spouse whose job has changed, especially with an entire family. How difficult was that for you? To tell the truth, at the beginning, it was not. I just took it in stride, you know, and here I am, a new bride, and my job was to follow my husband.

 

01:58

I just thought when I came from Madagascar that we would settle in Canada. So little did I know that six months after settling down in Vancouver, my husband announced that we go into Africa. And from there, you know, after Africa it was Italy, and as you mentioned, then after Italy it was China, and then Egypt, and finally Russia. And I think in Russia I started feeling a little tired.

 

02:26

Globetrotting, I guess, as it were. Yeah. That must have been, like I said, it's not just traveling freely without kids when you're young or something like that. It's literally recreating home wherever you are. I mean, is that a difficult thing for you to do, or do you just take that on as a challenge?

 

02:47

I took that on as a challenge, but as time went by, it became more and more difficult. Like you're losing your friends and you have to look for new schools and create new homes. And of course, you know, with a child with special needs, and our son Nicholas had severe, significant special needs, it became harder to find therapies for him.

 

03:11

physiotherapies and speech therapies and this and that. So it's difficult enough if you stay in the same city like Vancouver, but imagine if you have to move country and not just country, but continent because actually change continent each time. Yeah. Well, exactly. And obviously there's some cultural things we can dive into as well, but you also mentioned that you've learned multiple languages. How many languages can you speak now? More or less fluently, five I think. French is really my first language.

 

03:40

I came to Vancouver, but because we did everything in English, I kind of picked English. I did learn English in school. And you may still hear a little French accent here and there. Oh, of course. No, more than a little. More than a little? Okay. And that's been like 20 years in Vancouver now. But you also, can you speak Chinese?

 

04:09

I did study Chinese for a semester in post-secondary and that was one of the most impossible things I've ever taken on. So I doff my hat to you to be able to do that. And did you learn a bunch of Russian then as well? I learned Russian during our two years in Russia. Russia was not as easy for me. I think if you read the book, I mentioned that.

 

04:37

I have more difficulty when it is a different alphabet as well. When it is a Roman alphabet, French and English share the same alphabet. Most European languages like German, like Italian, which I speak too. French. We share the same ABC. Yes, the romantic languages, right? Right. But when it came to Russian, they used the Cyrillic alphabet.

 

05:01

When it comes to Chinese, they use those hieroglyphs, those pictograms, and so then it becomes more difficult. So in those countries, I learned more to talk and to understand. I didn't put too much energy in learning to read and write because I knew it would take me years, and yeah, so yeah. So was it a bit of a relief to get back to Canada? Absolutely. And when did you come back to Canada? What year was that?

 

05:29

So I arrived in Canada from Madagascar in 1984 to get married and we started our Nomadic life soon after that and we came then back for good to Canada in 2005 now is your husband still working in Russia or is he for here for good now to be in Canada He's back in Canada for good. Yeah. Oh, that's good. And is he still working with the United Nations here? Or is it something different he's doing? Well, he does some consultation work. So

 

05:58

at least we'll be based in Canada, which is providing more stability for the family. But then he did some consultation work in Africa, in Asia, and yeah. Now, tell me about your sons. Michael, he's your typically developed son. He must be, I'm guessing, pushing 30 now? You're guessing right, he's 36. And Nicolas.

 

06:23

our young adult, but still a big baby in many ways. And Nicolas is now 35. Oh, so they're, yeah. So what is, you talk about in your book about Mike, trying to adapt in a variety of different schools in different countries, which must have been a challenge for him at the same time. I was thinking, when I was reading this book, how he probably looks back on that with a certain fondness and he's got this incredible life story behind him now. So what is he doing with himself now?

 

06:50

So now he works in, he used to run his own company. And then when COVID hit, you know, that kind of took a dive like many small companies. And now he's working with a concrete making company in Coquitlam. Nice. Yeah. Nice. And so how's Nicolas doing? And Nicolas is well settled in his own life. He doesn't live with us anymore. It does, it cannot live alone.

 

07:18

because of his special needs, but he shares a house with another person with disabilities and with a team of support workers. So very, very much like what DDA does for our clients, but like you mentioned, you're working with Spectrum organization. And how is, does he like living on, I guess I should say, how long has he been living on his own? And so I think he started living on his own in 2009.

 

07:46

That was a big transition for me because as I said he's still like a big baby and of course for a mother to let go of a baby no matter his size or his weight or whatever, he's still a baby. And so that was that big transition for me to let him go, yeah. And does he enjoy being apart from you? Is he enjoying his independence? Yeah, he has a fairly structured life. He goes swimming on Wednesday, Science World on Thursday, music on Tuesday.

 

08:16

a library on other days. I think he's going to outlive all of us. Well, that's good. I mean, it sounds like he's really enjoying his life. Let's go way back though. Like when you first knew that Nicholas was gonna have problems, how did you feel about that? And how did you deal with that? So I remember that clearly, that was in Africa. We were in this small African country that's called Djibouti. And...

 

08:44

And Djibouti is one of the hottest countries in the world. It's like 45 degrees Celsius at night. So during the day it's even more. And so the habit of people there is to have a nap. Otherwise you cannot survive. Nobody works between 12. It's the siesta, I guess. La siesta, exactly. Everybody's away and have a nap.

 

09:09

between 12 and three, and most organizations would only open until one, and then everybody's off until the evening. And I remember clearly one time we were having a nap, and my husband got up and he told me Nicolas is doing some funny things. And, you know, I was a new mom, Nicolas was two months old, maybe three, I said, oh, you know, he's just a baby. And my husband said, I think he's doing really some strange things. And so finally I got up.

 

09:38

And yeah, and they had no experience at all about seizures, but he was having seizures, yeah. So that was quite a shock, yeah. And that sort of, and then at that point you knew like, okay, there's some developmental things going on here. Exactly, so luckily, my husband had more experience in seizures than me because he had volunteered with L'Arche, which is a big organization, and they are everywhere in the world.

 

10:06

and he had done a gap year after UBC in France. And so he had been exposed to people with disabilities and he told me we need to take him right away to the doctor and I'm like, oh my God, are you sure? And so yeah, wait. And then after that, it went really fast. Three days later, we were on the plane to Paris to a pediatric hospital.

 

10:33

stayed there for three weeks and for me it was the worst time of my life having to come to terms with the diagnostic that you will be very impacted and the doctors in France said you know we don't know how it will develop but we just know it's going to be.

 

10:51

long, you know, life lasting and stuff. So the big question that I think is interesting about, you know, your book is what is it like moving from country to country that is a child that has more needs than a typically developed child? It's very challenging. As I said, we need to find therapies and that was my job. My husband's job was, you know, he was moving into a new office, getting to know his new team and

 

11:20

And for me, my job was to find a home and hire people and find help and find schools. And at the beginning, as I said, I kind of just, okay, that's my job. But as you get older and you move from country to country and this is your fifth country, and Nicolas was getting older, and I really kind of missed some stability in his care, in his life, instead of uprooting.

 

11:50

everybody every three to four years, yeah. Now, like what I kind of want to touch on is because my executive director Alana Hendren has actually written a book about her experiences traveling the world and seeing how people and how organizations come together to help people with developmental disabilities. It's not published yet but she's working on it. So like when you go to someplace like Djibouti and you have a child that has developmental disabilities, how do you feel like you're treated?

 

12:19

What's inclusion like in Djibouti? Yeah, so that's a very good question because every country was different. I wrote a book about Russia because Russia was kind of the worst country and it was good that in a way it was the last country after Russia I was done, like I wanted to go back to Canada. Djibouti was our first country with Nicholas and Nicholas was a baby. And so, you know, as baby.

 

12:47

you don't really see much difference. He was very cute. He was healthy, apart from his disabilities. And so we were not treated any different. There was one time where I had to take him to a hospital in Paris. And the local daycare was very nice and decided to take Michael early. He was younger than what they would have taken.

 

13:15

But because of the situation, I was away with Nicolas for three weeks and my husband had to go to work. And so yeah, so people were nice and trying to help. And our neighbor was a physician. And so she said, don't worry, I'll keep an eye. You know, I'll bring soup to you, too crazy if you need. Or, you know, so the community kind of rallies around you, which was nice, yeah. So what was, and what about China? Like how old were you, was Nicolas, when you were living in China?

 

13:45

So China was 94 to 98, and Nicholas would have been 10. It would be six to 10. And in China, we had a wonderful household helper. Her name was Mrs. Goh, and I really saw her as Nicholas' second mother, because she was so nurturing towards him, and that was one of our best countries. So China was not.

 

14:14

very good for people with disabilities, people who look different. There were a lot of orphanages in China that had children that families could not keep. And many of those kids were kids with disabilities. And some were girls because in that time, there was a one child policy in China, so people could just have one child, and because of their culture, they'd rather have a son. Yeah.

 

14:43

Right, so it's kind of sad. Exactly. And so when they have daughters, then they knew they were not allowed a second child. So they would give the baby girl to orphanages in order to have a son or have a chance to have a son. So China was not the best country officially with our government policy. But you find everywhere good people. And Mrs. Guo, our nanny, was one of those people.

 

15:12

And do places like Djibouti and China, it's one thing to be able to hire support, which not everybody's going to have, of course. Yeah. But are there programs that you can enroll kids with disabilities into? Are those readily available or is that difficult to find or is it just not supported? They were very difficult to find. They were practically non-existent.

 

15:40

So when we were in Egypt, when Nicolas was young, he could still manage to go to regular schools with a helper, like an SEA, Special Education Assistant. So that's what we did for a while. But then as he grew taller and older, it was really hard to leave him in the preschool when everybody was two years old and he was six. And so that was kind of challenging. Yeah, I guess so.

 

16:06

So yeah, we had to be creative and in some countries I had to help create a school So that Nicolas could have a place to go during the day. Can you tell me a bit about that? About creating a school so like in Egypt for example, I was looking for a school. We were living in Cairo

 

16:26

And there was no school in the neighborhood, and so I talked to people, and one lady said, you know, I'm thinking of creating a school. And I said, please, please, would you, you know, I could help you, I could help you financially to get it started, or I could give you books and for Nicholas, or activities and stuff like that. So that woman, she had typical kids.

 

16:55

and then she had Nicolas as only one and only special needs child. So that was in Egypt. That was in Egypt. You must have felt a little bit like DDA back in the 60s when we created the first special needs school. I think so, yeah. You're a ground breaker in your own right. But again, you're right, I forgot to mention Egypt. How was the community rallying around you there? Did you feel supported? What's inclusion like in Egypt?

 

17:25

In Egypt, I was involved in creating the first directory for special needs to help families like mine who had to go from zero to find out where is the special needs school and what services do they deliver. And that's one thing I'm quite proud of.

 

17:53

So my name is on the first page of that book. It's quite a thick book. I did it together with an NGO. And so hopefully it's still around, and I think it is, and they probably keep updating it when new services come up. So it had the list of schools who were inclusive, who accepted people with special needs. And it was also a list of, say,

 

18:20

physiotherapist, speech therapist, and speech therapists who could also do it in French or in English, apart from Arabic. And so it was very good. So this is kind of a support manual that you helped put together? Yeah. And that was in Egypt? Yeah. Oh, fantastic. That sounds really good. By comparison, when you come back to a country like Canada...

 

18:45

How does that feel? What are the differences that you've noticed being back here? I felt so relieved. So for the first time in our life, we had stability in the care. And so for the first time, things were organized. Nicholas was enrolled in Eric Humber, which was near Oak Ridge, where we lived.

 

19:10

So we had the support of a social worker, a case manager, the school pediatric team, so there was physiotherapists, so that felt so different and so much better. What about the overall levels of acceptance in Canada? Like, I mean, having some support and some inclusion, but I sometimes wonder...

 

19:39

walking down the street in other countries, if people, you know, look at you weird or cross the streets or something like that, how does Canada feel against these other countries? Canada is one of the best. I remember in China, Mrs. Guo, my second, you know, the second mother of my kids, I remember one day she was taking Nicholas outside for work and she came back really fast and she was crying.

 

20:07

And so I asked her, what's wrong? What's the matter? And she said someone on the street had told her, why do you take care of someone like him? He's a waste. He's a waste of resources. And she was so shocked. And she came back right away, and she was in tears. And then you've got to know, of course, that China has 1 billion, 300 million people to feed.

 

20:36

And probably some of those people see people with disabilities as a waste of resources. And when the government is not encouraging the support for people with special needs, then of course that's how also the population see it. So it's very sad. Yeah, it's unfortunate. There's going to be those people, you know, that just don't support it and are, you know, it's...

 

21:03

It's weird, but so in spite of feeling really great and at home at ease and accepted here in Canada, what do you see that we can be doing differently or better? So Canada, as much as it's one of the best countries we've lived in and we still live here, and I'm so grateful to be here with the family after I've been lived in five and six different countries. But obviously nothing is perfect.

 

21:32

And I wish families would have more choices about options, just like everybody else, that they would have options where to live. And I'm talking about their children with special needs. Like sometimes due to funding constraints, they tell you, okay, we're going to find a home-share provider for your child, but that's going to be in Burnaby. And so if you live in Surrey or in Richmond,

 

22:01

of course naturally would like to try to be close and it's hard to have those choices. I also heard recently that the government funding to CLBC is going to be more challenging to get as they get more people every year transitioning from high school into young adulthood. And...

 

22:26

That saddens me because it's really hard on families when school is over and they have those six hours of school taken away and it's like, okay, what do we do now? And often it's nothing. The answer is there's nothing until you have funding put in place and you have the support in place and the care workers and it takes a while. When Nicolas graduated from high school, it was in 2008.

 

22:56

And I was one of those families. When high school was about to finish, I asked the principal, by the way, where does he go from here? What does he do from here? The principal said, I honestly have no idea. So that was quite disheartening. I actually was the first coordinator of a transition group.

 

23:24

called Vancouver Parents Transition Group, which is still going on now. And one of DDA staff, Terry Schenkel, was one of the strong, really one of the best advocates for families that he would, he helped me get Nicholas income assistance. He really went all the way, like, okay. So it was great to have.

 

23:52

Yeah, he was very good to be part of the DDA team. He's retired now. But often, I hear for families, that is sort of a difficult time. There is that transition period between high school, where you age out of childhood programs, but you're not ready for adult programs yet. And whereas DDA, we have lots of day programs and things that people take advantage of. And we've got a very robust art program with our instructor, Kim Almond. And they'd

 

24:20

produce some amazing, amazing stuff. So I'm not sure what Spectrum offers. I know he's in a group home with Spectrum, but do they have all the same sort of programs that DDA would offer? Nicolas, because of his disabilities, is kind of challenging for him to fit into a day program. Like he has to have his two hours nap after lunch. And so what he does is more like a home-based program. Like we customize his program for him. So.

 

24:50

As I mentioned earlier, he goes swimming once a week, and he goes to Science World once a week, and he goes to the library, and he has music, and so, and I think he has a good life, yeah. So he really likes a lot of structure? Yeah, I think he likes that. At the same time, as I mentioned in my book, sometimes I really wish he could have more fun. He's 35, and he's a guy, and then...

 

25:17

And sometimes, you know, his brother jokes with me, he said, mom, maybe you should take him to a pub and you guys have a beer or. Yeah, why not? Exactly, why not? So I'm like, okay. I can recommend some good ales, that's no problem there. Now, moving on to some of my other questions here, like I don't have the lived experience you have.

 

25:42

You talked in your book about a time when Nicholas fell in the bathroom and hurt his, hurt one of his teeth. Did he knock, actually knock the tooth out? Yeah, he did. Ouch, ouch. Oh yeah. And that was in Russia, was it? That was in Russia. And in spite of the fact that the caretaker was there and you talk about guilt having not been around yourself. I am a parent. I understand guilt if something happens to a child, not so much now they're, they're older and they can look after themselves. But

 

26:10

But is that guilt harder when your child has developmental disabilities and doesn't grasp certain situations? How do you deal with that feeling? Yeah, it's harder because of course they are more vulnerable. Nicolas doesn't speak, he's non-verbal. Like I said, he's really a two-year-old in many ways. And so obviously he wouldn't know whether a situation is dangerous and he wouldn't know how to call for help. And so in that situation, I believe...

 

26:39

It was with a babysitter who maybe, you know, I could have trained her longer. And so that's where some of my guilt is that I was too much of a hurry to go to a cocktail party or to a dinner party. And so I was, okay, so she had two sessions training, she should be good to go. And obviously that was not enough. So she left Nicolas standing in the bathroom.

 

27:08

Well, she went to get a diaper. And Nicolas doesn't have a good balance, but maybe she was not really aware of that at the time. Maybe I did not stress that. It's hard for me to remember. But what happened is that Nicolas was standing around in the bathroom on his own, and somehow must have lost his balance, fell, and knocked his tooth on the sink of that bathroom and lost one tooth, yeah.

 

27:38

and that must have been painful. Oh yeah, I've been there. It is painful. Now let's go, I wanted to touch base a little bit about Russia because you mentioned that that was sort of the worst country when it comes to inclusion. Even diversity, you talk about living in this area where they had these neo-Nazi rallies and stuff. That sounds scary to me. Like how did you cope in a country like that?

 

28:06

Yeah, it was scary at times. I felt vulnerable, I felt isolated. Because in Russia, when a child is born with visible disabilities, like Down syndrome or like any other encephalopathy, the government tells, encourages the family to give the child away, to give that baby up.

 

28:28

to the government. And then those babies are somewhere in the countryside in Russia. So you don't see many of them in the city. The two years I was there, I've never seen one. And I think that's one of the reasons when people saw me walking the street with Nicolas, they were all staring, really staring.

 

28:49

at you, like with those big eyes, and like, who is she? What is she doing here? And that was what I was telling myself too. What am I doing here? No, everyone is staring at me. So yeah, it was quite difficult. And then we went to this orientation meeting as a newcomer and this really nice Russian man is there and he says, okay, don't do this, don't do that. Don't bring presentiments to as a no-stay gift because that's what we use for funerals. So, you know, kind of the cultural things.

 

29:19

And then at one point he says, oh, and around the 20th of April, don't leave your place if you're a visible minority. And I know, so there were a few of us from Africa, from Asia, and we kind of looked at each other, and finally one brave one raised her hand and say, why is that? And the guy say, oh, it's because the 20th of April is Hitler's birthday. And if you kind of...

 

29:47

dark skinned or they look different, it's better, you stay home. And I'm like, what? I honestly, it was, I really felt like, oh my gosh, this country is not for me. I mean, it sounds completely backward to me. Yeah, absolutely. And so the Russian government really encourages it to give up kids and what? They just take them to these institutions out in the countryside? Yeah, yeah.

 

30:12

Any idea about the conditions of those institutions? I'm scared to even ask that question. Yeah, so when I looked into those institutions and you see babies in their cribs with no human contact at all because there's not enough staff or and so quite a few of them got adopted.

 

30:32

by Canadians or Americans. But I feel for the families who had to give up their babies because they were kind of really put under a lot of pressure. The doctor would come and talk to the mother and say, your baby is better. You forget about your baby.

 

30:52

That sounds, I mean, again, that's why DDA was created. You know, back in the 40s and 50s here, that's what doctors would tell parents, you know?

 

31:02

put them in a institution, forget they even existed. And now, 72 years later, we know that community living and inclusion works so much better. Early intervention works so much better. And we can bring these people into the community and they can have happy and joyful lives. Absolutely, yeah. So everything that you've been through, to me, sounds immensely challenging.

 

31:28

But even in the book you had ideas of adopting a third child. I guess that didn't pan out. But I kind of keep thinking, wow, you want to do even more? So instead you got a dog, a nice big dog named Shona. I guess I'm sure she's no longer with you anymore. But you're that kind of person. You just want to take on challenges, is that it? Well, you know, it's a good question, because when you have a child with special needs,

 

31:57

and you have another child who is typical. And I had always felt that I was raising two only children because they were so different. And so, and I felt sorry for Michael that he didn't really have the sibling he wanted because Nicholas was non-verbal, so they could not communicate. They could not really play much with each other. They did at the beginning when they were both very young, but as they both grew up, Michael.

 

32:26

soon enough realized that his brother was not a typical child. And so I felt the idea of the third child, I think, was more for Michael than for Nicholas. As you mentioned, I had enough to do with Nicholas, but I felt somehow I felt really sorry for Michael that he didn't have a sibling he could have had if I had a typical child. And that sort of leads me to another question. There's lots of studies that show...

 

32:56

siblings of people with developmental disabilities develop more empathy and compassion. Do you see that in Michael? Yes, I do. He has this elderly neighbor next to his flat and he's really helping her out. He asks her, do you need anything? Can I do shopping for you? So I see that in him and yeah, I'm happy to see that. That's good.

 

33:23

So at the end of all this, what made you decide to write a book, a little memoir on this? I felt that not many families decided to have the life we had, like moving from country to country, so let alone with a child with disabilities. And so at the end of our nomadic life in 2005, after I kind of helped to get Nicola's life settled.

 

33:51

I felt I really need to write a book about our life. There is a quote from Maya Angelou where she says, there's no greater agony than carrying a story inside you that is still waiting to be told. And I felt that way, like I need to tell those stories. And so what did you hope to achieve with this? Raising a greater awareness about people with disabilities and their families.

 

34:20

and if possible helping in a way in some way or another to improve the lives of those families and of those people with disabilities. You want to encourage people, families of any shape or size to travel around the world? I mean, COVID and technology means we can all work remotely in many ways. So would you encourage people to do that? No, not really. Just being honest, don't do it. Yeah, don't do it.

 

34:50

So actually, I was telling myself if someone were to tell me now, would you do that life again? I think I would shoot that person. To put it bluntly. To put it bluntly, I would look for a gun somewhere. Now one of my last questions I want to ask you is you said in the book that Nicholas is your biggest teacher. How so? Because in his own way, he taught me so many things. I had to learn on the job.

 

35:19

to be a mother of a special child. And I never had that experience before. I was never exposed to people with disabilities before Nicolas, so that was really for me a big thing. But I think we kind of grew up together. Nicolas needed care, provided care, and he made me understand vulnerability.

 

35:45

He made me understand resilience. So with him, I grew up to become resilient. I became resourceful. He made my life bigger. And for me to get to know other families was one of the best things for me because I didn't feel alone. And through Nicolas, I made some of my best friends for life and so I'm grateful.

 

36:15

That's really good. Anything else to add today? Well, I think I would really like, I still hear so many families living in really dire situations because they don't have enough funding for the kids. And I especially feel for aging parents. I am an aging parent. I turned 65 not long time ago.

 

36:42

And I still have things to do for Nicolas and with Nicolas, on stable housing and a circle of good friends around him that will keep an eye on him. So as you approach the end of your own, as you are facing your own mortality, to leave behind a child with severe disabilities, is weighing on your head, right? On your mind. It would be, absolutely, I think it would be. Yeah, so those are those.

 

37:12

those worries and I hope the government will make special provisions for aging parents like okay now that you've reached 70 you shouldn't worry anymore. We're going to take care of your child. And I know I eventually I need to go and CCLBC the funding agency to increase Nicolas funding because we are still taking care privately for some of his needs and just the idea of going to see them.

 

37:42

honestly makes me stressed, makes me feel stressed a little bit because they're going to say no, and then I'm like, no, I cannot take no for an answer, I need to insist again and because, you know, because I'm getting old and I don't want to worry about him while I get older. I don't want to worry about him when I'm 80. And that's the thing too. Like there are many families with, you know.

 

38:11

family members who have disabilities who are not well off and where do they get the money?

 

38:17

to help their children like Down Syndrome for example. You don't get a lot of funding for Down Syndrome. So, you know, there's people out there creating advocacy groups today that are, you know, screaming for funding whereas other, you know, disabilities do get funding. So, it's, we just got to keep pushing. We just got to keep knocking on those doors and making sure that voices are heard and money is there. So. Yeah, very true. So, as I said, Canada is.

 

38:45

one of the best countries. So we have in Canada, we have our DSP, which is for the long term saving. We have lots of school inclusion, we have inclusive education that is not available in many countries. So there are some good things, but at the same time, there are still some gaps to be filled. And what you said about families, I think here, like everywhere, families would really be the backbone for change.

 

39:14

We need to keep pushing, we need to keep talking to our MLA, to our MPs, to all levels of government that they need to do more and they need to do better. Yeah, absolutely. Well, I think that about covers it. You have been listening to DDA's Encouraging Abilities podcast. We cover many topics that affect the disability community, whether it's about inclusion, accessibility, and now traveling the world. You'll find it here. Our guest today has been Rachelle Roso

 

39:44

Chowinsky, I got it again. Thank you. Author of The Life That's Chosen Me from Russia with Love. It's her memoir about living in several different countries and moving around with her husband, Chris and her two sons, one of whom has severe developmental disabilities. It is available on Amazon if you wanna check it out. Rachelle, thank you for joining me today.

 

40:05

Thanks for listening, see you next time.

 

Ratnam Mathur is one of our valued group home managers who, like many staff at DDA, found a calling that pulled them off a defined path and into a career that meant so much more than money and fancy titles.  

 

TRANSCRIPT

Vital People – A Career in Caregiving at DDA

 

00:10

Welcome back to DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today we're talking about caregiving as a profession. To me, it's a profession that we as a society often take advantage of. We don't look at it as one of those jobs that you shoot for necessarily. It doesn't have the cache of doctor, lawyer, CEO, or what have you. But these jobs are vital, not just to the people DDA supports. They don't always come with the highest wage or even respect, which is wrong in my mind.

 

00:39

caregivers are vital to everyone in the literal world. At some point in our lives, if not now, at some point we will all need care, whether it's at a home because of illness or injury or a seniors home or a group home like the ones DDA operates, we are all going to be touched by this need and this profession. So I wanted to shine a light on one of the dedicated employees here at DDA and talk about who they are and what they do and why.

 

01:04

Joining me today is Ratnam Madhur. She is a long time employee of DDA and manages our Curzon Group Home that five people with developmental disabilities call home. Many of the clients we support in our 19 homes in Vancouver and Richmond have been with us for decades. I mean, they literally become family. So Ratnam, thank you for joining me today. Thank you, Evan. Thank you for inviting me. So just right off the top here, what got you started in this line of work?

 

01:32

Prior to coming to Vancouver, I taught in a school in Germany that had many kids from refugee families. They were from Albania, Romania, Turkey, and other European countries. Some kids were separated from their parents and were waiting for their arrival. A social worker was assisting the kids in their different needs. These kids were going...

 

01:59

through struggles to adjust a new culture in their relationship to other students. In their learning and doing homework, it was obvious to me that their families too were going through difficulties at home. Trying to cope with their status as a refugee, I spent time with kids and listened to their stories. I did not speak German, nor they spoke English, but working with some very simple words.

 

02:27

in English and German, and with the help of a social worker, we made enough connection to understand what was going on in their lives. These kids needed a lot of help to cope with pressures of studies and at school, as well as in dealing with their trauma and mental health challenges. It was challenging for me to win their trust and to create a helpful environment.

 

02:55

so that I could help them in their studies and sometimes their families at home as well. This first-hand experience for about three years gave me a unique perspective on empathy and value of community service. So when we moved to Vancouver in 2003,

 

03:18

I wanted to continue in this field at schools as special needs teacher, but my work permit did not allow me. So how come the work permit wouldn't allow you to be a special needs teacher? Because I was on NAFTA, I have a US passport, and they don't allow to work, the spouse was not allowed to work with kids and schools. So much so that I could not even take the courses. Really? Yeah. So take me, so you're in Germany at this point.

 

03:47

And you're helping kids with, no they were developmentally disabled? No, no, actually they called those schools as international schools and mostly that international is refugee kids from all.

 

04:04

over neighborhood countries. What sort of challenges did you face there with, like, I mean, obviously there was some language difficulty. Absolutely. They are also learning German, and you cannot survive there without learning Deutsch. So that was it. And you know, kids are really good at picking up the language. That was not an issue. The issue was the all struggle, they have come through that. Because from family, when people are arriving,

 

04:34

It's not the whole family coming together. It's one at a time. So that is a challenge. Sometimes kids come and the parents come later. So the social worker plays a really very very important role. So that must be some emotional challenges to deal with as well. Absolutely. Emotional, mental, like you know, to adjust with the culture and with the kids and you know, to be just normal.

 

05:00

And did you find that it was a very successful system over there in Germany? How was it similar to here? I think I don't know the system here for the refugees so much, but I was surprised. They have a very good system there.

 

05:14

a lot of resources in the school, especially for the kids. I don't know all over how they'd go, but working with this social worker, I came to know that they have a lot of resources. They help with kids like, you know, throughout their journey till high school, till they...

 

05:35

complete that. Where did these kids mostly come from? Romania, Kosovo, Albania, all neighborhood countries. Must be sort of interesting seeing the political upheaval in all these countries. Absolutely, absolutely. I feel sometimes in Canada we're quite isolated and protected. Yes, we are protected, that's true.

 

05:59

I feel safe to be here. Absolutely it is. Sometimes we take that for granted. You came from Germany to...

 

06:08

the United States and then to Canada? No, actually I got, I'm from India. I got married there. My husband was in Yale at, in US, Connecticut. Oh, he went to Yale? Yeah. Oh, wow. So my, so I stayed over there. And then I'd say about five years we moved to Boston and there I started working in multicultural school, in the bank.

 

06:38

moved to Germany. It's all because of my husband's job.

 

06:42

Okay, and how long did you live in Boston? That's interesting. Oh almost nine years really cuz I my my family spent a year in Boston This is an aside on this podcast now He's any of my dad today a second master's degree at Harvard when he was with the government Saskatchewan other so yeah, my husband was working for Harvard too. What does he do? Oh, he does research Okay, he was doing research that time nine years in Boston. What do what part of Boston did you live in? Oh, we were suburb Norwood

 

07:12

Almost 45 minutes from the main town. We were in Belmont, Massachusetts, near Cambridge. Those are very expensive, couldn't afford that. It was good. My memory was quite young, grade 4, grade 5, so my memory of Boston is quite good. Anyway, back on point. So you got to Canada and you wanted to keep working in this field.

 

07:42

What is your education and what is your actual expertise? I have done my masters in commerce and I have done my double graduate in English literature and B.Com English literature. Yeah Right that right then all my education is done in India

 

08:03

And yes, when I, you know, that is what I tell my kids too, that you never know what you want to be. Like, you know, after graduation, after this, there was some hollow in it. Like, you know, I worked in Boston, I worked in the bank. And, but still I need to know what.

 

08:24

So when I got this opportunity in Germany, working with a social worker, that time I felt that, yes, this was it. More of a synergy. Yeah. And so, I mean, you did your commerce degree and English literature, I mean, wow, you've got some education behind you there. And you worked in the bank in Germany, that was the only time you sort of used that particular degree? I...

 

08:52

I used that in Boston too, my degree, because over there I was actually looking forward to complete my CA. My credentials were all approved, so I was about to go into that direction. Oh, I see. But I think you raised such a good point, because about, you know...

 

09:15

what it is we educate ourselves with, what we think we should be chasing versus what we end up wanting to do. And so what...

 

09:25

I mean, you helped the refugees in Germany. And so what made you keep wanting to do this here in Canada? Yeah, when I moved in Vancouver, I was looking into the same field. But because of some restriction on my work permit, I could not. Then I started exploring the nonprofit organization. Like, you know, and, but with that, I want, because my kids were in school,

 

09:55

to get a full-time job. So during that time, I got employed by Indian Consulate. I was working there. That's here in Vancouver? That's here in Vancouver in downtown. And then I saw this posting, DDA posting. And I applied for it and that's what I got. What was that posting? Oh, it was Grandview CSW.

 

10:21

in a Granview Day program. That time it used to be called. So CSW was a community support worker, and that's where it started. Was that a full-time job when you started? It was, yes, it was a full-time. And was it what you were expecting? I mean, had you worked with people with developmental disabilities before? Not directly, but during this I had learned a lot about it. And when I started...

 

10:48

working. I even picked a few courses online and, you know, update, upgrade myself. Did DDA support you through that? Absolutely, it did. I think that very year I was very lucky to get involved with direct support worker course. That was our pilot project at DDA and that helped me a lot too. Oh, that's good. And so, I mean, when you applied for that, did you know much about DDA at the time?

 

11:18

But as on work, I started. But you knew, you knew this is the direction you wanted to go. Absolutely. That time I was really clear. Yes. I mean, yeah, that's it. I mean, you're the kind of people we want. People who make that decision in life, it's like, I'm here to help and give back. And so how? Sometimes I think that it's too late, but never late. Too late for what? What do you mean? I mean, too late to, at that age.

 

11:47

to see what you want to do in life. Yeah, well, you know, as long as, I guess, I guess as long as you're not dead, you can make a change. That's so positive. And so with that said, now, how long have you been with DDA? Almost 19 years this year. 19 years, so we're coming up on 20 years. That's unbelievable. Yeah, yeah. And so I guess, why is this line of work important to you?

 

12:16

Well, I have always found working with people with disabilities deeply satisfying to me. I want to be their voice where they don't. To help them think positively that they too have potential to learn new things, take part in activities just like you and me, and to be happy in exploring and enjoying everything in life just like others.

 

12:41

The joy of seeing our supported clients gaining confidence day by day, learning that new skills and enjoying themselves fills me with great satisfaction. So and that's it too. I mean you get that feeling of doing something good for the community, doing something for people who can't speak for themselves all the time. You know, we're all about...

 

13:09

self-advocacy and making sure that, you know, one of the big tenements of DDA is making sure our clients...

 

13:17

make their own decisions and make sure they're driving their own path. So being part of that must be, even from my position, it's a very good thing and a very good feeling. So given your experience of going back to Germany, going through all of your other jobs, what do you feel like DDA is doing right? What can we improve upon?

 

13:42

First of all, I will highly suggest everyone at DDA to watch our award-winning movie, Doing the Impossible. It's a deeply personal journey for many clients and their families. At that time, they were under institutional care that had its own damaging effects on the families.

 

14:06

After watching this movie, we can see how far DDA has come in its 72 years. We personally connect quality of service to the clients.

 

14:18

care we provide and witnessing happiness in the lives of people we touch every day. Yeah, that's the movie she's talking about rather the documentary is doing the impossible. It's something the Communications Department put together last year and it's since won three British Columbia Leo Awards. It really is.

 

14:38

the, it's what's called doing the impossible, the story of the developmental disabilities association where one woman, Leo LaPurdy took, you know, decided to buck the trend and keep her child out of institutions. You know, and 72 years later, here we are, you know, 500 plus employees and institutions in British Columbia are gone and community living is here.

 

15:08

DDA is all about and what this line of work means and the changes it can actually bring. So tell me about the people at Curzon. Tell me there's five individuals you support? Yes all five individual quite different in their age and cultural background. Very loving, full of life, music, dancing, partying is what they like, playing sports.

 

15:35

but also having a big heart to give back to their community. Big message they give out to the world is respect, love, peace, and they enjoy together. They are always ready to reach out to help others, whether it's shortage of food at the food bank or a natural disaster like floods or calls for peace in the world.

 

16:00

They are always ready and willing to help out in their very own way. If you walk in Richmond around Curzon neighborhood, you will very likely notice a client's name on Adopt the Street polls and even Richmond Dykes. They also volunteer at Meals on Wheel, delivering food to the seniors. One of the residents advocate for recycling used items.

 

16:26

Whenever he buys new clothes without being asked, he will get the old ones out from his closet to donate. A big, strong personality. So is that a big part of DDA programming? I kind of cloister myself a little bit at head office doing my thing, but when it comes to our clients in the community,

 

16:52

there's a big drive to get them involved in that stuff. I mean, they want to anyway, but I like, I find, you know, like with the food bank donations, there's, you know, that's sort of a cyclical, I guess seasonal as well. Yes, you know.

 

17:11

Clients are very busy in the community. They know what is happening around. That's the part our staff plays a role in our client's life. They communicate, they talk, they help them to read the newspaper, help them to understand what's happening around the world. When they are watching TV and news, they will ask question. Like, you know, I remember the first time

 

17:41

No.

 

17:41

fundraising for Pakistan flood relief. That was our first one. And that happened through the client. He was watching movie. He saw the person. He saw a kid who they showed that he's looking for food to eat or drink water. And he's the first thing came out from him is, oh, if he's here, I will take him to McDonald's and I will buy his lunch. So that spoke so

 

18:11

and we thought, let's think about it. And we talked to the clients and they were very eager to do.

 

18:20

a fundraise kind of thing. That time, I think Canada doubled whatever you give a dollar and it gets doubled. So that really was a big help. So how many times a year do you take your clients to do this kind of community effort stuff? Oh, we are always open. There is always something or the other going on. And they are a very big part of the city of Richmond, because city of Richmond also does.

 

18:45

you know, a call out for help for cleaning or for donation or, you know, helping seniors. So we are... Is that how they sort of the Adopt-A-Street? Was that you mentioned the Adopt-A-Street program? That was totally from Curzon. We explore for the voluntary work what they want to do. And it was a client's goal to do something in the city. So we explored on the website the voluntary work.

 

19:15

and that's how we got involved with that. And I noticed you do, you make sure you guys do a lot of stuff with Henry Yeo? Oh yes, yes. He's the MLA, correct? He is the MLA. So he knows our clients very well, and in fact he has just sent a city of Richmond, has sent individual name, thanking.

 

19:35

for the work they are doing. And that, like recently that's been, you know, helping cut back invasive plants and stuff? Yeah, yeah, they did that. And then helping the new mom with the food, you know, baby food and baby diapers. And they did a lot of work.

 

19:56

Now there's five people, they're obviously, they're individual, big individual personalities. What are some of the things that you come across in the house? Is it just like living with a family? Absolutely. Do they get into arguments and bicker with each other? How did it come for you and me? I'm still, you know. Let's not go there. That's true. But yes, that typical family and you know, sometimes working in the community.

 

20:26

that they all get bound to each other. They know each other so well. You, sometimes if a non-verbal client, if his jacket is given to somebody else, if the staff doesn't know him enough, they are the first one who will check and they'll say, no, that's not his. They are very, very sensitive and they are very attached to each other.

 

20:51

though they have their ups and downs. But you know. Now, you know, one of the issues with people with developmental disabilities, sometimes just behavioral issues, it's, is that, um,

 

21:03

difficult or easy to overcome in this setting? It depends on individual residents. And for all the behavior and all, you know, we have a support system with the help of seniors and mentors and assistant directors. They all, as a team, sit together, help with the GPs and, you know, professionals and sit together, talk, make a plan. So every behavior, we have a protocol

 

21:33

follow and there that's where we come to train our staff to follow the protocols and policy and procedure. That sounds good. Now how long does this particular group of five people occurs on? How long have they been living together? More than 30 years.

 

21:54

But there are some very young clients who have joined them. So the senior is almost 68 years old, and the youngest today, her birthday is, she is 27. So there is a big age gap. But that helps them to be, like, you know, to be bond with each other more. Yeah, that's nice. I mean, it's always nice to have, you know,

 

22:24

inspirational involvement would be kind of nice. So going back to sort of talking about this as a profession, what are some of the things you don't like about caregiving? What's lacking in society in your mind? I often find this occupation being labeled or tagged as caregiver, which I think actually undermines and undervalues this profession.

 

22:53

We ought to be considered as community builders and the life coaches that deserves far greater respect and encouragement from the society. I would also like to see men joining in this profession, like in nursing. Yeah, absolutely. You make an excellent point, community builders, and what was the other one you said?

 

23:19

Life coach, life coach, that was the one. I mean, that's great. I mean, we, you know, we do a lot of recruitment drive and stuff like that. And, you know, I post a lot of stuff on social media that's, you know, that talks about exactly the job you started off with, you know, community support worker. Maybe it's time we start rebranding that as community builder and life coach. Because it's precisely what you do. That really defines it a lot more. And in terms of the men, you're right.

 

23:45

I mean, let's be honest, historically, caregiving is always seems to fall into women, right? But this is a very rewarding job and we look after men, you know? Like, I don't know what the percentage of is it like a 50-50 split between men and women in our group homes? Do we try to do that? I, we don't basically think of doing that 50-50, but we are not close to. So as they come,

 

24:15

I think DDA is very open for male or female. We just want more male to join the sector. But as far as the clients though, like what's... Oh, clients are absolutely like, you know, it's a very mix. I can't say I don't know the numbers 50-50, but we do have women and male. Yeah, of course. And it's important to have, you know, men in the house as...

 

24:41

The female and male together, like you know. For staff, and I mean because they need that guidance and that mentorship regardless. So what would you say to men who are you know thinking about doing something like this, or even haven't even thought about doing something like this? Well I will say welcome, welcome to this real world. We need your presence, strength, and care to make a world a difference.

 

25:10

At DDA, we provide adults service basic training program. It's a very useful resource and training tool to get you started. This program was initiated by our executive director, Alana Hanren. I'm one of the instructor to teach this module. It prepares you to start working, making it easy and comfortably paced with you.

 

25:35

You should have no fears as we are always there to help, guide, and support you. So, men are welcome. Yeah, and like we talked before, there's lots of internal support, training. Absolutely. You know, I mean, you know, not to mention the other benefits of working for DDAs. We have a defined pension. We have a really good benefits program. What is the hardest thing about what you do?

 

26:04

Well, the hard, a constant need for advocacy for clients' rights and respectable inclusion in the communities. For example, it's not easy to access certain public places like beaches and washrooms. We also lack enough available funding to support staff to accompany the clients during overnight hospitalization. When needed. Oh really? Yeah.

 

26:33

Fortunately, through the advocacy work over the years, there has been a lot of improvement in overcoming these barriers. And the stigma has also declined, but it is still ongoing hard struggle in this profession, I think. Now, when you talk about stigmas, I mean, obviously you're out in the community a lot with the clients from Curzon.

 

26:58

Do you experience that stigma in the public? We used to a lot. And now also, it's not gone away. We can see the eyes rolling or somebody getting up and moving from that place. Oh, really? Oh, yeah. Yeah, yeah. We do see that. But not as much what I used when I came here. So now it is.

 

27:25

little bit better, but it hasn't gone fully. So from 20 years ago, you're seeing an improvement in society's acceptance? Yeah, of course it is. But it's still a long way to go. Yeah, inclusion is, that's an ongoing battle, absolutely. So.

 

27:50

A lot of people in this line of work have a personal connection to developmental disabilities like a lot of people on our board of directors have family or friends who have developmental disabilities. Is this true anywhere in your case?

 

28:05

No, not in my crea- no, no. It's not true in my situation, but there is a significant number of people who are struggling to accept the fact that they are parents of siblings of the special needs person. Yes, there may be people who are joining this field of employment to explore and to learn so that they can care for their loved ones better and meet their needs more effectively.

 

28:35

offer some great training programs and opportunities at work like orientation session, shadow shifts, e-learning, all of which is designed to help staff to learn and grow while they are on their job. And do you find the DDA is very welcoming for for new ideas and

 

28:57

things you can bring to the table and just improve the lives? Absolutely. From the time I have joined, any ideas, anything to describe that what is happening in the neighborhood or to changes, they are always open. So tell me about the job from an emotional point of view. Can it be difficult on you personally?

 

29:16

Well, this profession can be quite stressful at times, emotionally challenging and difficult. So what causes that stress? It's a work. It's not easy to, for example, motivating a client. Every day, motivational that, you know, giving yourself to that particular job is a lot asking. It sounds very simple,

 

29:46

lot of giving. So your clients, I mean, they can be as stubborn as the next person, so getting them to do something is difficult. We don't want them to do something, but helping them to, for example, getting up from the bed. Some of the clients are in that, that they don't want to get up from the bed. Oh, like my teenager. But there is a time for

 

30:16

health, we need to do that, right? So we get trained to help them to motivate and those are all things it requires. And it sounds easy but it's difficult. Well, I can imagine it being difficult because every client is different and they're gonna need different motivations and different ways to get them going. I mean, that said, do you think...

 

30:43

this job certainly requires a kind of person to have that kind of perseverance, to have that kind of patience and motivation in themselves. Absolutely. Needs a lot of patience and you know, but it said that we do encourage our staff members to learn about self care.

 

31:01

importance to educate themselves, available resources and help line. We support staff to be vocal at how do they feel, to share their concerns. We can get them the appropriate help they need.

 

31:18

And that, you know, again, we've got, you know, connections with our benefit programs and their family health plans. That's all in place. We're very, very well supported. When I see pictures of videos of Curzon Home, because you're one of the Group Home managers that sends me tons of content, which I love, I can't help but think...

 

31:42

how fun the job can actually be and where it doesn't actually feel like a job. I look at this and I go, they're all sitting around the dining room table drinking wine and eating Thanksgiving turkey. It's like, this feels like a home, which of course is the goal. But how do you accomplish that feeling from your perspective?

 

31:58

Well, that is our goal, right? To provide continuous support and assistance that fosters respect, independence, inclusion, and a higher quality of life for the individual that we support. My aim.

 

32:18

personally is to help them realize fulfillment in their lives of organizing necessary care resources and encouragement to reach their potential. The other goal is to train team staff so that they can continue to give their best care to our supported individuals as well as themselves. My final question, anything else to add to someone thinking about this line of work? Because it's like I said early on, it's...

 

32:47

This is vital work. This is really important, whether it's, because the last stats, the Canada numbers from last year said 27% of Canadians identify with having a disability, whether that's physical or cognitive or what have you. So having support at any point in our lives is absolutely vital. So what...

 

33:13

What else can you add? What else can you say to someone thinking about getting into this line of work? Yes, I wish more people can experience working with people with autism and other disabilities, to get a firsthand knowledge of what it means to face barriers and challenges, to live every day. Like I said before, this profession is not for everyone, but...

 

33:39

to others who genuinely want to reach out and serve, who are caring and compassionate, I will definitely encourage to choose this line of work. Now, age aside, would you do anything else at this point in your life? Wow.

 

34:00

I haven't thought about it. But I think I will continue to, as long as I can, to be in this field and support my clients. And we are so happy to have you. We're so very proud of the work you do, Ratnam. We have been chatting with DDA group home manager Ratnam Mathur. She has been telling us about her profession as a caregiver here at DDA. I said rather a community builder and life coach. Ratnam, thank you for shedding some light on who you are and what you do. And I know we all love working with you. Thank you.

 

34:30

Thank you, Evan, for this opportunity. You have been listening to DDA's Encouraging Abilities podcast. You can find us pretty much anywhere podcasts are supported, Spotify, Apple podcasts, Podbean, IHOP radio, Google podcasts, and more. See you next time.

 

Freeing Teresa, a new book by Franke James, her husband Bill, and Franke's sister Teresa talks about the challenges a family can face when it comes to the care and consideration of a family member who has developmental disabilities. On one side, is the freedom to choose, on the other is family dysfunction that is likely beyond repair.

He's a man on a mission. Meindert Hinlopen hopes to level the playing field when it comes to personal training. His company's focus is to help people with developmental disabilities get in shape and find their passion. Say hello to Spectrum Health in this Encouraging Abilities podcast!

 

TRANSCRIPT

 

Healthy People – Longer Lives

 

00:05

Welcome back to DDA's Encouraging Abilities podcast where we talk about anything and everything related to the disability community, primarily the developmental disability community. I am your host, DDA Communications Manager, Evan Kelly. Today is actually part three of our Accessible Sports series. We've done podcasts with BC SportAbility and Sirota's Martial Arts Academy. Today we're talking with Meindert Hinlopen. I hope I'm saying that correctly. Who is...

 

00:33

getting people with developmental disabilities involved in working out and working with him, a personal trainer. Now, Mindert is a graduate of SFU, he's a registered kinesiologist and NCCP certified coach with Special Olympics here in BC, specifically with basketball, hockey and track and field. Now, he spent the last few years on the care support team of Ben who has now joined us.

 

00:58

Ben was Mindert's first client. They started doing workouts to help improve his strength for Special Olympics floor hockey because Ben loves hockey. Who doesn't? He also collects hockey cards. We can talk about that in a bit. Now they progressed from doing the workouts in his house to going to the rec center. Now Ben is 26 years old. Mindert and the team are currently working with him to get stronger and faster for his Special Olympics.

 

01:27

hockey season. So, Mindert and Ben, thank you for joining me today. Hi, Evan. Thank you so much for having us on. I'm excited to get to talking and talk a little bit more about myself and what I do and Ben will say hi as well. Hey, Ben, nice to meet you. Nice to meet you. So Mindert, what got you interested to be involved so much in the developmental disability community?

 

01:53

I really owe it actually initially to my older sister. She was volunteering for Special Olympics when I moved out to Burnaby and she convinced me to come and volunteer for Special Olympics Burnaby as well and from there I kind of just

 

02:13

grew a lot more in the community, volunteered for a number of years at Special Olympics, and then about three, four, five years ago. So I kind of wanted a bit of a change in my current career and decided I wanted to try a unique opportunity where I'll have the chance to work with someone that I haven't worked with before. And that was an awesome chance for me to kind of dip into.

 

02:34

the developmental disability community where I get to work with someone that, you know, I haven't had a lot of life experience with, and I've absolutely loved it, and I will continue to do it probably for the rest of my life. So how long have you been working with the developmental disability community now? So I've been volunteering with Social Olympics since 2015, and then I've been working with Ben for three years, or how long? About three years, yeah.

 

03:04

So what's the feedback you get from working with this particular group?

 

03:14

Ooh, the feedback. Well, I think the feedback I get is... I mean, I'll say my feedback. My feedback is I absolutely love it. Like, I love working with this group and I find it so...

 

03:29

One of my passions I'll say is being able to work with people from the developmental disability community and share my knowledge with them or helping them any way I can with what I've learned in my experiences. In terms of feedback they give me, I hope the feedback is, what do you mean, do you like me then? What's the feedback?

 

03:54

feels good though. I hope to be back and that they like me back and so I guess we'll continue to see. So just from you from from your own personal perspective it's it's a very rewarding challenge to do this. Yeah, I say so. I mean, I always try to I always feel rewarding. It's a weird thing for me to say.

 

04:18

No, I don't know if I truly feel rewarded by it, but I just love it. Like I don't know if it's I feel a reward, I feel like I just love it. It's something I'm good at. It's something I enjoy. I'm never at a point where I'm like, Oh, I don't want to go to work today. I can always, I don't want to do it. If I don't enjoy it. No, it's the opposite. I love it. I never.

 

04:37

never worried about having to go see a client because I don't feel like it today or this or that. I know how excited they are and that excites me as well, I guess, is how I would put it. Now that's, that's, that's, that I definitely understand that working with the Developmental Disabilities Association, I often feel the same way. So did you start working with Special Olympics or did you just start working with clients with developmental disabilities? No, so I started with Special Olympics, I started volunteering

 

05:06

I think I said about 2015 for basketball. I did that for five, four or five years first. And then about 2018, 2019 is where I decided I wanted to get a little bit more involved. And that's when I joined the care support team of the band that's next to me, Ben. And that was kind of my first step into getting a little bit more involved in the community rather than just doing an hour, an hour and a half of Special Olympics coaching each week.

 

05:34

kind of going to that role and then from there kind of progressing to getting more clients. So I started like Spectrum Health, which is my company in the beginning of the fifth year is when I kind of launched it after working with Ben for two years, two and a half years and figuring out.

 

05:53

you know, maybe there's also a greater need for this for other individuals in the community wanting to work out and get, you know, personalized and specific kind of workouts catered towards them and their needs and their abilities. Now, does that mean you have a bunch of other how many clients in this community? Do you have

 

06:13

Prior, so I have now I have nine clients in the community. Prior to starting, I just had Ben. But prior to starting, I just had one that was Ben and then talking to Tim and his parents. And they both agreed that they liked it and they thought there was definitely usage of other families and individuals wanting to use a service like this. And that's kind of where I.

 

06:37

I started it, so I started in January and then have gotten about eight or nine clients now. So you started technically in January this year? January this year, 2023. Okay, good. So hopefully we can get the word out. Because I mean, the health of people with developmental disabilities is so important. I mean, they're living longer, they're having more involved lives, and this can only be a huge benefit.

 

07:06

Yeah, exactly. I think, you know, as, as we try to promote more independence within that community, I think physical activity is something.

 

07:16

that everyone can have some independence with. And I've definitely started to see it myself. And Vancouver in the Lower Mainland is such an amazing place. We have so many awesome rec centres and other facilities that people can use. So I thought, you know what, if I can get people comfortable, used to it, independence, you know, there's more likely to go and be physically active on their own. So there's a huge push that independence is in the community.

 

07:46

like a physical activity aspect. Yeah, I just, I see this as a growth industry. And I like, you know, after being with DDA for a number of years now, I don't really see that. And that's what piqued my interest in wanting to talk to you is because no one seems to be doing this. So, you know, kudos to you because this is a real growth industry. So that said, what do you think has been lacking for people in the developmental disability community when it comes to health and exercise?

 

08:14

So yeah, I think the biggest thing that I see lacking is having done Special Olympics for a number of years, I got to witness what group activities meant. And there's quite a few, but there's not enough yet where those group activities, are they not frequent enough or they can be smaller in size. So for my program at Special Olympics, there's 30 to 35 different athletes show up.

 

08:44

They're all so varying in ability that...

 

08:48

I'm trying to accommodate everyone, but in the end, people on the higher or lower end are obviously going to get left out or aren't going to get out of it as much as they could had it been a smaller group setting. And I think that's what kind of really inspired me as well is to try to make it more one-on-one or super small group settings to really focus and allow them to get the most out of their own potential in a way. And that's kind of

 

09:18

approach like I want to work just one-on-one or you know do a small group class so I can really focus on everyone and focus on their needs and focus on how I can best you know get them to reach their potential yeah and at the end of the day not everybody wants to play on a team right exactly and that's that's a big thing too right it's very intimidating

 

09:39

to try a sport you've never played before. And it's super social as well because there's 20, 30 people showing up any given time, especially in the lower mainland sports. So that's something I've also seen as well, is slowly getting them comfortable with exercise and then approaching the idea, like, oh, now that they're feeling comfortable doing these different exercises, would you ever think about doing Special Olympics? And I've luckily had the chance to get one or two of my clients thinking about doing Special Olympics or Special Olympics in the future as well.

 

10:09

because they've started to feel more comfortable doing exercise. I've showed them how to dribble a basketball and now they have belief in themselves that they can dribble the basketball. So it's less intimidating of a barrier to get there as well. Well yeah and besides your services and besides Special Olympics, where can people with developmental disabilities find personal training or can they?

 

10:36

They can find personal training. I think if you went to any studio or gym that had personal trainers on staff, you could get that personal training for individuals as well. The whole idea of my service is that I'm mobile and I'm understanding that it's always tough for people to go to a gym or a studio for taking transit or a ride.

 

10:59

So I said like, hey, let's cut that out. Why don't I come to you? I can meet you at your house or I can meet you at your apartment gym or I can try to meet you at the community center like that's closest to you so we can walk over. Because again, I wanna get them comfortable on their own doing it. So my whole goal is if we work out at home a couple of times with me and then hopefully one other day of the week, I'll make you do exercises on yourself. You know your space, you know the equipment you have at home

 

11:29

I've had some success with that where I'll take the clients doing the exercises during our sessions and I'll ask them to do it two or three times a week on their own. And I've had a lot of success with them. At their house, they'll send me a screenshot of their Apple watch and it saves 20 minutes, 30 minutes of resistance or cardio training of what they do for the exercises that we do. They're doing them on their own now.

 

11:54

What do you what do you when you say you're mobile? What do you actually bring to the client? Obviously, you're not going to bring a gym with you. But what do you bring in? What do you get them to do? So I bring Like yoga mat, I'll bring a bunch of bands. I'll bring some hurdles. I'll bring some cones

 

12:14

I really try to tailor the exercises towards what they would like. So if they have specific goals in terms of some of them are doing, like Ben, doing Special Olympics sports and he wants to get stronger for hockey or faster for hockey. So we're going to do stuff that's going to focus more on that. If someone's just looking to generally move and get a bit better, we'll do the exercises and tailor the workouts towards that. But for me, I basically bring this, I just comment it's pretty funny. I show up with this giant duffle bag.

 

12:44

full of yoga mats, bands, stone turtles, we have some like weird little exercise ladders. So all these kind of smaller portable exercise equipment that we can use rather than big heavy weights. We don't need those big heavy weights especially when we're starting to drive a comfortable movie. We can do a lot of body weight, a lot of squats, planks, sit-ups, a lot of stuff we can do and again my whole idea is the last equipment

 

13:12

I use and the more likely I can get you to do exercises on your own. So if I have to do a lot of the stuff you do with equipment that you don't have at home it's going to get very hard for me to kind of get that client to do exercises on their own. So is a lot of your exercise primarily to do with cardio and conditioning and not so much weight training?

 

13:34

No, I would say it's a big mix of both. So I would say like a lot of some of it's cardio, but a lot of it's like resistance training. So muscle training, a lot of it's like balance training, making sure they have the ability to get balanced for themselves is a lot of like full prevention. Yeah, working a lot of my lower body strength, core strength, and then some cardio and conditioning in there as well. The cardio and conditioning comes into more how I structure the workouts.

 

14:02

So doing exercises back to back with less rest will keep that heart rate higher. And that's what that client will kind of get that cardio style of workout. Right. Now I'm going to switch over here a little bit. Ben, I'd like to talk to you if that's okay. That's fine. Tell me a little bit about yourself, Ben. Well, let me start.

 

14:32

What do you like to do? I like sports. What sports do you like? Well, I like hockey, football. Eventually I'm going to enter another sport in Special Olympics. I'm just hockey. So tell me a little about your hockey in Special Olympics.

 

14:58

uh... well we do stuff like drill like it wouldn't the proper on the call and i play on right wing right wing oxley you're you're you shoot right i'm a lefty i used to play uh... uh... left wing in hockey so it did this is is this floor hockey or is this ice hockey

 

15:27

Oh, I see what you're saying. Okay, that's cool. So how long have you been doing that? I've been doing it. Well, I've been doing it for just over a year. So what do you like about it? Um, it's it enabled to connect with new people. Um, and it's just really fun as well. Absolutely. It's really fun. How many people are on your team? Do you know? Um,

 

15:56

There's how many, 25, 30? Yeah, 25 or 30 people. Awesome, how many? They do like tournaments, a couple tournaments a year as well. That's awesome, like how many, are you a good goal scorer? Not yet. You'll get there. Who's your favorite hockey player right now? I'm going to say McDavid. Oh, he's amazing to watch, isn't he?

 

16:25

Yeah, he is. That guy is a magician. But you must, are you a Canucks fan? Are you hopeful for the new Canucks season? Yeah, I'm a huge Edmonton fan, but I'm a Canucks fan even because I live here, right? Yeah, I grew up in Edmonton, but I have to tell you, I've never liked the Edmonton Oilers. I'm a diehard Canucks fan. Oh, wow. But they're gonna need a miracle if they're gonna get anywhere near a cup, I think.

 

16:53

I actually have confidence for this year. They got some good players in the offseason. Yeah, yeah, we'll see how this goes. It's about rebuilding, right? Yeah. So what do you think about Mindert as a trainer? Um, he feels a good job. He does a good job. He's getting you prepped for the season? Yeah. When does your hockey season actually start?

 

17:17

on the end of September, the first practice. Oh, coming up real quick. So so what are you doing to get in in shape for that? I'm doing stuff like legs, leg presses. I'm walking walking. I'm outside my house like down down street and back. I'm doing I'm using dumbbells. That sounds good. Black hole, black hole.

 

17:45

Yeah, a lot of pulldown. Also, the exercise is in the gym. So you guys, which gym do you like to go to? We go to his apartment gym. Oh, okay. So he's got a gym that comes with the suite and stuff. That's kind of convenient. Yeah. We also go to a gym here in North Burnaby called Willingdon High Park.

 

18:09

There's a community center there that we go to as well. Well that's good. So there's lots of stuff to throw around. So besides hockey, what do you like to do? What do I like to do? Collect hockey cards. Oh, that's a good one. You got any really good valuable ones? Well, I got McDavid's. Of course. And Jack Eichel. And which one?

 

18:38

And Eichel. Oh, Eichel. Oh cool. That's cool. Nice. You're my first cup here. Yeah. So you've got a, you'll have to get a new one with Quinn Hughes with his captain's jersey. Yeah, I know. I also own like 20 NHL jerseys. Really? Wow. Yeah. I have one. Twenty is a lot. Yeah. Can you list a few? Pardon? Can you tell me about a few?

 

19:07

Um, well I have a McDavid, the M&M's orange jersey from McDavid. I have a Pedersen All-Star jersey from the first All-Star Game of Them. And I have a Hughes jersey, Betzer, four-bounded from the Canucks. What do you think of Betzer these days? I'm not really impressed. Yeah, he was like the great hope.

 

19:36

hasn't really transpired as it means good don't get me wrong but yeah we'll have to see how he does this year first year he's again injured a whole time yeah yeah he was and left the door to the bench open and oh that was brutal wasn't it yeah that looked pretty painful yeah well that's great so what do you what do you like to do when you're just at home Ben

 

20:07

So you really are a rabid hockey fan is what you're trying to tell me. Yes. That's good. Cause the season's coming up and getting excited. I'll get my own Jersey on. So we'll see how everything goes. So I'm going to, I thank you for talking to me, Ben. I'm going to switch this back to mind dirt now, if that's okay. I know. Perfect. All right. Mind dirt. So, um,

 

20:35

In your view can most people with developmental disabilities use systems at gyms without too much of an issue or do you some because obviously Machines like hammer strength and things like that are pretty much designed for typically developed people Do you run into any issues with that or do you even use machines or is it more of a freeway thing?

 

20:59

I like the idea of free weight, like I said, balance, which is an important thing that I want to work on for fall prevention, as well as just overall making sure they're having a stronger level of coordination. You don't quite get that with machines. However, I do like to use machines to start to show them how to move, like how I want them to actually fold with their leg, or how I want them to use their arm in a certain way, because machines are very nice for that.

 

21:28

So for me, the biggest thing is, you know, progressing or adapting the exercises, the individual's ability. So if I feel like, you know, they're ready for exercises that require a higher degree of coordination, it's more free weight. If I'm understanding that they're not quite there, but they're definitely have the strength to, you know, move them around, I'm going to try to get them on the machines a bit more. In terms of like being set up, I mean.

 

21:58

You know, there's certain limits to each machine, but for the most part, they're well set up for everyone. There's a lot of adjustability because, you know, some people are taller, shorter, longer arms, shorter legs. So the machines themselves have a lot of adjustability. And that's why, as Ben mentioned earlier, like we love the light press machine. It's a great way to get the legs super strong, move a bunch of weight. That doesn't require the same level of like coordination right now with a heavy squad or something, but you can get those.

 

22:28

get those legs feeling like they're doing a nice heavy squat but in a nice controlled motion. So when you're a registered kinesiologist, you've done all the education, and like within that education is there something that, are there any courses that are geared toward working with people working with people with developmental disabilities or is it just a general education that way?

 

22:51

No, it's definitely more of a general education and even then I say it's a lot of like learning on the job.

 

22:58

Again, it's very hard to teach someone out of a textbook and in the classroom how to teach someone else how to move, how to, you know, how to do certain exercises. So that's where I graduated from SFU. I had the chance to work as a kinesiologist in a studio for two or three years as a personal trainer and as a kinesiologist. And that's where I kind of learned.

 

23:23

how to change exercises according to each person's ability. And as a kinesiologist, I work with a number of people from like ICBC who had motor vehicle accidents.

 

23:35

And that's kind of where my chance to really learn how to progress and regress exercises based on what they could do because they had physical limitations based on their pain or their injury. That's where it was really awesome for me to understand like how to progress and regress exercises to fit the individual. And I kind of carried that over when working with Ben and working with a couple of the other clients is how I can adapt exercise best for them.

 

24:03

I wish there was more coursework on how to work with people, but physically also how to work with people with disability. But any kind of coursework you would do, that would be on your own. I do know that there is like an online or virtual course that you can do that allows for individuals to have like autism exercise certification.

 

24:29

as well, but nothing like directly out of school in terms of working with people with disabilities. That's kind of something you have to do on your own. Yeah, I'm finding that. And have a chance. Yeah, I mean, I did a podcast with Michael Serrata, the guy who owns Serrata's Martial Arts Academy in Vancouver and Richmond, and he does a lot of work with people with developmental disabilities as well. If Ben, if you're interested, he does a really great service. And then what I found with him too is that...

 

24:57

Any training or instruction in that respect was something he had to do on his own, much like yourself. So it seems like there might be a growth industry, or a growth at least in the education system, when it comes to people with cognitive disabilities. Because there's a lot of people out there who could use that kind of service. Yeah, I think you're starting to see more and more of it too right now that independence is a lot more focused on. Yeah.

 

25:26

But yeah, I would say it's the same thing that Toronto said as well, with a lot of learning on my own and figuring out what, you know, how best I could do it, I guess, is what I've learned from that. Yeah, and I'm not saying that there's a silver bullet solution to that, but it just seems like with inclusion and community living being the driving force these days, which is great, you know, having more of that support through our education system might be a good thing.

 

25:55

Exactly and you know I'm solely in the background and working on trying to partner with like the different municipalities of trying to you know host because each of them have their own like Burnaby has adapted programs um each of them have their own and you know maybe getting them a little bit more.

 

26:11

attention or you know providing people with a little bit more insight how to use these resources so there's different municipalities are trying to offer them more um i think the biggest thing is people just don't know where to start you know they've never been in a gym before one it's very intimidating but two how do you learn to do all these exercises without someone trying to help you exactly exactly i mean even even i go to a gym and sometimes i don't know what i'm doing you know i do the best i can

 

26:38

But at the end of the day, here's the sort of sad reality is that hiring a personal trainer costs money. Yeah. And we all know that people with disabilities, their life already may cost more than a typically developed person. So that becomes an issue. Talk to me about how people can afford your services. Yeah. So again, so luckily I early on...

 

27:03

got some insight and help through CLBC, Community Living BC, and talking with them, individuals are eligible to use their respite funding if they're approved by CLBC for my services. So that's like one way that it can be cost effective for.

 

27:22

for people, which is super nice. I'm starting to slowly try to expand as well into like younger teens or sorry, older teens and they'll still be eligible for like autism funding. So getting approved for like autism funding units. The other ways for like paying for my services is I recently decided that I'm trying to do a new service and that's where I understand that people already have a bit of a healthcare team on it

 

27:52

own or they have already had respite workers. So I call it like my hands off approach and that's where I meet with someone just once to go over and assess.

 

28:03

how they move, how it's going, and then trying to set up like an online platform for them to use. So my example would be like, I have an online training tool, we meet once, I figure out, okay, here's what I feel like you could improve, here's how we can make it work. And then I use like an online coaching tool to set up workouts for them to do either on their own if they have the capability or with a current respite team they already have in place.

 

28:34

to make it as accessible for everyone as possible. So I'm even looking to do smaller group training classes throughout the city, in different municipalities, so people can come at maybe a slightly reduced rate. So I'm looking at that. And then I'm looking at the community health and safety services. So I'm looking at that. And then I'm looking at the community health and safety services.

 

29:02

um having yeah like like like i said like set up with community gyms or so community centers that already exist of having a service like this with other coaches that can do it as well so so they have the chance and i think like you said it's the movement for independence comes like just training people on figuring out or

 

29:23

training people on how they can help others approach this. So if there's other personal trainers out there that are trying to do something similar at their gym or the studio, how I can best direct clients towards that local gym or studio close to them. So, I mean, the possibilities are endless in terms of what Spectrum can do, but for me, it's just trying to provide my service to as many people as I can.

 

29:51

because I know how big of an impact it can have on on their lives. That's staying healthy. That's key. It's key for anybody. So how do people how do people reach you? So people can reach me easiest way to do it is through my website, which is MB spectrum health.com. And that way they can read all about my services. And on there is also my contact information, my email, my phone number, there's like an intake form there is

 

30:20

Um, there are some like referrals as well, or, you know, past clients, what they said about my service and what they've liked about it. The other way you could do it as well is I have some brochures that I printed off and dropped off around the city. I'm going to drop them off at the CLBC has them at each of their offices. I'm actually, hopefully to come go to DDA and drop off the brochures. Please do.

 

30:43

So there'll be some brochures around, but easiest way is to just to look me up online. That's again, mbsp And there's a website that has all my information there and my phone number. Awesome. I think that about wraps it up. Minderth and Ben, you have been listening to DDA's Encouraging Abilities podcast. My guest today has been Minderth Hindlopen. Minderth is a heavily involved in the developmental disabilities community. He's a kinesiologist and coach for the Special Olympics PC.

 

31:12

He set up a mobile personal training business for people with developmental disabilities called MB Spectrum Health. He wants to help them reach their health and fitness goals and create a literal level playing fields for everyone. You can find more information at MBspectrumhealth.com along with Mind Dirt. Of course, there's one of his clients, Ben, today who loves hockey. He was here to help champion what Mind Dirt is doing. I thank you both for being here today. Thank you so much for having us.

 

31:42

Thanks Ben, thanks for listening, see you next time.

 

For many, success is defined by job title and bank accounts. For Jamie Dri, overcoming crushing anxiety and living independently means she is on top of her game. She has been a part of DDA's employment program, Jobs West, for the last 15 years and has no plans to stop! She shares her lived experience in this episode of the Encouagring Abilities podcast.

 

TRANSCRIPT

 

Jamie Dri Success Story: Celebrating 15 Years With Jobs West

 

00:05

Welcome to DDA's Encouraging Abilities podcast. I'm your host, DDA communications manager, Evan Kelly. Here we are in our comfy little sound studio, DDA head office in Richmond, BC. This is our 29th podcast. And fortunately today we have a long-term client of DDA talking to us about her lived experience with some of our programs. We have done many podcasts with advocates and experts, but not always someone who brings their lived experience for us to hear.

 

00:33

So joining me today is Jamie Dri, who's been involved with our Jobs West program. And not only that, she's celebrating 15 years of working with our Infant Development Program, which is absolutely amazing. It is a huge success story, but it hasn't always been that easy, of course. So thank you for joining me today and making the effort to come to head office and do this face-to-face, because we don't often get to do it, sometimes thanks to COVID, but I'm really happy to have you here. Thank you.

 

01:00

So right off the top, Jamie, tell me a little bit about yourself. Well, I live on my own in Vancouver and I have a job working with kids. I love painting, reading, and I'm a huge fan of Shania Twain.

 

01:21

Shania Twain. I'm a musician myself, so I like to talk about music a lot. One of my questions was going to be what's your interest in music? So what's your interest in Shania Twain? Not only do I love her songs, but I love her as a person. I think she sets a very good example for everyone.

 

01:47

out there. After all she's been through, she's, I find her to be a very strong woman. Yeah. Just a good all-around Canadian. I adore her. Yeah, she is very good. So how did you start with DDA and Jobs West?

 

02:05

Well, I was referred to Jobs West by a social worker 15 years ago. And I said I wanted to work with kids and that's when I started working at IDP and I've been working there ever since.

 

02:25

15 years is a long time for anybody to be at a job. I don't think I've held a job for 15 years in my entire life, to be totally honest. I've been with DDA for about four years now, and really quite enjoying it. So tell me what you like about working with kids.

 

02:43

I just love kids. I think they're so cute and they're sweet. And I just love them and they come up with the funniest things to say sometimes. Absolutely they do. So how many days a week do you work at IDP? Three days a week, Tuesdays, Wednesdays and Fridays. Do you have another job outside of IDP? Right now it's just IDP.

 

03:10

And you've mentioned you like working with pets. Yes. I love animals and actually I used to do work experience at a doggy daycare about 17 years ago. I played with the dogs and fed them. And I remember there's one little dog who

 

03:39

He got pretty attached to me and every time he saw me coming in he would run up to me with his little paws in the air. I'm a dog lover myself. I totally, I totally get what you're talking about. I don't have one right now. Do you have any pets at home? I have a cat. Oh, do you? Yes. She's with my mom right now. What's her name? Her name is Abby.

 

04:01

Abby. Yeah, I call her Abby-dabby-doo or abber-dabbers. Abber-dabbers? Yeah. Is Abby a tabby? Yes. Is that right? Yes. I guessed it. I had no idea. And so do you still take part in a lot of, pardon, or drop in the center these days? Yes, I do. And what do you do there? Is art a big part of that for you?

 

04:28

Um, yes. I haven't been to art lately, but I'll work on that. Yes, we need more art. So tell me about a day about working at IDP. What do you do? You get there and then what happens? Well, on the days that I work with the kids, which is once a week,

 

04:57

First we have about an hour of free play.

 

05:08

So I play with them, I talk to them and get to know them. Then we do clean up and snack, and then circle time and some songs. And then on the other days, I clean the toys. I'll clean the toys, okay. Yes, they've gotta be sanitary, I suppose. That's pretty important. Yes. And how many hours a day for those three days are you working?

 

05:36

Um, three hours a day, so that would be nine hours in a week. That's a nice work week. Yeah. That'd be all right. Yeah. So I'm also been told that you, you know, we'll switch gears a little bit here. I'm told that you've got an indigenous background. Yes. Can you tell me about that a little bit? Um, yes. My dad was part indigenous. Uh, Cree, I think.

 

06:06

I think. Interesting. That's a little, I think that's a little Eastern from here, but that's kind of kind of interesting to know. What do you want the community to know about you?

 

06:19

What I want the community to know about me is... You can take your time. Like again, there's no rush for any of this.

 

06:30

Well, coming from someone who used to suffer with such terrible anxiety, not so bad now, but I would say anything is possible if you set your mind to it.

 

06:52

That's amazing. Can you talk a little bit about your anxiety and how that was for you? Because you don't seem like you have that much anxiety right now. And this is a very strange setting for anybody, really. Well, before... I would get pretty bad panic attacks.

 

07:18

years ago because there was a lot going on in my life that needed to... I needed a different situation, I'll just put it that way. Understood. Yeah. And how are you doing now? Good. Good? Yeah, I'm doing really good. Excellent. So you're living on your own now? Is that 100% living on your own or do you have some help? I'm living on my own. I've been living on my own for the last...

 

07:48

four years, but I've had LifeSchools workers help me out. I see my LifeSchools worker that I have now, I see her on Thursdays and whatever I need help with, she's there. And that's great. And you now live...

 

08:11

It says in 2016 you went back to live in Vancouver. You went to live with your mom prior to that? 2016? I was actually already living downstairs from my auntie with my family. But I used to live with my mom and brother in Surrey for a couple of years and then we moved back to Vancouver.

 

08:41

That was around 2011 or 2012 or something like that. You prefer living in Vancouver? Yes, yes. It says, I understand you live in a co-op now? Yes. Now, my understanding of co-op is that residents often have to sort of give back a little bit. Like I have friends who live in a co-op and they have to like help.

 

09:07

build fences or something like that to help with the overall community? Is there something like that in effect or do you just do your own thing? Well I've joined some events. Any opportunity I get I participate in the events.

 

09:28

Just community kind of events like are they barbecues or? Yes, a barbecue. I've been to a magic show. I've been to a yard sale. Cool. Did you buy anything? Yeah, I bought a little angel bear from my room and a little Christmas mouse. Well that's good. Christmas is coming.

 

09:58

So how does it feel to be living independently? You're pretty much on your own and you have some help from time to time, but you're mostly doing your own thing. How does that feel? I love having my own place, especially in a co-op where I can stay forever and I can decorate it and make it my own. Is it a one-bedroom place you're in? It's a one-bedroom.

 

10:28

in Vancouver that can be really expensive so I'm glad you've got some place safe and sound. Yes, me too. Let's go back to Jobs West. You started with Jobs West something 15 years ago you were saying or 16 years ago? It was about 15 years ago. And it's only been IDP that you've worked with with that program because I know we've got clients in a variety of different things. First...

 

10:56

It was, yeah, definitely IDP. I've also worked at Grandview. I started working at Grandview DDA before I moved into my own place, a few years ago.

 

11:22

And I was cleaning, there I was cleaning the New Zealand room. Do you consider yourself a self advocate? Um, I think so. Someone who thinks it's important to stand up for people with developmental disabilities. Yes. And what would you say to someone who's trying to be independent like yourself? Um,

 

11:52

Well, I would say to them.

 

11:58

I would say if you want to live independently, but you're feeling scared to make that move, it's totally okay to feel scared because change can feel scary at first. Don't think that you have to feel a certain way. I think that was very well said. That's extremely wise. It's okay to feel scared.

 

12:26

And how do you feel about DDA? Have they been really supportive of your goals?

 

12:33

Yes, DDA has been very supportive. I got my job through Jobs West and CAP has helped me in so many ways over the years. I've learned life skills like cooking, cleaning, speaking up for myself and budgeting and I've also had lots of emotional support. Oh that's good, that's good. So

 

13:01

Like has it been hard for you to get to where you are today? Yes, it hasn't been easy. I've worked hard and pushed through a lot of anxiety and obstacles that life has thrown at me. However, with the amazing support of many people in my life, DDA being one of them.

 

13:27

I was able to overcome it and it led me to where I am today. Now going back a little bit, did you grow up here? I lived in different cities, but yeah, I grew up here. So you were born and raised in the lower mainland? Yes. Essentially. And where did you go to school?

 

13:56

Oh, I went to many different schools. My, I went to high school at Pine Tree in Coquitlam from grade 9 to 11. And then, and then after that.

 

14:21

I returned home after being in foster care and then I went to Centennial and graduated from there. Nice. Yes. Now, you were in foster care growing up. Do you want to talk about that a little bit or is that too much? I won't get into that. Okay. That's okay. But at the end of the day, you did end up going back and living with your mom, correct? Yes.

 

14:50

What are your plans for the future? Do you give that a lot of thought? I know you've been with IDP for 15 years, but maybe you'll want to change or something like that? I definitely want to stay with IDP until I retire. Until you retire? Yes. That's like 40 years from now. I ain't going anywhere.

 

15:14

But otherwise I'm not really sure right now. So far I just want to keep doing what I'm doing. That's good. I mean, you're working three days, nine hours a week. Do you want to increase your work and work more? Or you're kind of happy with the way things are right now? I'm happy with the way things are right now. I might think about.

 

15:41

increasing, getting more work. Mm-hmm. Yeah. That's good. I mean, a little more money's not going to hurt anybody. Yeah. And so, when you're living on your own, you're making your own food. I'm trying to expand even my own kitchen skills. And what's your favorite thing you like to make yourself?

 

16:03

I really like this pasta, there's not a particular name for it, it's like a stir fry. So I add like zucchini, peppers, other lots of vegetables. And I add

 

16:26

The really thin, the angel hair pasta, my favorite kind of pasta. And then sweet and sour sauce. Oh, sounds like a very Asian dish. It is good. So what do you do on weekends? Usually I'm with my family on the weekends. I see my mom and brother. Oh, and they're in Surrey? Right? They're in Vancouver. Oh, they're in Vancouver now. Okay. Yes. And how old's your brother? He's...

 

16:57

32. So he's older than you? He's younger. He's younger than you? Yeah. And what do you guys like to do on the weekends together? We just hang out. One of the things we do is a Schneidwein karaoke. Oh, give me a sample. I don't know if I want to put you through that.

 

17:26

Oh my gosh. Where do you, so you just, do you do Shania Twain karaoke at home? Oh yeah. Yeah. As an actual machine or you just sing along? I just sing along. Are you a good singer? Sometimes. You don't have to be bashful, that's okay. That's pretty funny. Who are some of your other favorite music artists? Um, I mostly listen to countries. So like Faith Hill.

 

17:56

Leanne Rimes. That's going back a little bit too actually. Yeah, Trisha Yearwood. Those are some big names. But it's mostly Shania Twain. Keith Urban? Do you like Keith Urban? I don't listen to his music much. He's got some, he borders that...

 

18:16

Kinda country, kinda rock pop, so I'm not a big country fan, but I like what he does. And I do like Shania Twain. Respect to Shania Twain, for sure. Yes. What about, like, what movies, what movies do you like to go see? Or maybe you don't like seeing movies. I love movies like Titanic. That was the last...

 

18:39

the last movie I went to see with my cousin. It was in 3D. Oh wow, Titanic in 3D. That's a little bit out of the theaters for a while now. What about James Cameron's other big things like Avatar and stuff like that? No. You don't like those? No? No, not really. Alright, fair enough. So I think we can almost wrap this up. We're doing pretty well here. Is there anything else you'd like to...

 

19:07

Tell the public about being a self advocate, about doing your own thing independently, and being a worker, and being dedicated to what you're doing? I would say, like I said before, that I did suffer with terrible anxiety, and I came a long way from that. Absolutely. I mean, like where I am now. So...

 

19:35

I would say, again, if you're feeling scared, that's totally okay. Just feel what you're feeling and allow it. And if I could do it, you can do it. So how did, I'm curious about anxiety because I mean, everybody feels anxiety on some level. Yes. How did you work through the harder stuff? Well, I've had lots of people that talk to, that have been a great help to me. And...

 

20:06

Yes, there were some things in my life that caused my anxiety to get so bad and out of control that I won't get into details but sometimes I'm not even sure how I made it through all that. But yes, but yeah I have I've had a lot of support though.

 

20:32

Well, that, I mean, to me that just deserves a ton of recognition. Anybody who can recognize that they've got something they need to work through and accomplish that is unbelievable to me. So I doff my hat to you. Like, well done. That's very, very impressive. Thank you. So I think we're about done. I think you've answered all of my questions brilliantly. And then we can go post this online.

 

20:58

You've been listening to the DDA Encouraging Abilities podcast. Our guest today has been one of our great success stories, Jamie Dri, who has been involved with DDA and JobsWest for over 15 years and is actually celebrating 15 years working with our infant development program as proving that independence is possible if you work hard enough at it. Jamie, thanks so much for being here. It's been great to have you. Thank you. Thanks for listening. We'll see you next time.

 

 

A chance meeting on 'X' has DDA chatting with Dr. Nathan Keates, in London, England about his Ph.D. thesis that postulates improv theatre has a benefit for autistic people when it comes to managing anxiety and more. 

 

TRANSCRIPT

 

Managing Anxiety in Autism: Going Full Improv with Dr. Nathan Keates

 

00:06

Welcome again to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. In today's episode, we are talking about autistic people. And through the power of social media, I managed to contact Nathan Keates. They're a lecturer and early careers researcher in the field of critical autism studies and the University of Sunderland in London about their PhD thesis. Now this is kind of cool. It's the power of social media again. Through a tweet, I'm not sure if we can still.

 

00:36

call it that, through an X, I'm not sure now. So he had posted a picture of themselves proudly holding the copy of their PhD thesis. Now, the thesis completed at the University of Kent's called Going Full Autistic in Improv, Reduction in Anxiety and Other Benefits. And that's exactly what it says. Improv as an improv comedy and how that might positively affect anxiety and other autistic valued benefits.

 

01:05

not only is Nathan a scholar, but they also previously worked in theatre. So Nathan, thank you again for taking the time to join me today from across the pond. That's alright, you're very much welcome. I enjoy talking about this. Now that's great. So just right off the top here, tell me a little bit about yourself. Well, as you said, I'm a lecturer at the University of Sunderland in London.

 

01:32

That's in health and social care. As you've said, my research and such is in critical autism studies and I have previously taught that at the University of Kent where I was doing my PhD. Previous to that, I've got a background in theatre so I have taught improv for quite some time, probably going on 17 years. So the PhD was basically trying to stitch my life together.

 

02:00

in an interesting way. So in 2007 I went to the United States of America and I talked some improv in a summer camp there and that was a wonderful experience, so wonderful that I thought I had to do more with it. And it took me a decade or so to look back to academia to start stitching things together but between that period I was practically doing stuff.

 

02:30

So that's a little about me. If that can be classified as little, I don't know. Theater, is that your first love before you got into the higher learning about autistic people and stuff? Yes, for sure. My aspiration as a child was to get into acting, and I did that until

 

02:58

Well, in part, I'm still doing it, but it's no longer my profession. Just because the way life turns, I found academia and I actually really enjoy research and I really enjoy teaching. And these are what I can do in a higher education institution. And so you got a PhD now, so we can call you a Doctor of Philosophy, which is quite cool.

 

03:27

Yes. You would have started, you got your first degree, then probably a master's and then a PhD. How long has this taken you to get this far? Very long because I didn't have that inclination to be in academia. I started in university in 2005, and then I

 

03:56

Then I found out I like teaching, so I then went back to university and I did a PGCE, so that's qualification for teaching, and then a few years later than that I then started thinking about how I could piece elements of my life together and I went back to university for masters. Then the idea of the masters was to go to the PhD. I did take a year break between the

 

04:25

but that was just to make sure the PhD was set up and I could actually get what I wanted. Cause trying to get all the paperwork done as well as finish the master's is a little difficult. Yeah, you know, my mom always said that a PhD means piled higher and deeper. So how long did that aspect take you? Oh, four years, four years of doing the PhD. I believe that is accurate. It's probably nearing five years in reality. Yeah, nearing five years, but.

 

04:55

I'll say four years because it sounds nicer, cleaner. That's impressive. What is your interest in autistic or neurodivergent people then? As I said, I probably didn't know anything about autistic or neurodivergent people before going to that summer camp. At the point where that happened, I started reading around with it.

 

05:24

I'd better find out about this. Just so happened that after that returning back to, because that was during my undergrad times, going to that summer camp, I went back to university and realized or found out that a lot of my friends were actually autistic and neurodivergent. And even retrospectively now looking back at who I was hanging around with and enjoyed spending time

 

05:54

probably also neurodivergent as well. Not that they didn't disclose anything, but just understanding from where I am now is very likely. So that's how that began. And then just getting along really well with autistic and neurodivergent people means that personal interest is sustained throughout the years and then academically.

 

06:21

It's just a great topic to ensure there's some development, positive development, in a way that's going to actually be helpful for autistic and neurodividend people. So my professional interest there is just because I do have that aspiration to try and improve people's lives, you know? Yeah, I mean, that's precisely what we do here at the

 

06:50

Many clients who do certainly identify as autistic here, but we you know We sort of run the gamut from developmental disabilities from fetal alcohol spectrum disorder down syndrome The whole thing but your your your thesis is focused on the autistic community, correct? Yes. Yes it is. Yes and Why did you choose yeah, we talked about it in like again the title is going full autistic and improv. Why did you choose?

 

07:20

in improvisation as a basis for your study? Um, yeah, as I say, it was about pinning things together. So having taught improv and having taught it to autistic, that summer school was, summer camp was kids, predominantly anyway. So having, having that experience and trying to pin things together, I went into my masters, didn't know what I could do. So actually my master's research was

 

07:49

autistic comedians and looking at comedy and then I moved from that onwards to improv. So it really was just pinning things together and you have to be interested in your PhD in order to complete it. So coming from that interest, by all means in academia we talk about conflict of interest, you could suggest there is because I have taught it but...

 

08:18

there was a cutoff where I really have no interest in financially gaining from autistic people engaging in improv. Yeah, but nonetheless, that has its own debate, but we don't need to talk about that on your podcast. And so you mentioned that your study group, I guess, wasn't that big. And so did you take me through that process of sort of studying people?

 

08:47

with autism within the improv environment? So yes, the second part of my thesis looked at autistic people engaging in improv and such, and the whole process was quite a big process. I had to start with understanding what was already out there, what literature existed, then I wanted to understand, well, there's not even a lot

 

09:17

whether the past literature around that actually fits to the global community of improvisers. And then from there I started looking at autistic improvisers' experiences, non-autistic improvisers' experiences, and then eventually get into that point where I could set up classes for autistic people and then explore what that could be. So I had 17 people in that class.

 

09:46

second part of the thesis where I looked at that study in various ways. So I was looking at how to implement the classes in an appropriate manner, so conducting some research where I look at if the classes were suitable, if not adapting it, and that was cyclical when it was constantly going through these phases with different groups. The groups themselves are quite small because Covid

 

10:16

because it was necessary for people's comfort as well. We were online, so there's various reasons why each group was small, but I had multiple groups, so that was happening. I also looked at the benefits in general, and then I also measured and asked about anxiety. So those are the three sections of that last study, which is quite hefty, as you might be able to tell. I hope you can tell.

 

10:43

It's like when you're measuring anxiety, I mean, that seems to be a big part of your thesis. Do autistic people do better with anxiety in improv? How did you measure that anxiety? I was interested in just understanding generally about anxiety. I used a measure around state trait anxiety, so the general state someone has in the moment. Is that reducing?

 

11:12

maybe even if someone's traits, their general anxiety levels, would that decrease? The answer is no, that's the one thing that didn't happen, but I also looked at social anxiety and there's a measure called Leibowitz social anxiety scale, I used that looking at social anxiety and that did seem to reduce for within that study. So we can suggest that for some autistic people social anxiety will decrease.

 

11:41

But I did find this social avoidance won't decrease, and there's lots of reasons we can explain that one, but just hypothesizing around why that could be. And I also looked at uncertainty, and we don't want to talk about uncertainty in a way that is a misnomer. Everyone experiences uncertainty. What we want to look at is if certain things can reduce uncertainty for everyone.

 

12:10

and improv seemingly can do for the general population because it has been done by a wonderful academic over I think in the States USA called Dr Peter Pelsman. He works, he does a lot of work on improv and on anxiety and uncertainty. So he's done that and I used this concept of uncertainty to see if that would reduce and it did seem to as well. So these were the things I was interested in but I also wanted to understand exactly

 

12:39

what was working, why it wasn't working, you know, just generally understanding qualitatively about it as well, because we can measure these things, but sometimes measures aren't really gonna capture what we need to, because we start making lots of assumptions when we start measuring. So I asked the qualitative stuff as well. And with that, we have to acknowledge the fact that the social world is not constructed for autistic people nor neurodivergent people. That is obviously-

 

13:07

obviously going to create issues, so we have to understand that anxiety could rise when they're not in improv and when they are in improv maybe it goes down, but the first class is always going to be anxiety-provoking, so that's going to shoot sky high, and if things don't quite go quite right in the class, anxiety is going to spike as well. But in general, anxiety seemed to be quite low qualitatively during the classes, and I only really looked at pre-post for the measurements.

 

13:37

So that was true as well. And there's always gonna be other aspects that create or decrease anxiety, including those outside aspects. Even just, everyone might experience, if you're in college in the States, then that could mean, oh, you're worrying about your workload, or maybe if you've got stuff in the job and you're worried about...

 

14:05

something in your job that was going to increase anxiety anyway. So, you know, we can't, we can't just reduce down, reduces down to a yes, no. Well, yeah, exactly. It seems like, you know, for lack of a better term, bit of a spectrum that you're trying to try to cover there. So, but how many, you know, when we're talking about classes, improv classes, how many would you have done with these 17 participants in order to generate,

 

14:34

some of the answers you're looking for. So this is actually quite a let's say cool thing with this. It was COVID times, it was online, so there's limited, there's limitations about what I could do. I only ran four online classes and I and during COVID time I still seem to manage to find a reduction in social anxiety and uncertainty. I think that's pretty impressive considering it's not a lot of time. But so I was quite quite

 

15:03

I wouldn't say surprise, but I was quite happy to find such a result. I don't want to say I was going to say clear as though it's not clear necessarily, but you know, it's it's there, it's significant. And with all that qualitative data, it was it was quite there was some some clarity to I suppose. I don't want to oversell some. Now, did you obviously this was just focused on

 

15:32

autistic people? Did you look at any other sort of neurodiverse people with different disabilities, or just autism? So in another study that I did in the thesis, I looked at autistic improvisers, I looked at neurodivergent improvisers that weren't autistic, and I looked at neurotypical improvisers. So in this one, I did look at neurodivergent improvisers and neurodivergent people.

 

16:01

But I didn't measure anything. Those were interviews I conducted. And they had experience of improv. So it's just understanding their experience of participating in improv in whatever capacity they did. You talked about reducing anxiety, but what other benefits did you notice for autistic people involved in improv? So other benefits included there's a way of looking at quality of life. So qualitatively

 

16:31

looking at quality of life, we found that there could be aspects of emotional well-being that occur, there could be aspects of social relations that occur, and such things like this. For all improvisers, going back to my first survey that I conducted, we can tell that there are some social developments and communication developments, but we don't want to apply this to autistic people, because then we're going to lead down a track of

 

16:59

let's do social skills training which is really really inappropriate. Never do that. Let's go and force autistic people to mask. That's not appropriate, it's not good. We want to enable autistic people to have their own autistic sociality which does occur, it does exist. There's various research that says that. And in improv it's a social art so I preface what I'm

 

17:29

Improv can provide a space where you can develop socially and develop your communication and that occurs for no matter what neuro type you have. So that's another benefit that you can have. Improv can be like a well it does have a community so you could find a community of people that you want to engage with as well so that's something else that.

 

17:56

that can exist and that was threaded through the whole of my thesis because it happened with the first survey and even at the end I was talking about autistic space and how the autistic learners in that class enjoy being with one another so that was already creating a form of community there and some of which did go on after the class to continue doing stuff together.

 

18:26

Now, within those classes, I mean, I get that you were sort of focused on the autistic people. Were there neurotypical people involved in the class at the same time? No, simply no, no, that would also damage the autistic space. It was literally stated in a focus group in those classes that if there was one autistic person there, that would ruin it all. Like if we were actually in person in a community hall and the other half of the

 

18:56

their attention, the autistic participants attention would not be on their class, on the improv, but the other people in the room. And also, even if it's with the online class, if there was a neurotypical person there, they would be concerned or worried about whether they would be paired with them in a game. I was putting people in breakout rooms during this process, so they'd be worried that they would be paired with the neurotypical entering a breakout room. So

 

19:26

So it is important to understand that it can be easier for autistic people and neurodivergent people probably to be paired with other autistic or neurodivergent people. Many of the participants did state that it didn't mean need to be an autistic person necessarily because neurodivergent people can be quite welcoming and such and quite accommodating anyway, so neurodivergent identity is quite adequate according to what I was told.

 

19:56

Now, the group you're, I guess they would be qualified as a high functioning autistic? We don't use that. Just because that creates distinctions between people that are really inappropriate and just inaccurate, essentially, it creates stigmatization of people. You're high functional, you're low functioning.

 

20:25

it doesn't work at all. I got a research around this as well. I conducted a survey fairly recently around the viewpoints of autistic people around language, and it was a very small amount of people that were okay with function labels. Most people were, most autistic people were not, and even within those people that did find it acceptable to use function labels, there was a little bit of difficulty understanding exactly how it was because

 

20:54

Some of the points within it suggested that, well, I don't use it for myself, but I'd use it for other people. Well, it doesn't quite match fully. I can't talk a lot about this just because it's not published, but that's a quick overview around that. Yeah, I agree. The whole language about that seems to be evolving a little bit. I've been involved with Developmental Disabilities Association for about three and a half, four years, and it's been very eye-opening for me.

 

21:24

You know, you sent back some edits to me before we engage in this conversation. You want autistic people, whereas by and large, the association here tries to put people first, like person with Down syndrome, person with autism, where it's the autistic community, as you've sort of shown me, it's the other way around. Yes, yes it is. And so, yes, thank you for that.

 

21:53

bit of education. Now, what sort of limitations did you find in your research, or perhaps were there some instances where improv sort of didn't do what you hoped it would? Yeah, there are difficulties with coming out with solid concrete conclusions, which I've tried to be careful with during this as well, because I can only say improv may work.

 

22:22

for some autistic people. And that's because inside the class, I also have people that just didn't get on with it. I had someone that really wanted to enjoy it, but just struggled too much to engage with improv and its natural needs, requirements. And someone else just didn't like acting out basically. So there's no value to them to engage in improv when the whole...

 

22:50

concept of it is to act out sketches and act out stories. So in fact they went back to something where they could improvise in a way that was better for them and they through the process of engaging in the research, my research, they actually returned to something they previously done where they could engage with improv but in a more suitable way for them. So there's some limitations there. Improv is not a panacea which is a quote from another

 

23:21

Now, in terms of the improv itself, were you sort of leading towards, when you talk about sketches, are you leading towards serious drama type things or more comedy? Was there an element that was a better vehicle, if you will? The late, great Keith Johnstone would say that comedy will become...

 

23:46

more easily and first if you want to be dramatic and serious that takes a lot of effort you need to develop as an actor to get there. So having that fun, having and sharing that fun is naturally going to create comedy more than create something serious. There are going to be people that enjoy more serious presentations of the scenes they want to do and that's okay. It just means that people

 

24:15

need to be on board with exactly what they're co-creating. But in general, you're going to lead towards the funny, certainly to begin with. Now, in terms of your classes online would have been perhaps a little bit more difficult in some ways in terms of movement. Was it more about the speech and what was coming out in terms of

 

24:42

ideas or movement was involved in some way? This was a concern I had before I started the study. I wasn't so keen on putting it online because of this thing you're talking about. You need the space, you need that physical interaction, and it becomes very much more difficult. During that time, I was also providing classes. In the end, I ended up providing classes online

 

25:12

and what I did was I delivered film acting for improvisers in a way because then you you are that's what you're doing then we have this aspect of it as well so you've got a frame around you you can improvise within that frame you can still move you can still do physical things and for the classes that's all that was required delivering some more something more means that

 

25:40

we get lots of other film aspects and cinematography and such that can happen. But that's not why I was delivering in the research. Now you spent a lot of time or sometime at least in the US. Can you tell me about your experiences there? Yes. So I assume you're referring to the summer camp again. But I have been around the US in other occasions as well. So part of

 

26:08

of my enjoyment of improv is that I did go over and train and I went to Hollywood which is very nice. Yeah it was nice to train over there so that experience was really useful, it really shaped how we can look at improv more broadly and I think when doing that you could then see how broadly you can teach or apply improv in live.

 

26:38

for autistic people maybe that also helps to be able to understand the form. In my VIVA, it was questioned whether the fact that because of COVID I was delivering the teaching, which was not the original plan. They questioned me on this matter, like did that impact the research? And actually it did because I have a lot of experience with autistic people and have a lot of experience with improv, these things.

 

27:07

coincided in a way that's actually really conducive to the outcome that was being sought. I originally wanted to bring in a really experienced improv teacher and I wanted an autistic teaching assistant which I ended up having in my study anyway, but originally the plan was to have them both there at the beginning. So that change matters and I think my experiences in the US really helped.

 

27:35

in the way that I could think about the pedagogy being delivered and how that could be framed. And it was, there's a vast amount of time between my first experience in the United States and now and obviously that bit in between. And from going from that initial experience of delivering improv for predominantly autistic kids, that that

 

28:05

Progress was quite an interesting one because obviously, it was only really beginning back then, an improv, let alone anything else. So that's the insight I think I can deliver for that question. That's my experiences there. How as a society can we do better for the autistic community? In many, many ways. In many ways. We have to, I believe, we have to stop

 

28:35

creating additional labels that aren't helpful. If we want to meet needs, we have to meet individual needs. We have to listen to autistic people and neurodivergent people, hear their voices and actually do what's required, do what's been said. So that means removing any of the norms that are supposed to exist because why should they exist? There are reasons academically.

 

29:05

but it doesn't work. It doesn't work. So if it's not working, then we need to change fundamentally. So we listen to autistic people, reduce the norms that exist, enable autistic people to engage with. Such things as improv without it being for a reason other than out of interest. That's another thing. Like neurotypical people can go and do improv. It doesn't have to improve their.

 

29:31

communication. They can just go and do it for fun and then eventually they will, as per my interview study, find out actually there's lots of value here and that's different to that. So that's probably my quick to sense, I should say sense, shouldn't I, on that one. Now what does the future hold for you? Are you going to move on in your career as a lecturer or are there other areas of autistic study you'd like to embark on?

 

29:59

Yeah, so at the moment I'm looking at higher education and inclusive pedagogy. I'm interested in mental health and well being obviously, so I'm going to keep with that topic as well. And there's endless endless supply of things I could do. I'm beginning. I'm an early careers research now and early academic, so there's so much I can do and so much that I would like to do isn't.

 

30:28

just about being realistic to these goals. What should I do? But predominantly I'm gonna stick with working with autistic people and that's gonna be the starting point. Well, that sounds really great. I think we've run out a little bit out of time. So you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Nathan Keates all the way from London, England.

 

30:57

Nathan is a lecturer at the University of Sunderland in London and an expert on how theater and improv can be beneficial for some autistic people. Nathan, thanks again for speaking with me today. Thank you very much. I thoroughly enjoyed it. Thanks for listening. See you next time.

 

At some point in our lives, we will all be touched by dementia or Alzheimer's disease. Unfortunately, in the developmental disability community, these conditions are more likely to show up. We connect with Karen Tyrell, author of Cracking the Dementia Code and consultant to the DDA community.

 

TRANSCRIPT

 

Dementia and Alzheimer’s – When Caregiving is Vital

 

00:05

Welcome once again to DDA's Encouraging Abilities podcast. I'm your host, Evan Kelly, Communications Manager here at Developmental Disabilities Association. Today we are talking about aging and dementia and Alzheimer's in people who have developmental disabilities. Dementia and Alzheimer's can be hard on people with developmental disabilities in the community because they can be at higher risk of developing the conditions. And we'll talk a little bit more about that in a moment.

 

00:31

Advances in healthcare also mean that people with developmental disabilities are living longer, thus creating the need for understanding how caregivers can deal with the onset of conditions like dementia or Alzheimer's. Joining me today to talk about this is Karen Tyrell, who recently was contracted here to provide regular dementia care to frontline staff and management teams. So next week will have been four workshops so far.

 

00:59

So Karen is a certified professional consultant on aging and a certified dementia care provider with a passion for improving dementia care. She is the owner and operator of Dementia Solutions and offers education and support for families and caregivers when it comes to aging with these conditions. She is the author of a book called Cracking the Dementia Code, Creative Solutions to Cope with Changed Behaviors. Also a therapeutic coloring book for adults.

 

01:27

and is the co-creator of an app that offers solutions when dealing with those with dementia and Alzheimer's, all of which can be found on their website, Deme So Karen, thank you for joining me today. Well, thank you for inviting me, Evan. This is great. So you've been in this industry since 1995. What got you into it? Well, at that age, I was just finishing high school.

 

01:53

and I wasn't sure which direction to take, whether to work with children or adolescents, or I wasn't quite sure. I did some volunteer work and I found out it was definitely older adults. I really enjoyed my time volunteering in a long-term care home. So then ever since I have been on a path and I went to take a program in school,

 

02:18

that was in Toronto, Ontario, where it was gerontology based, but it was therapeutic recreation. And that program actually had me do practicum twice a week and learning theory three days a week. So I was really able to get a sense of what the real world was like. And working in long-term care, I experienced many situations with individuals with dementia.

 

02:47

And that's where my passion started right away, wanting to make a difference for these individuals in all stages. Now, can you define dementia versus Alzheimer's? Sure. So let me just start by saying Alzheimer's disease is a disease. Dementia, a lot of people think it's a disease on its own, but it's not.

 

03:13

So dementia, if you can picture your hand, and I'm going to make you make a fist, and each finger would be a symptom. And when you close your fist, it creates a syndrome. So what dementia is, is a syndrome that is made up of, I'm gonna say here, five common symptoms. Now let me just give another example of a common cold.

 

03:41

When we get a common cold, it's not a disease, but we get symptoms like runny nose, headache, sore throat, coughing. When we get all these symptoms, oh no, we got a cold, great, this is fun. But those symptoms typically fade away. But a cold is a syndrome. So dementia is a syndrome. And the common symptoms that we do see, and I'm just going to share a few of them, is

 

04:11

Poor memory. Of course, a lot of people know this is very common when we see somebody with memory impairment. That is a symptom. Another symptom is poor thinking abilities. So difficulty making decisions, difficulty with figuring out how to get from their home to the grocery store perhaps, where they used to be able to know how to do that, or difficulties thinking how to make a big meal.

 

04:39

So thinking impairment does show up. We also see judgment impairment. So some people making inappropriate decisions around safety, their safety, the safety of others, or decisions that are poor around saying things inappropriately in public. So there's lots of examples, you know, people using a chair that has wheels.

 

05:05

to reach for something in their cupboard. So, you know, little things like that start to change for judgment. And then the other common symptom I want to share is communication difficulties. So sometimes we will see an individual having difficulties making a sentence, a proper sentence, or finding the right word for things, but...

 

05:24

what happens is not the normal aging. Normal aging would be, oh, what's the word? It starts with an A. You know, you put it with your, you know, your tacos. Okay, it's avocado, you know. So, it's basically switching up a different word, using a completely different word to explain what they're talking about. Or they're having difficulties comprehending what people are saying, even though they're speaking the right language.

 

05:50

the comprehension has now been compromised. So that's another common symptom. And the last symptom I want to share is personality changes. When we see the person no longer behaving in similar ways or have similar interests anymore, or maybe let's say they were always so patient and understanding and happy to be around, now you visit with them and they're not very happy. They're complaining all the time or they're...

 

06:18

you know, why am I doing this? Why are you here? I don't want you here. Where they were never like that. So these are just some examples. So when we see all these changes in a person and they're all happening frequently and more on a consistent basis, because we all have our days, haven't we? You know, we forget things or we, you know, we have our moments. I have my moments.

 

06:42

But when it's happening to someone and the family start to realize, boy, this is happening a lot more and we're seeing it almost daily now, this is when we need to say, okay, let's go get this person checked because maybe they do have the syndrome of dementia. And maybe a clinician will say, yeah, we have all the symptoms of dementia. But the next question really should be, what is causing dementia?

 

07:08

What is causing this person to experience those symptoms? Because it could be because those same symptoms are within Alzheimer's disease. So is it Alzheimer's disease? But there's been cases where people have had all those symptoms and it's not a progressive type of incurable disease. It's actually something they can treat, which might be related to a vitamin B12 deficiency or even depression.

 

07:37

can show up those symptoms. But if we treat these conditions, the symptoms of dementia can go away. Even a thyroid condition has caused people to feel like they're developing what they call Alzheimer's. I've got Alzheimer's. Well, wait a minute. Let's go look into this a little bit more. So I highly encourage people to go and get this looked at by their family doctor or maybe even a referral to a specialist.

 

08:04

who can tell you what's really going on for you and your symptoms. And I might be getting a little bit ahead here, but we're talking about, you know, like certain symptoms that lead to a syndrome that must be much more difficult to define for people with cognitive disabilities. Yeah. So some people themselves that starting to show these symptoms may not recognize it in themselves. It's usually the family or friends or neighbors.

 

08:32

that are the ones to point out, well, wait a minute, things aren't quite right here. Um, yeah. And there is, you know, I thought I'd know what there is a condition that happens in people's brain that is common with dementia and it's called, are you ready for it? I am. Anasognosia. Says what? Anasognosia. And so if we want to spell it out, it's A-N-O.

 

09:01

S O G N O S I A. Okay, anosognosia. Gotcha. Yeah. Sognosia. So this really means no awareness of illness. So there are people that also have dementia and anosognosia where they think they have nothing wrong with them. They can still drive perfectly. They still know where they're going. They have a perfect memory.

 

09:29

but family friends will go whoa no no no no you're you're having trouble but they will disagree some people call it denial that the person doesn't think they have anything wrong with them and they're denying it but it really is a condition in eighty percent of people with dementia will also have anaphyl agnosia so it can be a challenge for families to try to convince someone to go to their doctor when they have this

 

09:58

Now Alzheimer's on the other hand. So, yes, Alzheimer's disease is a disease that Dr. Alzheimer discovered well over a hundred years ago now. And when he did the autopsies on his patients who were living life with similar types of symptoms that were getting worse and worse over time and similar changes to their, their function, their day to day.

 

10:28

When he did the autopsies on them, he discovered in the brain abnormal and excessive amyloid plaque. So plaque was excessive in their brain as well as what they call tangles, the neurofibular tangles, inside the neurons. So these two things, the amyloid plaque and the neurofibular tangles, were what...

 

10:55

he discovered was abundant in the brains of the people he was supporting. And therefore it, it, it, you know, eventually turned into what's known as Alzheimer's disease right now. And sadly, you know, the brain eventually shrinks because of the damage that's being done. The neurons are dying because they're no longer functioning and communicating.

 

11:22

The amyloid plaque basically is surrounding the neurons and causing them not to be able to fire their messages to one another and it's just so much garbage and sticky plaque that's just built up in the brain that is not allowing it to function the way it used to. But we do notice with Alzheimer's disease that it starts in the hippocampus of the brain and this in our brains is where our memory

 

11:51

and our learning takes place. Sadly, that's where Alzheimer's disease attacks first. And it really causes damage moving outward, almost like spreading like a little bit of a virus. And this is how we know when people are in the earlier stages, middle stages, later stages. It tends to go slowly around the brain to eventually we're dealing with a person who no longer knows how to walk or talk.

 

12:20

feed themselves, toilet themselves, that sort of thing. And it's really, really heartbreaking to watch a person go through that journey. Oh, absolutely, absolutely is. And again, if we're talking about people with cognitive disabilities, that might be another thing that's difficult to diagnose. Okay, so when you're talking with adults with a cognitive disability similar to maybe like a Down syndrome condition?

 

12:49

Yeah, it can be very difficult to diagnose. This is where the caregivers, the people that are front line with them as their primary caregivers every day, would likely start to notice some changes. This is not normally their personality, and this is not normally them having difficulty with their words and speaking, and they're really forgetful. And I just told them a sentence.

 

13:16

five minutes ago, but they can't recall even what I just told them. So people will start to notice eventually, but may not right away. But because usually with Alzheimer's disease in the earlier stages, it could be between two to four years before people get help because they don't see it. Maybe four years later. Yeah. It might, it's to those on the outside. It might not be as, as obvious because it might be such a gradual turn. It is gradual. Yeah.

 

13:46

So, but again, all we can do is rely on those frontline people to speak up and say something and then from there, let's get that person diagnosed and let's hope it is something that is treatable, like maybe a vitamin deficiency or something else that might be going on. But unfortunately, in the world of a person who has Down syndrome,

 

14:09

The sad part is that these individuals, as we know, have an extra chromosome. And this is chromosome 21. And the interesting thing here is that chromosome 21 is the chromosome that does have excessive plaque. It's responsible for producing the specific protein that is in excess.

 

14:36

for all of them to be like we see abundance of it. So when a person only has two chromosomes, there are, you know, they could have the chromosome gene, sorry, sorry, the chromosome has the gene that's responsible for the plaque. So if we're carrying that gene, we might have more of a chance or a risk of developing Alzheimer's. But when we have a third chromosome, it increases our risk. Do we know sort of what percent of a risk that might increase?

 

15:06

Yes, unfortunately, people with Down syndrome will have, well actually I don't know if I have that exact percentage. I'd have to look through my notes again, but I know it is significantly higher. What we do know is that people who are in their 50s have a 30% chance.

 

15:35

of developing all time and just the typically public in the story and and people who have down boys and now what the all barra society canada stand at statistics show is that people over the age of sixty five uh... they have and and more increased red of developing all time and fifty and i remember when i was working with the all time or society and

 

16:05

I was doing some presentations where I had to say one in 13 Canadians over the age of 65 are developing dementia. And then a few years later, that number changed and it was one in 11 Canadians over the age of 65. Now they don't use those numbers anymore, but they are saying currently half a million Canadians.

 

16:31

over the age of 65 are developing some form of dementia. But with people with Down syndrome, they're saying 30% of these individuals in their 50s are developing Alzheimer's disease. And then the statistics are showing that 50% or more are affecting the people in their 60s who have Down syndrome. So the numbers are.

 

16:58

Increasing faster and faster because the numbers go up every year after a person turned 60. That's very interesting. I mean, is it because we're recognizing it more or is there actually a problem? We're aging and we're aging longer and living longer. Right.

 

17:20

So the interesting thing is that years ago, 40 was over the hill and now people are living over a hundred years old. Like we're moving that life expectancy number over the age of 80 now. But people are living longer. Now there has been some information that came out of the United States that said in 2020,

 

17:48

the life expectancy for people with Down syndrome was age 60. And that compared to what it used to be in 1983. In 83, the life expectancy for somebody with Down syndrome was 35 years old. Wow. That says a lot about our health care, right? Yeah. So we're living longer. People with Down syndrome are also living longer to age 60. And so, sadly,

 

18:15

Years ago, I remember learning in school back in the mid-90s. There was almost like 99% of all people with Down syndrome would develop Alzheimer's disease. Now, I don't know if that number has changed. I think I remember reading it was lower now. However, because of that extra chromosome,

 

18:39

these individuals are more at risk of having excessive amount of plaque in their brain. Yeah, that's a huge percentage of the population. What about of the population with Down syndrome, I mean, like what about drug therapies? Or is any of this advancing? Well, so.

 

18:58

for many, many years. Actually, when I was first going to school in the mid-90s, I learned about the very first drug that was approved for supporting people with Alzheimer's disease, and it was called Aricept, also known as Denefazil here in Canada. That's been around for a while, and that's the very first drug. What it does is basically it's trying to help add what's known as

 

19:22

acetylcholine in our brain, so add more of it, because that acetylcholine is helping the brain neurons fire the message to the next neuron. And so to help it, because sometimes that gap is between the two neurons is growing and that neuron can't fire the message, but the acetylcholine can help. So the medication is helping people to fire messages better. And then there were two other medications from two other drug companies that basically are doing the same thing.

 

19:51

possible drugs on the market. One of them was a patch if people couldn't do the oral medication. So it's been really frustrating over the years. They tried to have a vaccine. Those studies had to be ended because of brain hemorrhaging when they went to human trials. There was so many attempts, but the last few years a drug did try to come out that was

 

20:19

helping to remove that amyloid plaque that I talked about. And so this drug had some controversy in the last few years because it came out saying it worked and then it didn't work and then it, oh no, no, no, it really did work. And so the Food and Drug Administration, the FDA, in the United States approved it and said, okay, we're gonna approve this drug now.

 

20:43

for use in the United States. It's not approved here in Canada, but so there's still, the jury's out for a lot of people on this type of drug, very, very expensive, and it's not a cure, but they're saying that in the studies and the trials that it did reduce some of that amyloid plaque, basically delaying the process of Alzheimer's disease.

 

21:13

workshops here, can you take me through, like when you're coming to DDA to talk to our caregivers, and we employ many because we have 19 group homes, we look after lots of people, take me through that process. What is it you're trying to impart to our caregivers to deal with these kind of situations?

 

21:31

Sure, I've had fun so far. It's been great. We've had full classrooms and lots of great participation. So basically, I am going through a reminder review of what is dementia, a review about what is delirium because a lot of people can mix up because there's a difference between delirium and dementia. And delirium, for those that are not familiar, it is a sudden onset

 

21:57

like suddenly similar symptoms to dementia, where there's, wow, they're not themselves, their, their, their personality certainly has changed. They're having troubles remembering, they're having troubles with their thinking and their poor judgment. And, you know, they're trying to stand up when they were told, sit in the chair because you just had a hip replacement and, you know, whatever it might be, they're doing things that are just off, you know, not who they normally are.

 

22:22

And so when we see sudden changes, I want all frontline staff to report that because a sudden change can mean delirium and delirium is treatable. But we need to recognize delirium and we need to get help because delirium is often due to pain, dehydration, maybe a urinary tract infection or any kind of infection. And these need help. So like hydration is needed for dehydration. Antibiotics for any kind of infection.

 

22:51

pain management for pain. So there's a variety of others, but just trying to help the frontline staff recognize delirium is treatable. If you see changes in the person you're caring for, talk to a nurse or a manager. I will do the overview of Alzheimer's disease for the groups and also what are the stages and what common things do we see in each stage so they can recognize the changes in their own clients and residents.

 

23:19

And I do share some of the statistics I shared with you about Down syndrome and the impact with dementia that it has on an individual. And the, you know, also that, which I didn't mention to you, is that with Alzheimer's disease, it's usually a very slow and long journey, which could last 20 years or more for some people.

 

23:48

diagnosed with Down syndrome, their length of time with this journey is between 9 to 11 years only. So it can come really fast and so having them aware of the different changes, different stages and I give them ways to cope with those changes. And I also give them some strategies on what we do when a person's behaviour

 

24:14

starts to really change because of their poor memory, their poor thinking, their poor judgment, their behaviors will change. So I give them strategies on how to cope with that. And then reminding them about, hey, you know, as they're changing, we still need to remember this is a person, this is an individual who has their own values and history and stories and, you know, abilities and disabilities. So we still need to work with them

 

24:43

using person-centered care. So reminding about what person-centered care looks like and

 

24:50

communication tips on how we can talk to somebody who has now difficulties with comprehension. So teaching them the communication tips and just reminding them of some self-care reminders for them because these frontline workers are so important and a lot of them don't realize that. So I really want everybody who's frontline to know how valuable they are in the work that they do and I really think that they deserve the recognition and the validation

 

25:20

So keep giving them self-care reminders is always important. Absolutely. These people are like family, right? So they are not just employees to us, they're vital to what we do. So from your point of view, when do people need to start seeking support?

 

25:42

and the individual themselves are they can't find workers i guess it is for the caregivers yet caregivers frontline workers even family members when you need to start looking out looking for support my suggestion is and possible and as you realize something going on here that looks like dementia if we can get connected to support whether it be

 

26:09

you know, just because knowledge is power. So building up your power by getting the information so you can understand what you're dealing with and how you can best cope through it. So I think right away, find the support people who can be in your corner when you have questions or when you have concerns.

 

26:30

And this could also be in the form of a group support where other family members, other caregivers come together and it's about an hour, an hour and a half type of situation where you can learn from each other, hear their stories, learn ways that they're coping and it could spark ideas for you. It may not be necessarily the exact scenario you're going through, but when people are together and they're listening to one another who are in

 

26:59

somewhat of a similar scenario, they don't feel alone. And that's a big thing, that's huge. I do a lot of caregiver support groups and that's one message I hear, gosh, I'm so happy to be here. I don't feel alone anymore. And that's huge. And that must be, I mean, even, you know, for typically developed people who are showing these signs, I mean, family members and caregivers must experience a lot of pushback, you know, like I'm fine, leave me alone kind of thing. How do you try and coax

 

27:29

in a nice way that, hey, there's something going on here and we need to check this out. Well, what I like to try, everyone will be different, but I do like to try to say, it looks like you're at an age where some people could develop low B12, and then maybe, let's go get your vitamin levels checked. So, approaching it in a different way to get to the

 

27:57

in the form of let's go get things looked at just in case it might be related to your thyroid. But not to mention the word dementia, never mention the word Alzheimer's disease in the beginning, just to get them into the doctor. But then to tell those family members to reach out to the family doctor in advance, talk to their secretary, whatever it might be, email if you can, to say I'm

 

28:27

you look into this. So that's one way to try to get them looked at by a professional without raising their, you know, their back up and trying to dig in their heels. I'm not going to get my brain checked. My brain is fine. Using another excuse to get to the doctor. Or one other family recently said, oh, it's your regular yearly appointment, wink, wink kind of thing. It wasn't quite a year, but you know.

 

28:54

then they weren't going yearly, but it's basically saying, time to go, or some families have contacted the family doctor, they please call my mom on Tuesday, I'll be there all day, and just say it's time for your appointment, so it doesn't come from me. Because sometimes when the families are trying to suggest mom or dad, whoever, to go to their doctor, they think that they're

 

29:18

suspicious and they're up to something. So they don't listen to their family member. But when it comes through by another, an outsider, like the doctor's office, they may go to their doctor. So there's the different strategies we try to use in order to encourage a person to seek more help. Now here in Canada or British Columbia, is there enough support for families for people with dementia and Alzheimer's?

 

29:46

Well, in my opinion, no. Is this, you know, perfect around the world? No. You know, this is a population that we can do better, we can do better. There's been challenges where even the family doctor has told the family caregiver

 

30:13

get out of my office, I'm not talking to you, you're not my patient. Whereas the family is just trying to get that doctor to understand, to see a problem. But sometimes only a 20-minute visit doesn't prove the person has cognitive challenges and therefore it takes longer to get a diagnosis. So in my opinion, we need family doctors to understand the value of the family caregivers and not to think that they're trying to...

 

30:39

set them up or gaslighting or anything like that, they're actually noticing something. So I'd love to see that stop. And then when they do get a diagnosis, there is a program which I'm so thrilled to see, and I remember being a part of the pilot project in Ontario called First Link.

 

30:59

with the Alzheimer's Society across Canada. And BC also has that first link program. So some doctors are on board with this and are really referring right away the families who they've noticed received a diagnosis into this first link program where they can then have a caller call every few months to check in on the family from the Alzheimer's Society. How are things going? What help do you need now with? Unfortunately, that program's not perfect either.

 

31:27

because sometimes the family caregiver can't speak on the phone because the person with dementia is in the room when they call and they don't want the Alzheimer Society phone number to show up on the call display because the person is experiencing anosognosia and therefore would be very offended if they're getting calls from the Alzheimer Society or if the person is speaking to other people on the phone about them.

 

31:52

So I wish there was more undercover type of support being offered to families. Interesting. And so that's a little bit of what I do is I'm available for families whenever they need to call me. And so yesterday I get a text message, Sunday afternoon, I need to talk.

 

32:11

You know, I text back, give me five minutes, you know, and I'll give you a call. So I like to be there for when families need it. And I wish there was a service like that for all of BC where families can call 24 hours a day because dementia is definitely not nine to five Monday to Friday. Definitely not. So families do need that outside the hour support of what do I do now? They're trying to wander. What do I do now? They're not taking their meds. What do I do now? She's screaming at me. She thinks she has to go to work.

 

32:41

PM at night and trying to leave the house. So these types of challenges families could use more support, a go-to place, other than me. Yeah. Now, because I have a friend of mine is launching a very similar business to what you do and so and I hadn't even heard of this kind of business that you and she do and it's almost like it's a growth industry. It's almost like we're kind of playing catch-up. Does it feel like that for you? Oh gosh.

 

33:08

Absolutely. And we've called this whole scenario about Alzheimer's disease or dementia as a rising tide. People have used the analogy tsunami, but no, we knew about it. It wasn't a shock to us that we're now swimming with so many people affected by Alzheimer's disease or another type of dementia. So we are up to our necks right now and we need more.

 

33:34

people to go to because families are stressed out. They can't do this alone. People with advanced dementia have more challenges that one person can handle. They need home support. They need 24-hour monitoring. And the caregiver can't stay there 24 hours a day, seven days a week without help or without getting out, without... ..

 

33:56

survival tips for themselves and the costs are also quite high and the frontline workers are not in demand like they're sorry highly in demand and they're not there to take over all of the shifts that are needed and required for people whether through the health authority or through private organizations

 

34:17

there is a shortage of frontline workers who are trained and compassionate using the right person-centred techniques in dementia care. So that's another problem. So there's so many challenges that, you know, and then caregiver support groups, we need more of these options for people.

 

34:39

that can be done over the computer now. Because people often can't leave their homes. So having now that COVID has introduced so more and more people using computers like Zoom or Teams, this is great to help these families who are isolated.

 

34:59

So much more could be done and I'm happy to brainstorm and share all of this if anyone will listen, but there's so much more I can talk about. Now let's shift gears a bit. Cracking the Dementia Code. Why did you write this book? Well, when I was working in Ontario, long-term care home, plus I was also working as an executive director for an Alzheimer's Society.

 

35:28

what things are like in the community for families as well as what it's like in long-term care. And the biggest stressor is when people start to develop the changes in their behaviors. What do I do? How do I say this? What do I say? Why can't I tell them their mom is dead? Why, you know, and, you know, so questions that a lot of families didn't know how to handle the behaviors. When I moved to BC in 2009, I was hopeful that BC would have been more advanced than Ontario was.

 

35:58

I really wanted to see things improve. Sadly, it wasn't the case. It was actually the opposite. Actually, when I realized, I looked into the situation and it appeared to me that BC was actually 15 years behind Ontario. And I was devastated and I felt as though there was no real support. There was no dementia care networks here, which I was a part of in Ontario, where these networks were people, businesses, families,

 

36:28

doctors, everyone coming together to really talk about dementia in their communities. But when I moved to BC, there's none of that. I volunteered for the Alzheimer's Society when I arrived and I saw the gap. And I also saw when I was working in a long-term care home, because I started back in long-term care here at BC, that the staff were doing approaches that were pretty much back from when I was starting in the field in 1995.

 

36:57

And it was just really upsetting to me. And I thought, I can't sit and wait for the government to make changes. And boy, when I look back, and it's been over 14 years now, I am so happy I took action and I created a workshop called Cracking the Dementia Code. And I had in mind the people that I saw making the inappropriate approaches in mind.

 

37:20

what would I do to want to teach them in an easy to understand way because English was not always their first language. So I made this workshop and I put it on for families and I put it on and I offered it to frontline workers. Over the years it's been keeping me busy providing this workshop in person. And then I decided that after receiving many phone calls, I hear you've got a great workshop I'd like to attend, but I'm in Alberta, or I'd like to attend, but I can't, I'm in the interior.

 

37:49

And so after word of mouth growing, I decided to write the book. So basically, I was taking all the material from the workshop, but adding in more, adding in so many more extra chapters because it's only a three-hour workshop that I do. So I wanted to provide that extra. And so I, it just fell into my lap, an opportunity to write. And here I am. I have this published book, which I am getting feedback is.

 

38:12

so heartwarming and uplifting that this book has really helped a lot of families and the frontline caregivers. So I'm just going to continue to go with the flow and really do my best to give the information. And I'm just so excited that I have this opportunity with the Developmental Disabilities Association here in BC to educate their staff and inspire them to continue to give great work. And just a side note, that book is available on Amazon as well as your website. It was

 

38:40

But that has also of course led to here in the digital age as an app that you've developed with a couple of people. Can you tell me about that? Oh yes. So I connected with somebody on LinkedIn who was really passionate about dementia care as well. And she reached out to me and I assisted her with her book on ways to care for a husband with dementia. She's a social worker, so she really focused in on caring for husbands.

 

39:08

And between the two of us, we decided, you know, it would be really helpful to have an app that was developed for people to have quick solutions at their fingertips. So her name is Angela Gentile, and she's in Manitoba, and her son does apps. So he helped us to do the actual app, but Angela and I co-created all the content for this app of ways that, and so it's called Dementia Caregiver Solutions app.

 

39:37

and it had a lot of solutions on how to handle common day-to-day issues that can arise for people that are living with dementia symptoms. Now, is that available on just on the app, any old the app store and Google Play? Yeah, it's only on the, sorry, it's not an, it's only an, sorry, not an Android, it's only an... Apple. ..an ISO or iOS. iOS, iOS. I always get that up, iOS. So, we were only able to make the one type of app.

 

40:07

I would love to see it on others because I have an Android, but I think over time things may develop and change.

 

40:16

But yeah, moving things, even my workshops, all online now, having to go to that online group to support people because we're now in a digital world, but still trying to make sure we support the people who aren't doing the digital world. Yeah, exactly. And that's a lot of people, especially in the aging community. There's people that just aren't as technical. So before we wrap things up, how do people get in touch with you?

 

40:42

Well, they can go to my website, Deme There's a contact us form that they can type in or call our phone number that's on the R1888 number.

 

40:57

I'm always happy to support families. We always give a free 20 minute consultation for families that are struggling, whether they're dealing with Alzheimer's disease or any other type of dementia. So we start there and then we encourage them to come to our free support groups that we do twice a month.

 

41:15

And if people can't come to the support groups on Zoom, because they don't do Zoom, they can call in and I'll just hold the phone up and we've got them on speakerphone so they can still listen. We've done that before. Is that mostly on Zoom or you do do in-person stuff as well? I do in-person, but currently all the support groups that I was doing prior to COVID all got shut down. And so now I'm only doing a support group in Coquitlam.

 

41:45

at the dogwood civilian but i also do support groups within long-term care home so they bring me and monthly i do support groups for the family there let sounds good i think we've covered a lot of bases here karen anything else to add today well you know if i can just quickly say that and i worry about caregivers i've always worried about them and that why i wanted to create the book

 

42:14

the part that can cause burnout. And I don't want caregivers to burn out. And so if I can quickly share three things quickly, if people are listening, if you are a caregiver, please, please, please, from my experience as a dementia consultant over these years, respite, time off is so important and people don't realize that until they take the time off. So please respite, number one.

 

42:35

Number two, talk things out if you're stressed. Go to a support group, talk to a counselor, talk to a dementia consultant, whoever it might be that can help you with the Alzheimer's Society. You've got to get it out, talk things out because you're going to learn things and you're going to hear things differently. And number three is never stop learning. So learn about the condition you're dealing with, learn about ways to cope. For me, those are the top three strategies for caregivers to survive.

 

43:03

It's really great having someone like you in our corner to provide these kind of services. So thank you very, very much from BDA. You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Karen Tyrell, an expert and author on providing care for loved ones facing dementia and Alzheimer's, conditions that we know of course can affect people with developmental disabilities at a higher rate. You can find more information on our company and our books at Deme Karen, thanks again for joining me today.

 

43:32

Thank you once again for having me. I appreciate it. Thanks for listening. See you next time.

 

Good caregivers are few and far between. It's a tough sector to keep staff for several reasons. So what's the answer for supporting an aging population or people with disabilities? Artificial Intelligence is already starting to play a role. We caught up with Mercer Gary from Drexel University in Pennsylvania about the positives and some ethical concerns when it comes to AI and caregiving.

 

TRANSCRIPT

 

Looking to the Future of Caregiving: Artificial Intelligence

00:03

Welcome once again to DDA's podcast, encouraging abilities. I'm your host, DDA communications manager, Evan Kelly. Now I just want a little caveat at the top of this, um, because we are talking about caregiving now, just to understand that developmental disabilities association, DDA is a community living agency that provides over 50 community based programs and services to children and adults with developmental disabilities and their families here in Vancouver and Richmond, British Columbia. So today we are talking about a topic that

 

00:33

It's kind of front and center a lot in the media these days and we're wondering about it how it might affect our lives That is artificial intelligence with the advent of online AI such as chat GPT and other applications for Video and music you name it AI seems to be paving the way forward in many respects But what are the limitations is it good for us is it bad? So today I'm joined by Mercer Gary she is a poss

 

01:00

postdoctoral fellow at the Hastings Center, assistant professor of philosophy at Drexel University in Pennsylvania. She has a PhD in philosophy and women's gender and sexuality studies from the Pennsylvania State University. She looks at conceptual questions and feminist ethics around normative significance of relationships in order to strengthen applied interventions in bioethics and ethics of technology. So,

 

01:29

That's a lot to take in to see with that. I'm not even sure what I read, but definitely some high level thinking there. Thinking there. So thank you for joining me today, Mercer. Great to be here. Thanks for having me. Now I wanted to talk to you because DDA, as I said, is a community living agency. We employ many people in the caregiving field, like in the hundreds, to be clear. And it's a field that is often tough to keep staffed, whether it's lower wages, the battle for the high cost of living here in twenty three, twenty

 

01:59

particularly here in the lower mainland of British Columbia where housing costs are crazy. Also, with the caregiving field, schedules are all over the map. I mean, we have care that is 24-7. Also, with other options, maybe the caregiving field is simply not as attractive as a job. So right now, we're running the risk of not having enough people to look after the most vulnerable. So that's where artificial intelligence...

 

02:28

may come into play, can AI at some point be used to help care for seniors or those with disabilities? Now many companies are developing technology to assist with caregiving and even DDA is working with a local team called Three Spheres of Reciprocity to develop a robot to assist our caregivers. They've actually developed two different kinds of robots at the moment. We're a long way I think from implementing things, but at least it's being looked at. So Mercer, let's get right into it. What...

 

02:56

What got you interested in the line of study that you do? Sure. So my expertise is in feminist care theory, which is kind of an umbrella term that spans some different approaches, but generally is interested in care as both a source of ethical value and a kind of relationship and as a marginalized kind of labor.

 

03:25

So it's really important to me to take into consideration both the side of the person receiving care and the need for receiving care that is dignifying, that is respectful, and that is meeting their needs, while also taking very seriously the way that care work is devalued socially and economically in our society.

 

03:51

and has been historically and currently delegated to some of the most marginalized people, predominantly women of color today. And so my first interest in AI and care came with the advent of social robots that you're already referring to, robots with some kind of capacity for learning, machine learning typically. And this led me to two major questions that have grown in my research.

 

04:20

One is a more abstract one within feminist ethics and the other is a more practical, concrete one in kind of feminist sociology, feminist economics of care. So in feminist ethics, the

 

04:38

The framework of care ethics is grounded in intersubjective relationships and says that those relationships are themselves valuable in a way that's often overlooked and also can give rise to ethical dispositions and ways of thinking about ethics that have not been emphasized in the history of moral philosophy.

 

05:06

So if we're focusing on that central caregiving relationship, it's a pretty big question, who can be party to that relationship? What does that relationship look like? And so when I first started hearing about these social robots, it proved to be a pretty interesting test case of kind of how far does this notion of the caring relationship extend and could it include something like...

 

05:33

a social robot or do we want to draw a line before we include technology in that relationship? So that question became especially interesting because people do seem to develop intense attachments to many social robots and especially ones designed to function as companions.

 

05:58

But a lot of people have some squeamishness and hesitation about the kinds of connections people feel, users feel. And I think there are really philosophically interesting questions about whether that kind of connection between a human user and a robot is capable of generating the same kinds of connections.

 

06:23

ethical value that we typically think of when we think of care. So when we think of AI looking after people, what is the actual potential in your mind?

 

06:37

Yeah, so I think that what's most interesting are the ways that AI might be able to assist us in supporting and valorizing human caregiving work. So I think both because of technological limitations and because of ethical and economic concerns about putting AI in the position of being the sole caregiver, we instead really wanna be thinking about AI in the supporting role.

 

07:06

And so what can artificial intelligence, whether that comes in the form of an AI-driven social robot, or whether it's an algorithm in an electronic chart or a monitoring system in a person's home, how can we use these technologies? And there's such a range of them under this broad umbrella of AI.

 

07:35

to support the real human caregivers, many of whom are unpaid and drastically overburdened, and the people in need of care, many of whom don't have enough say in the direction of their care and enough ability of self-determination within care processes, regardless of their ability. How can AI contribute to making...

 

08:04

the giving and receiving of care better for the people involved. Yeah, exactly. And now, as I mentioned, DDA is working on creating this this robot called Aether. And at the moment, the design is really to have this sort of robot roam around like a group home, for example, looking for spills, looking for, you know, if someone who's fallen and needs help.

 

08:31

you know, maybe identifying an open door or something like that. And even getting to, you know, hoping to get it to sort of recognize people's faces and be able to interact, monitor, you know, medicine timing for medicine, medicine intake, that kind of thing. We're still a little bit a little bit away from that, but I have seen it sort of in practice. What in your experience, what have you seen in terms of practice in the care setting? What are some success stories?

 

09:00

What are some failures or things you might be concerned about? So I've definitely seen robots like the kind you're describing, and they're used in all sorts of things. I mean, they're using customer service. They kind of roam some grocery stores now in different parts of the US and Europe, especially. And there have been...

 

09:27

some significant successes with those kinds of technologies. I think another one that has had some success is a larger robot designed to assist caregiving staff in moving patients, helping someone, pick someone up to both protect the

 

09:54

bodies of the care workers from injury and to make sure that people are, you know, being moved in the ways that they need to in order to not develop sores, etc. So that, I think, has been a significant success in some places. When we think about AI, we think about the

 

10:15

generative AI like chat GPT in the caregiving sector, I think that there's real potential for using it to synthesize research and get kind of a leg up on what is a really vast body of academic research that has the potential to contribute to important policy and practice

 

10:41

but can take a single researcher much longer to do analog by themselves. So those are some different useful ways of employing AI in the care sector. Do you feel this is moving at a... are we starting to embrace this too quickly?

 

11:09

So I think that what is definitely already happening is that these technologies are being driven by commercial demands, market demands. And so what's getting developed and what's getting rolled out?

 

11:34

is heavily influenced by what's going to be most profitable. And so I think what we may be doing too quickly is kind of settling in.

 

11:46

into certain grooves of technological development according to what's going to sell and not adequately exploring and developing other avenues that might actually be benefiting caregivers and care receivers more. Mm-hmm. Now, back to sort of talking about care. Care can be a pretty broad term, I guess. To me, it means comfort. Like, it's one thing to have...

 

12:15

something roam around monitoring falls and spills or medication distribution, but how Do you think AI could bridge that emotional gap?

 

12:25

Yeah, so I definitely agree that care is a broad term and people mean a lot of different things by it. And for a lot of scholars of care ethics, the emotional or relational component and often a kind of connection of empathy between parties and a caregiving relationship is really central. And so,

 

12:53

And within that framework, the ability to give care requires moral agency. It requires people to be, it requires someone who is giving care to be an ethical subject, capable of making decisions, acting on them, and responding with empathy. And so there are.

 

13:18

questions, some of them are kind of technical questions of what AI could do or how we could develop it, but some are much more fundamental about is it possible to generate the kind of consciousness, self-awareness, and emotional connection that is characteristic of caregiving in a...

 

13:42

technological artifact and most people are going to say no to that. It's possible. It might be possible. Who knows? I mean, the way the speed at which this is all sort of developing, to me, like having something that can recognize empathy might not be too far away, but it's hard to say at the moment. Yeah. So, I mean, it's...

 

14:07

It's a really interesting, difficult question because it brings us to what empathy is. If empathy is kind of a shared feeling based in shared understanding, shared vulnerability as a number of kind of philosophers will define it.

 

14:31

the lack of vulnerability on the part of a robot means that it cannot have the capacity for empathy in the way that humans experience it. We can think of even, you know...

 

14:48

I'm sitting here with my dog right now and I know that when I'm with my dog and she sees that I'm crying, she will, you know, reach out and lick my face or there are, you know, signs we see at least what we take to be signs of empathy, perhaps not identical to human empathy, but like it in other animals. But there is.

 

15:14

there's a shared condition of vulnerability there. And that is not something that a robot and a human user would share. Yeah, no, that's very true. Some of the, you know, often when we think of care, we think of people I think typically go to to seniors and people who are, you know, aging. But we deal with people with cognitive impairments and developmental disabilities. What concerns would you have

 

15:43

with AI surrounding care with these people, some who might be nonverbal, who just might not be able to communicate as well. So how do we, I'm gonna have this question a lot, how do we bridge that gap with AI? Yeah, absolutely. So I, disability studies is,

 

16:07

also part of my background and something I'm interested in and committed to. And I do think that especially the question of communication with someone who's nonverbal and the kind of really nuanced and, you know, multi-sensory communication that is

 

16:29

necessary to develop over a period of time between a human caregiver and a person receiving care who's nonverbal. That's a level of kind of sophisticated response that is going, seems to me to be difficult to approximate. So that would certainly be a worry. I think

 

16:55

this kind of broader question of what the integration of technology into caregiving does to the social value of care work.

 

17:05

is a big concern for thinking about care in disabled communities as well as in aging populations. So we currently don't, socially, as a North American society, does not value caregiving very much. We don't pay it well. We don't give good working conditions for it. We don't treat it as a prestigious.

 

17:33

or meaningful job, and we expect it to be something that, again, mostly women do on top of other work, and it's their participation in it is assumed and often not even really confronted to. So that we're integrating.

 

17:59

AI, robots and other AI-driven technologies into caregiving, is that saying that the work is so of such little value that we don't even need a human to provide it?

 

18:20

And if that's the case, then what levels of, what kinds of quality control of the care are we willing to put up with, especially for people who are vulnerable? And so I think that maintaining high quality care requires valuing it both economically and socially. Yeah, absolutely. And that's one of the problems. I mean,

 

18:49

You've hit the nail on the head is that we don't value that work which also you mean you could take it one step further Maybe we don't value seniors or we don't value people with developmental disabilities and it's about Shifting that whole thing. So I mean we can spend billions and billions and billions of dollars in developing AI But it might just be easier to pay people more, you know and create that that social shift to get people to understand that

 

19:17

you know, seniors and people with developmental disabilities, which is going to be all of us at some point, we need to treat, treat them like the human beings they are. But that also sort of, you know, pushes my mind into a whole other sort of sphere of looking at like here in British Columbia, we've worked hard over the last 70 years to get rid of institutions. DDA was very instrumental in creating community living and getting people back into the community. If AI advances that much,

 

19:46

I almost see like a step back into an institution in a way where we've got these people housed in this area where it's just covered by AI and nobody else. I mean that's a sort of a nihilistic way of looking at it, but I mean to me the potential's there. Yeah, I definitely think you're not alone in that.

 

20:07

that concern, that's often this kind of institutionalized AI robot run care facility is a real kind of dystopian scenario that people have been warning others about for as long as these robots have been in development. And I think that some of that is real, especially with the price tag of a lot of this technology,

 

20:36

individuals, families, people living in community, but really has to be bought by institutions. But I think there are a couple of things that might actually work in the other direction. And one of those is the possibility of AI-driven technology to support people living in community or living independently longer.

 

21:01

And the kind of development of that technology has been focused on aging populations, especially as we're confronting real growth of the older population in the U.S. and Canada, as some other countries are already experiencing, and a diminishing number of people capable of caring for them.

 

21:30

there are ways that building AI technology into homes can support independent living. And that might come in the form of, as you were discussing earlier, some monitoring systems that would detect whether a fall has taken place or whether someone hasn't moved in a while, and report that through appropriate channels.

 

22:00

So I think there's potential there, but the biggest question is going to be the price tag. Yeah. And I think, you know, the one thing with seniors and people with disabilities or disability community sort of in general is that as loneliness can be a huge factor in their existence. And it would be nice to see if AI, maybe they don't need help getting into bed or something like that. But, you know, having artificial intelligence around.

 

22:29

where you can have a conversation might dispel some of that loneliness in an artificial way, I guess, but it's, you know, in some cases, it might be better than nothing. Yeah, definitely. I think that those kinds of empirical studies which are being conducted and have been for a number of years now are really interesting. People, it, it,

 

22:55

Some of these socially assisted robots, companion robots especially, even with pretty low levels of artificial intelligence integrated, have been shown to act as kind of conversation pieces in a group living environment and in ways that go beyond kind of initial novelty phases, but really kind of sparking conversation between people about what this object even is. Is it alive?

 

23:23

I really like it, I don't know why, that sort of thing. People do form attachments to these robots and name them and have conversations with them and that happens both with people who experience cognitive impairment but also with people who do not have a cognitive impairment and are very, very clear that this is...

 

23:50

You know, this is this is a robot. This is not a living thing but still express affection for it and You know, yeah as you said there there may be situations where it's better than nothing and although we certainly shouldn't lose sight of the Social conditions that are leaving us with nothing if not other than a social robot. No

 

24:17

This AI is obviously probably creating a whole bunch of new laws that we haven't even thought of. I mean, what if there's AI is in the caregiving sector to some level and there's a mistake and someone dies? Who gets the blame for that? Yeah, this is a huge question and figuring out how to ensure

 

24:46

in the, you know, still heavily involved in reviewing, assessing, auditing the tasks accomplished by the AI in order to have that accountability.

 

25:08

absolutely critical. Where there are algorithms being used in hospitals to make decisions about increasing in medication, something of that nature. There's a recent article in the Washington Post, I believe.

 

25:30

about nurses being, human nurses being overridden by artificial intelligence algorithms on clinical decisions like these and that, you know, becoming a serious problem. And so figuring out how we have these checks built into our AI systems that are going to allow humans to assess what they're doing.

 

25:59

and are going to provide enough transparency for that kind of detailed human assessment is going to be crucial if we're going to use AI in the care sector in these ways.

 

26:23

It's such an important aspect for our lives and almost everything we do. You know, we look at technology in cars these days. There's semi-autonomous driving, or some cars are claiming that they can drive by themselves, but it's still such a difficult thing for humans to actually let go of the wheel and let something else control it, even though statistically it might be better.

 

26:51

for, say, fatalities on the road. And so in care, I think that would be the same thing. Like, how do we as humans let go of that? I mean, not let go of trust, but trust something else that isn't human, even though it might actually make a better decision.

 

27:13

Yeah, and I guess I think that for the development of, we can't just increase trust without increasing trustworthiness in the parties that we're trying to trust, right? So we need to make sure that AI is actually trustworthy, that we know its capabilities and they're consistent and they're,

 

27:43

They're consistent, they're transparent, and we know what to expect from them. Obviously trust isn't, trust requires something of a leap of faith and of going beyond what you explicitly know and can control. But there are, I think both technical,

 

28:11

for technical development and and development of human systems of accountability that will be necessary to have uh... a i dot it's trustworthy and so before we can talk about how to increase human trust in a i think focused on making a i'd trustworthy

 

28:37

And that also covers this idea, not even an idea, this fact that AI, like chat GPT for example, has sometimes made things up. I've read stories where lawyers have tried to drop cases and the chat GPT, or one of them, I'm not sure if it was chat GPT, actually made up cases to back up their argument and they were disbarred by using that. So we, it's, you know.

 

29:06

if it makes something up, but we still need to make sure there's some sort of failsafe, that that's not going to happen, particularly in the care or even the medical field. That seems like vitally important.

 

29:17

Yes, absolutely. Yeah, so again, we have to make sure that there are places for humans to be tracking and auditing what an AI system is doing and capable of catching these hallucinations, as they're called. Your, all of your education and expertise is in

 

29:46

largely in ethics. Are we going down the right path when it comes to caregiving? Um, I'm not confident that we are, especially if we're focused on developing caregiving technology that is going to save and make money, rather than thinking about how we're going to

 

30:16

the really disenfranchised people who are both doing the direct giving of care and the direct receiving of care. So I think that a first step is the meaningful integration of direct care workers and people receiving care, especially disabled people, especially older people.

 

30:42

into the development and implementation processes of AI-driven technologies in this sector. So ultimately, I guess, the ideal thing, unless AI was an absolute perfect thing and had, you know, autonomous robots to do things, that a hybrid model is still really the only best model in a sense. Yes.

 

31:11

a way of combining AI-driven systems with human expertise, human connection, and human accountability processes.

 

31:28

So where would people prefer to receive AI care as opposed to human care and vice versa? Yeah, so you know, because caregiving is caregiving in the experience of dependency, interdependency is so stigmatized in a lot of...

 

31:52

North American culture, especially there are a lot of people who say that, you know, they actually would prefer a robot or an AI driven operating system to respond to them in states of need than another human. So this might especially occur with intimate tasks of bathing,

 

32:17

But it also might occur in moments of emotional vulnerability where a person is, you know, disclosing their own emotional psychological difficulties and has feelings of either

 

32:44

shame in showing that to another human being or an increased feeling of dignity in having some kind of distance from the person or object providing for that need. And so this has come up.

 

33:09

both in disabled communities and also in service members, people in the military who have had more difficulty opening up to, say, a human therapist in the room than a distant

 

33:37

technology driven therapy chat bot. Interesting. And so there are both kind of situational and cultural differences around when we feel comfortable receiving care. And in those cases, some people do seem to prefer

 

34:07

assistive technology instead of humans. There are also questions about how people socialize and how people get their social needs met, and that may not be the same for everyone. There are socially assisted robots that have been designed and tested, especially for children on the autism spectrum, and there's been some significant success there.

 

34:33

with these child users feeling much more socially engaged by this technology than they are able to find at least with their peers at a given age, or some peers at a given age. So I think that there are non-trivial connections that AI systems can make possible.

 

35:03

which of these connections are made possible for people, which ones are developed by companies and which ones are affordable and accessible, and who's involved in the design and implementation process. But there are some potential ways that AI-driven technology might be preferable.

 

35:33

True human person people and that's very interesting. So it looks like the future I don't know if it's bright or dark, but it's definitely interesting as we move forward and into the care field and and AI in general Well, you have been listening to DDA encouraging abilities podcast My guest today has been Mercer Gary Paws postdoctoral fellow at the Hastings Center and assistant professor of philosophy at Drexel University in Pennsylvania We're talking about the future of caregiving

 

36:00

through the potential use of artificial intelligence. It's a fascinating discussion, and certainly something to keep our eyes on. Mercer, thank you for joining me today. Thanks so much for having me. Thanks for listening.

 

In this episode of DDA's Encouraging Abilities podcast, we chat with Angela Faminoff, owner of Travel With Ange travel agency based in Victoria, BC. A champion of the disability community, it's her mission to make sure everyone sees the world.

 

TRANSCRIPT

 

Making Travel Accessible to the Neurodivergent Community

 

00:05

Welcome back to another edition of DDA's Encouraging Abilities podcast. We've been doing the podcast for about a year now and this is podcast number 25. So a bit of a milestone, I think. I'm your host, DDA Communications Manager, Evan Kelly. Summer's here, or so they tell me. Here in Richmond, it's still hitting maybe 23 degrees, just barely. In any case, summer for many families means travel, hitting the road, the skies, even the oceans. Today our guest is Angela Faminoff.

 

00:35

owner operator of Travel with Ange. It's someone we've been wanting to talk to for some time now. Travel with Ange operates like any other travel agency. You can find her at TravelWithAnge.ca for any travel needs you might have. But what makes her business different is that her focus for many years has been on the diversability and neurodivergent communities. Travel for families with diverse abilities can be a challenge. Where to go that's adaptive or autism friendly or

 

01:04

simply accessible can be difficult. So, and she helps families navigate these places to find the best and most inclusive holiday fun. So nice to have you on the show, Ang. Hi, thank you so much, Evan, for having me. My pleasure. First off, I have to I have to ask this because your website mentions a love of Scotland. I too have a big connection there. What is yours? Well, oh, I absolutely love Scotland. We immigrated to Canada when I was three.

 

01:31

and so my Scottish roots run deep and very strong. I still have a lot of family living in Scotland and I don't know about you but when you hear the bagpipes I often get quite teary. Oh aye, I too get teary. My great grandmother was born and raised in Edinburgh. That's about the best Scottish brog that I can do there.

 

02:00

So I've definitely got family back there too. And actually I spent about 16 months there straight in, what year was that? It must've been around 2002. So I'm pretty familiar with the area. So- Oh, that is such a cool opportunity. Yeah, it's, you know, you can't replace that for sure. And that's why travel, I think you'll agree is so important when it comes to life. Oh yes. Yes, absolutely. Now you've, you're-

 

02:29

sort of resume on your online as has a lot to do with, you know, being involved in the disability community. So what got you interested in building a travel agency? I think the desire to work from home gives me the flexibility that I can travel with groups. So my desire is to set up groups, we go traveling, we go on cruises together, we go to resorts, we go wherever you want to go.

 

02:58

And so your focus is traveling with people with diverse needs? Absolutely. Um, I would be the host. Um, we would definitely need caregivers and you know, for safety reasons. So I'm not able to perform that role, but I would be the host. I would set it all up. Make sure everything's working at destination or on a cruise or whatnot, and just be there for, you know, any questions and just to get things running as smoothly as possible.

 

03:28

Well, that's great. So you become the de facto tour guide in a sense. Yeah, yeah, definitely. Well, that's really interesting. I actually didn't get that from your website. Oh, sorry. Yeah, no, that's I have some space booked on cruises and we're looking at land resorts and it just.

 

03:49

I would get as much joy out of traveling as the travelers would. So this is why I'm working from home so I can have this flexibility. Well, that sounds amazing. How long have you been doing this? About five years in the travel industry. Now, you didn't just fall into this. You've been involved in the disability community on many levels. Can you talk about that a little bit? Oh, for sure. Gosh, it goes back to...

 

04:17

grade seven, middle school. We actually had a program at our school that gave us the opportunity to volunteer at a day program. And I just fell in love with the amazing communities, narrow, divergent, diversities. And pretty much my entire working career, other than a stint at McDonald's when I was 16, has been involved with this.

 

04:46

amazing demographic. I went to high school, there was a specific program that gave us practicum experience. It's opened so many doors. When I was in high school and college, all my part-time jobs, I worked one-on-one in folks homes with a lot of the kiddos that I met in the preschool. Oh, my summer jobs back in the day. I grew up in Guelph, Ontario, and they had this camp called Rainbow Day Camp.

 

05:15

in the 80s. And this camp was way ahead of its time with inclusivity. And I was a camp counselor there for a number of years, number of summers. And I also took sign language courses in the evening. I guess overall I've worked, let's see, I've been an educational assistant, community support worker. I'm a former ASL, American Sign Language interpreter.

 

05:42

I've worked within the DeafBlind community, I'm on Pop Hard trains, because I was within the school system, and I actually drove a handy dart for a little while as well. And then so I basically wanted to take all of this and combine it with the travel industry.

 

06:01

And that's unbelievable. I mean, if you ever find yourself living on the lower mainland and need a job, come talk to us. You're what we need. Oh, thank you. And so, when you talk about groups, how big of groups do you actually travel with you? That would vary.

 

06:30

Well, actually, it could be any size. It just depends on the support we would have with our travelers because it depends on the traveler's support needs. Is there one caregiver that could travel with only one individual, or would one caregiver be able to have two or three travelers with them under their care? So it varies. We can go from a group of eight to a group of 20, 30.

 

07:00

you know, as long as there's availability in space and we can do it safely. My big thing is all about safety and the support. Yeah, let's go. So super fun. Yeah, absolutely. Now, you're talking about caregivers. Are these primarily families you're dealing with? Are these sort of like, you know, adults, clients who might be neurodivergent, who just have a have a caregiver and they've decided they want to do this on their own and they've got their caregiver and they've got you. So.

 

07:29

Yes, both. Yeah, families is one aspect, but yeah, my dream is to go with groups of adults wherever they desire to go and just have fun together because, to be honest, I really feel that this demographic has been underserved. Oh, absolutely agree. Yeah, yeah, and I'm here to change that.

 

07:53

Which sort of leads me to the next question. I mean, we're like, I'm pretty involved in, you know, sort of what's happening news and stuff in this in this sector in terms of, you know, what's happening with people with disabilities, whether it's physical or cognitive, you know, how have you seen this sector of the travel industry grow over the past, say, 10 years? I say it is definitely growing. We've got a lot of awareness and acceptance out there. It's becoming

 

08:22

quite prevalent. You know, whether it be Autism Acceptance Month, you know, Down Syndrome Month, Special Olympics, you know, I think the more that's out in our media, the more that people are becoming aware. And everyone has the right to travel. Absolutely. And you know, and one of the things is that in many of these podcasts, I keep sort of pressing the idea that, you know, disability...

 

08:49

is going to touch everybody at some point in your life whether you know someone or whether you You know you all of a sudden realize that You've got a disability because you're older or something isn't working the way it should and that could be physical that can be cognitive I mean, it's gonna affect all of us. We need to start looking at this in a universal fashion. Yeah everywhere 100% yeah, and you know we see lots of stories

 

09:15

uh... these days i'm really coming across our uh... social media feeds is his stories about wheel wheelchairs and airplanes that's a you know plan example of where people are not being looked after uh... yeah definitely that is so frustrating uh... you had mentioned early in one of our conversations that delta is trying to make a big change and i know air canada had stuff in the works with regards to accept ability

 

09:44

um and inclusion i don't know if it's to the same degree um but you know it just blows my mind with with technology and all the engineering that it's taken this long to figure out how to you know bring someone on an airplane in their chair yeah you know and securely tie it down exactly where's the consideration and it's not just that i mean it's

 

10:12

You know, there's a strong advocate on Twitter and she talks about how her, you know, sometimes people's wheelchairs are just basically thrown around, you know, they're just not taking the care. And people don't understand how expensive these items can be. Oh my gosh. Oh my goodness. My goodness. Like, they're tens of thousands of dollars. Yeah, they're like a car. Custom made. Yeah. And they're an extension of who you are.

 

10:38

And it's so frustrating. I've heard and read so many stories of damage. Even one of the persons sitting on the aircraft, looking out the window and seeing their wheelchair being poorly mistreated. Yeah, it's unbelievable. Yeah. So we have to raise that awareness that these are these aren't just seats. These are extensions, as you said, of that person. Yeah, you know. Absolutely. So anyway.

 

11:01

Back to traveling around and hopping around the world. How do you go about finding the best vacation for a family that's got special needs? Let's see. Well, I am certified as an autism travel professional. So I have access to multiple resources with travel directories, including destinations, theme parks, activities, restaurants even.

 

11:29

and you know shops like certain cities are making a real effort to become you know very neurodivergent friendly you know it's just kind of it's amazing actually I mean I know one city Mesa Arizona I haven't had the chance to go yet but would love to take a group there and it's like the city has done so much training and so many different factors

 

11:59

of their industry. Yeah, you know, like things like that are like amazing. So yeah, I have access to a variety of resources. And basically, it's finding out what works for that particular family or that particular individual.

 

12:18

Now, with that in mind, are there sort of areas you kind of like to avoid? I want to make sure that, you know, I understand that anywhere is good for someone to go, but like are there places that you want to sort of steer families away from because they might not be as accessible or as autism friendly, for example? Yeah, definitely. Again, that would be sitting down, figuring out exactly where they want to go.

 

12:48

me doing the research, finding out, you know, making some calls, talking to suppliers, you know, just getting a feel. I have a, you know, network of thousands of colleagues that, you know, we go back and forth and we share information and very candid information, like, don't go there. You know, so, you know, you know, like, why give suppliers the business if they're not going to treat people?

 

13:18

the way they should be treated. Oh, exactly. Now, places like Disneyland, Legoland, a number of the big sort of destination places, they always seem to be upping their inclusion game and making things a lot more autism friendly, which is great. What are you hearing from clients from these locations? Well, actually, I just had a family come back from Legoland in California, and they had a blast.

 

13:48

no issues whatsoever. So I think the fact that the training that comes it's from an outside education source, they will go into Legoland and Disney and whatnot and they will certify them as autism friendly. So it's not it's not just you know Legoland saying oh yeah you know we've done a little bit of this and that so you know they have to go through CRITA or Rigmaral to receive that training.

 

14:16

uh... and i mean that certification and that includes training on uh... you know all staff so it is just a where there and like i know um... one resort uh... beaches you know fandals and beaches beaches had four resorts now and it's the family friendly one where sandalwood just adult right uh... but the the uh... all their staff members

 

14:46

of training with autism. And it goes and it's more intense with the camp counselors, the water staff, but the server in the restaurant has also been certified. So everyone is on board with the whole autism community. Do you find there are certain countries that are doing better at that?

 

15:15

what about canada how are we doing for our sort of vacation destinations yeah again to be honest a lot of people travel away from canada truce it just as far as theme parks go you know we don't have the same uh... opportunity however uh...

 

15:38

I would like I'm in the process of putting together a trip to Banff and have reached out to a variety of suppliers there. You know, here's my situation, here's what I want to do, here's my group of travelers. So it's just a matter of finding the right partners to work with. And most people are like, wow, you know, like, this is really cool. You know, what can we do? So

 

16:06

That's great. I mean, as long as people are coming in with the right attitude, you're going to that's more leading towards success, right? Yeah. I'm wondering. Oh, sorry. No, go ahead. No, I just I I'm just curious. I should actually look into Canada's wonderland and I want. Yeah. I wonder what their accessibility is. I'm going to look into that. Yeah. We've got some homework to do. Exactly. Sorry to put you on the spot.

 

16:34

Yeah, no, that's good. That's a good word. What about cruise lines these days? Yeah, definitely this is forefront for them is accessibility. And I know Royal Caribbean, they're very autistic friendly. And they've done some training and they offer programs. And then majority of cruise lines are all about...

 

17:03

meeting the guest needs. So you know, you can get when it comes to, you know, boarding the ship, or disembarking the ship, you know, they there'll be something set up that you will have assistance so that you can forego all the lines and, you know, just meet the needs of their guests. So and then that's also where I come in and I

 

17:30

you know, touch base with the airline. And, you know, there's a note on their file that one of the travelers is on the spectrum. So it's just a little, you know, note for them when they meet the family that go, oh, okay. And they just have that little bit of extra patience or kindness, you know what I mean? Yep.

 

17:49

Yeah, exactly. Yeah. And like, and to that, we're seeing a lot of I've been seeing a lot of stories about airlines helping families with kids who have autism to do practice runs for boarding and they some airports even have like a sort of a pseudo plane place sort of set up so they can go in and take a look. And are we are we seeing that here so much in Canada? Or is that something like even the cruise industry can look into or? Well, actually, it's interesting you mentioned that.

 

18:20

That has been a dream of mine to do in Victoria for the last three, four years. It's just been this passion project. And so in April of this year, we pulled it together and I partnered with autism, autism BC air Canada. We, the three of us, um, spearheaded our inaugural, we called it YYJ autism aviation day, YYJ being Victoria.

 

18:46

So, and then the Canucks Autism Network partnered with us. Oh, great. And they are absolutely amazing. Yeah. Because they host airport tours in Vancouver quite often. And they also have, if you go online and look at the Vancouver airport, there's a great number of resources for traveling on the spectrum.

 

19:11

So I just wanted to basically, you know, emulate that here in Victoria. So we had, let's see, Autism BC Air Canada brought a plane in. The airport authority and security, basically the day started off, families showed up, went through our registration. They had to go get a boarding pass.

 

19:35

and the flight was called CAN7777, so you know, Kanakauch is the network. It was awesome. And then they had to go through security and then they had to wait, which is real life, and actually the plane was delayed, so it was a longer wait. Yeah, exactly, exactly. And then they got to board the plane and we were on the plane for about 45 minutes. We had a snack,

 

20:03

We went through the safety drills, just chatted. It actually, there were many tears through the day because it was just such an amazing event. And, you know, I'm just getting some thoughts talking about it because it was so wonderful. And we limited the number of participants because it was our first time. And we could have tripled.

 

20:29

like the waitlist. Yeah, you know, so it just shows the need out there. So this will be a definitely an annual event. And then we also had suppliers. After we all you know, got off the plane, we went and had like a little reception and we had cupcakes and snacks and all the suppliers had their table set up and they were fun things for the kids to take home. And so we had beaches, we had Air Canada vacations.

 

20:59

Royal Caribbean and also Huntington Beach in California is embarking on, I'm working closely with them and we're embarking on setting up travel, you know, vacations to Huntington Beach because it's nice and close and there's so much to do and they even have an adapted surf school.

 

21:23

in Huntington Beach. So, you know, it's just reaching out and finding the right connection to the right suppliers and then you want to stick with them and build up your program and just keep going back. And then my dream is say we go to Huntington Beach and we go, you know, once or twice a year, we'll let, you know, connect with day programs down there and meet some friends. And then every time we go back, we visit with our friends and we go and play volleyball on the beach or, you know, just...

 

21:50

Things like that. It just builds a much, much bigger network. Exactly. You know, and it's all based on fun. Now, I hate to ask this kind of question because you do travel with the groups. Is there an added cost for that? Like, how does that work for your own business model? For me, no. I would be, you know, with the groups, I would be covered. What the additional cost would be is bringing the support person.

 

22:20

Yeah, so the I mean, the but I mind you, when you do book a group, you do get a group rate. Right. So it's better than, you know, someone just booking by themselves. So yeah, there would have to be funds available for the caregiver or support person to come along. Is there I mean, if it's if it's just a couple of people and their caregivers, is there still some sort of a cut rate, given the situation or airlines and cruisers like,

 

22:50

Yeah, well, airlines, mind you, support people can travel for a discounted rate. Okay. You know, yeah, depending on, yeah, depending on the level of cognitive awareness. Yeah, yeah. So, no, and then the thing is, again, that's where I try, I reach out and just say, so here's our situation, what can you do for us? You know, like whether it be the resort or the hotel.

 

23:18

You know, or when we're there, can you throw in some, you know, fun activities or an excursion for us? You know, yeah, so I like I'm a huge advocate, as you can tell for, you know, the diversability and neurodiversity. Huge advocate from day one, you know, even my kids when they were little, I mean, they're in their 20s now, but I seeked out a preschool in Coquitlam. We were living

 

23:47

this preschool was known to be inclusive and I would guess maybe half the kids had some sort of disability. So my kids just, it's their norm. They just like, oh, look at that, you know, so and so, you know, can't see, or so and so, you know, is in a wheelchair and, you know, we're friends with some of the families to this day. So it's just, I think, and that's just making it a society norm.

 

24:17

you know, and that hopefully has a ripple effect with my kids. They share that, you know, their experience with others and, you know, call people out if they see something that isn't appropriate. And yeah, you still might be a little bit of the outlier. So when you're in, in your in, not to sound negative, but I mean, in your mind, how is inclusion getting better? How much further do we need to go? I think it's definitely getting better. I think

 

24:46

But boy, we sure have a long way to go. I think it's getting better with what we were talking about earlier with the media covering more events. You look at the Special Olympics just now, the World Games, and I'm just so impressed with the coverage that our athletes received. But back in the day, that wouldn't have happened. Yeah, exactly.

 

25:16

saw on our Facebook feed that we won something like 120 medals at the Special Olympics in Berlin. That was unbelievable. That's incredible. Unbelievable. Yeah. That's such great work. Yeah, so I know and I think that every little bit that's in the media in a positive light makes people go, oh wow, that's really cool, you know.

 

25:41

And they're treated like athletes as they are. Yeah, professional athletes. Exactly. You know? Yeah. So, yeah. Well, Angela, what's... I think that's super cool. Absolutely. What's the best way for people to find you? I guess my website would be good because then from there we have links to my Instagram and Facebook. My Instagram was hacked.

 

26:06

last year. So I am on Instagram. It's not travel with and is travel. There's an F on your website. No on my Instagram, but the website would be www dot travel with and dot ca. Now I just I didn't ask you this earlier, like you really do focus on the the disability and neurodiverse community.

 

26:34

Can anybody just call you for travel? Oh, thanks. Yeah. I'm definitely a full service, full service, um, travel agency. Um, you know, we were talking about Scotland earlier. I have a trip planned, you know, next, uh, August for Scotland and Ireland. And it includes the, you know, royal.

 

26:54

edinburgh military tech you know i've seen all that's all been amazing it incredible gold yeah the funniest thing just a completely nothing to do with this conversation is on the on the royal mile in edinburgh right in the sort of the heart of the entire there's a store called bag pipes galore and okay i think that was funny that made me laugh bagpipes galore

 

27:24

It's crazy. I could go on and on about that. Oh yeah. Yeah. We'll have to talk offline about that. Also, um, you know, someone can, what's that me? You know, my cell numbers on there. I'd love to do virtual chat. And when, when I'm meeting families or adults, I find, you know,

 

27:46

Bring the kids on the meeting because I want to get their perspective of what their dream is for their holiday. You know, so I've done that with families. And so my phone number is 250-885-5417. Yeah, shoot me a text, call me, let's connect with WhatsApp and yeah, just start, you know, talking travel and what are your dreams and let's put it together. Yeah, absolutely. Yeah, yeah.

 

28:15

Anything else to add? I think we covered a lot of stuff there. Let's see. Oh, my mission statement, your mission statement, which is on my business card and my website is short and sweet. Everyone is welcome and included in my world of travel. Perfect. That is my my passion, my my dream. So

 

28:42

Yeah, give me a show and oh, oh, oh, I did start within the last couple of months. I did start a new travel club. Oh, it's called Angus Kindred travel crew. And there's information on the website and it's just, again, putting groups together and let's go and. You know.

 

29:06

Oh goodness, I just get so excited and passionate about this. Good. We need more people like you. Yeah. I just, um, I think let's, you know, if we can travel together as our, as our crew, you know, we can get t-shirts, we can get, you know, lanyards, you know, just go and have fun and embrace travel, embrace each other and just go for it.

 

29:34

Absolutely. I'm here to advocate and make your you know, your travel as smooth as possible and we're to help We're here to help get the word out Yes. Oh, yes. Thank you so much And I really really appreciate this Evan that you take the time to reach out and invite me no problem And we can certainly do this again if you know the more issues or more possibilities pop up for sure

 

29:59

Okay, okay. Well, I'm very grateful and thank you and to all the listeners. Thank you. And I look forward to chatting with you and meeting you soon. All right, so you have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Angela Fominoff, owner operator of Travel with Ange, local travel agency in Victoria that focuses on helping neurodivergent community get out and see the world. Angela, again, thank you so much for joining us today.

 

30:28

Thank you. You take care. Thanks for tuning in again to our little podcast. I'm your host, Evan Kelly. We'll see you next time.

 

A local man is nothing short of a pioneer when it comes to inclusion. Master Michael Sirota has been teaching Taekwondo and Hapkido to the disability community for over 20 years and feels there is nothing they can't accomplish through the practice of martial arts.

 

TRANSCRIPT

Sirota’s Alchymy: A Doorway to Inclusion

 

00:05

We are back with DDA's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today is part two of our Accessible Sports series, and today we're joined by Master Michael Sirota. He owns and operates Sirota's Alchemy, which trains students in the martial arts styles of taekwondo and hapkido. I think I'm saying hapkido correctly. They operate in Richmond and in Steveston Village and Victoria Drive in Vancouver.

 

00:32

Straight from his website, Master Sirota began his journey in martial arts in 1983. Since those humble beginnings, he has immersed himself fully as a martial arts practitioner, athlete, instructor, coach, global pioneer of therapeutic martial arts, and facilitator of global empowerment. He is, but not limited to, an eighth degree black belt in taekwondo, a fifth degree black belt in hapkido, a master instructor, sorry, a master instructor.

 

01:01

certification for both styles and for our particular audience He's got his instructor license in International Disabled Self-Defense Association and International Disabled Self-Defense Association Black Belt now He's received many awards for his efforts in the community and with the Paralympics and the autism community You can find that list on his website website at Sirotasalchemy.com I'll spell that for you. It's S I R O T A S A

 

01:30

LCHYMY.com. Master Sirota, it's great having you here today and thank you for coming into the studio. Oh, it's my pleasure. Thank you. Now tell me a little bit about yourself. Why did you get into martial arts back in the early 80s? Well, I was a child and like most kids...

 

01:48

I had low self-esteem and no confidence, so it was an opportunity for me to, or for my parents to see that I needed something. So I started with martial arts at that time. I really didn't know anything about it. And I just kept going. I never stopped. You just fell in love with it? Yeah, absolutely. And was that taekwondo? It was taekwondo, yes. And so what's the difference between taekwondo and hapkido? Well there's thousands of different martial art systems and styles.

 

02:17

it uh... the marshals is just a little general umbrella for what the split very specific styles arm

 

02:25

You know, I always tell the parents and the students that come to our schools that it's not so much important the style of martial arts, but the school and the philosophy and the methodologies and what they teach and what, if that's in line with your own philosophy and what you want for your child or for yourself. But generally speaking, I would say it's the most popular martial art in the world in terms of number of participants. It's an Olympic sport. It's the most globalized martial art as well. There's a lot of kicking, punching. It's more aerobic.

 

02:54

more skill development, coordination, physical fitness. Hapkido is more of a self-defense martial art. So utilizing more joint knocks, joint manipulation. So we teach it from a defensive point of view where someone, let's say, grabs you or attacks you, how to get away, and then necessarily with kicking and punching. Now, you've got two locations. So how many students are you servicing these days? Right now, between seven to 800 kids or students. Oh, wow.

 

03:22

Wow, that's a lot. Now, COVID must have.

 

03:26

and it hurt you when that started and people stopped going out. Are things sort of back to normal for you guys? Yeah, we're back in full swing. And COVID, of course, it was a... We all had to adjust and adapt and how they say, pivot. And we pivoted instantaneously. So I remember we were... The news came out that we had to shut down. And I think it was like a Tuesday or Wednesday. And then the following day, I had a staff meeting.

 

03:56

we were doing all classes of zoom. Oh wow. And we didn't, you know, that time I had no idea what zoom is and you know and we had to like, you know, I had to go and buy computer screens and you know laptops and everything like that and we just uh you know had to figure out how to use the system and uh you know within two three days we were offering 100 virtual classes. Now do you still offer virtual classes for those people who have a difficult time getting? Uh we don't. Over the months and years we gradually

 

04:26

the virtual classes, it just wasn't any interest. And yeah, but at one point in time, everything was virtual. But right now it's all in person. Okay. So it's clear on your website that working with the disabled community is high on your list of priorities. Why is that?

 

04:44

I believe that's what I'm here to do, that's my path. In a way, when I was running the schools, when I was much younger, I never really thought about, or actually I didn't even know anything about the disability community or what is autism or what's spinal cord injuries, nothing like that. I had...

 

05:09

This was in the 90s, we had some kids in our classes that I felt that they had some challenges and they needed extra support, but I didn't know what kind of support and then I was really oblivious to all of that. Never had any exposure. And, but I knew that martial arts is really beneficial for them. And, but the environment that they were at in, you know, there were too many kids, they needed different type of support. So we decided, I decided to start, you know, a little class for them

 

05:39

get more individualized support and more adaptive to their needs and then from there it just grew exponentially. So how many, is there a certain amount of percentage you would say of your students that are in the disability community? We are at full capacity for quite a few years. We have a wait list for our private lessons for the last, I would say five years plus.

 

06:01

Guessing we'll probably work with about 200 to 250 individuals with various diagnoses. Oh wow, that's actually a fairly significant number. I mean I guess if there's a waitlist as a business owner, that's a good problem to have in a sense. Yes, now the challenge is having enough staff to accommodate the needs. Right, right, of course. Now one of your many accolades, and if you go onto his website, you see all these awards and accolades that Master Sirota has...

 

06:31

has received one is para taekwondo pioneer can you explain what that award is and how you want to come yet so it uh... i don't focus too much on the awards uh... no i appreciate it and i'm grateful for that uh... but years ago i always believe that the marshall artists should be for all

 

06:50

And so I had a vision or a dream that I worked towards manifesting, which was globalizing martial arts for everyone. So I decided to go global and discuss and bring it to the forefront of the, with the World Tag Window Federation at that time and see how we can bring Paratype Window to the Paralympic Games. So I've, at that time, spent a lot of time traveling

 

07:20

over the world bringing my expertise and passion to everyone and try to get the the international support community open their eyes and minds and hearts to people with various challenges and you know

 

07:38

special abilities. And so, Pera Taekwondo is now in the Paralympics? It is, yes. Is that the only martial art in Paralympics right now? No, they have judo as well for people who are visual impaired. Okay, that's interesting. Now, you talk a lot about, I mean, the list of...

 

08:00

services that you provide to to the cognitively cognitive impairment is actually quite long like you'd deal with a lot of different conditions now what is your connection to the world autism festival or the autistic community in general well um...

 

08:14

Most of our students in our therapeutic martial arts program are autistic. I would say maybe 80, 90 percent or maybe even higher. That wasn't what we went after, that demographic. There's just so many more individuals with autism compared to cerebral palsy or down syndrome or spinal cord injury. So we do provide programs for that demographic just because there's more kids.

 

08:44

We're truly, I believe we're all inclusive. We will provide programs for everyone.

 

08:50

So to us, to me personally, it doesn't matter if it's an intellectual impairment or a physical or a sensory, we welcome everyone. So martial arts in your mind is the great leveler of the playing field. Yes, I believe that if it's done properly it will greatly benefit on the physical level, emotionally, develop the self-control, the impulse control, all that kind of stuff.

 

09:20

you've got some high functioning and some is not as high functioning. Is there a specific process that you sort of use for autism or is it really more of a case by case basis?

 

09:32

Yeah, so how it works is, let's say if a family has a child with autism or any other diagnosis, the first step is that we do an informal assessment. So the family comes in, or if it's an adult, an adult will come in, and then we meet him or her, meet the family, just figure out what's the best environment for the student. We offer private lessons, we have group lessons, we have group lessons for younger kids, for older youth, adults.

 

10:02

we kind of determine what's the best path for the child. If they need one-on-one support, then we recommend the private lessons. If they're ready for group integration, then we will recommend that. Now, do you see that as, I mean...

 

10:21

You know, in terms of treating kids with autism, there's lots of different therapies. I mean, we've talked about music therapy and one-on-one therapy. Do you find that martial arts really helps them sort of come out from under the shadow of autism? I believe so. Now I can only speak on what we do. If it's done properly, where we place the emphasis on life skills and place emphasis

 

10:50

and create an individualized approach where it's adaptive to the child or the student, where I strongly believe that martial arts has to be yielding, blending, and adaptive to the student's needs and where they're at their stage of development. And that's what we promote in our school and that's what we implement in our schools. So if we are teaching...

 

11:12

not that where you know it's a mold and everyone has to fit into the mold and yeah it might not be suitable uh... but if we are there's no really mold and we adapt to it uh... it can be extremely beneficial

 

11:26

Obviously, we're not just talking about people with autism. I assume there's other conditions like Down syndrome or CP or something like that. How do they do in your program? They do great. Full stop. You're awesome. They just have...

 

11:45

I truly believe everyone can do it. So I don't put any restrictions. I don't work, and our instructors don't work within any, in the way parameters are within the box. So whatever we believe is applicable, it can help the student, we will apply it.

 

12:02

Fantastic. Now, what is some of the response you get from parents of this particular community? I believe it's all very positive. We have been doing this for, I'd say, about 24 years now, specializing in the special needs programs. We have a fairly large population of kids and youth and adults.

 

12:28

you know i think the best is to every every family will have their own experiences and uh... i wanna you know talk on their behalf but i i do believe it's all very benevolent now what are uh... some of the personal experiences we've seen in outcomes in students with developmental disabilities can you can you identify like one sort of uh... student without naming names of course who like

 

12:50

became, you know, overcame? Generally, well, we have so many positive experiences, but I think that the main thing is the sense of accomplishment, self-confidence, self-esteem, that our facility provides an atmosphere where they can all shine. And that's what we really, that's what I wanna see in the long run, where they become more independent, they become, you know, they feel proud of who they are, they are, you know,

 

13:20

trying to in a way change them we're trying to like okay you have all these skill sets that we let's let's help you become you know better at it and overcome your whatever your imbalances are. Yeah and for your typically developed students are they embracing the the sense of inclusion as well? I feel so we like we do have separate classes depending on the you know we have look for young kids for older like you know beginners intermediate advanced that we

 

13:50

So we have different programs, but when we have events such as rank testings or tournaments or any kind of events, it's all inclusive. So everyone is included. So if you come to our school, you might see someone in a wheelchair, you might see someone with a walking cane, we'll see a lot of kids with autism. That's just who we are. Now, and you mentioned wheelchair, obviously you're going to be a whole other sort of adapted program.

 

14:19

for that. Correct. So we, you know, if they are, if they can't walk, let's say spinal cord injury, so then we will create a program for them where they're utilizing more of their upper body. Oh, I see. That sounds good. Now your website, your website has a page dedicated to disability training, even sightless training. Can you tell me a little bit about that program? Yeah, so,

 

14:46

Many years ago I was, I wanted to expand and I felt, okay, let's...

 

14:52

let's bring the visually impaired community into martial arts, because I feel it could be very beneficial from the self-defense point of view, you know, and just, you know, just martial arts is for all philosophy. So I've created a program where I call it sightless self-defense, where it's based on, not sight, but it's, you know, a tactile, so there, it's more hub-keto based, so there, you know, more sensory, to, you know, people grabbing and, you know, working on self-defense escapes. So, but to me, it's,

 

15:22

If it's adaptive, people with facial impairment can absolutely do martial arts. Now, hap-ki-do, is that what like, I may have asked you this earlier, but I can't quite remember. Now, what's the difference between tai-kuang-do and hap-ki-do? So it's more...

 

15:38

self-defense oriented. So the individuals that say, like we offer, the Sightless Self-Defense Program for, you know, we have in the past where, let's say, a group of adults or we go to another organization or partner with another organization where we, you know, I will go there and actually run the classes. So it's more, like we'll do the striking and the kicking, but, you know, we focus more on the self-defense of where, you know, someone, let's say, grabbing you and how to get away, or someone's grabbing your wrist or grabbing your shirt or things like that.

 

16:08

Mm-hmm, I said that that's what have key dose or the more focus. That's what we teach us. Okay, okay so Use your judge your Jojo's getting they get involved in tournaments We at the moment we focus primarily on like we offer like in-house tournaments like for our students where we'll have our own our own, you know events we in the past we have taken our students to

 

16:36

provincial, national, and even competed internationally as well. And even in the past we would bring some of our paratagmine athletes to international events as well. And so everybody is included in that? Absolutely. No issues whatsoever? No.

 

16:56

Now, you offer one-on-one training for students who may need that assistance. I hate to ask the question, is that more expensive? It is, yes. And what does that cost? So the private lessons, depending on who the instructor is, I would say it's about $95 to $100 per session. And each session is 50 minutes. 50 minutes a session. Seems kind of standard for anything private. That's good.

 

17:26

ages of 6 to 19, then they could use the autism funding for our programs as well. Oh, that's a good point to make. I mean, that funding is through, I guess, autism? It's through the ministry, the provincial government. Is autism the only one that's supported, or can anybody with a disability? At the moment, yes. And I know there's been some talks, and I truly believe it should be for everyone who needs the support.

 

17:56

for now hopefully things will change and there has been some talk about changes but I'm not involved in the political side so I'm not You're just here to teach martial arts Yeah and make a positive difference in the world through martial arts Absolutely now you've got two locations which one opened first? The Richmond one The Richmond one, okay and how long has that been open? So in Richmond we've been since the early 90s

 

18:26

redevelopments in the city and the Vancouver one, we've been at the same location for about, I'd say about 12 years now, maybe even more. Any thoughts about expanding even to more? I would love to, you know that's always, or has been on my mind for quite some time. It's just, my challenge is staffing, you know it takes a lot of time, a long time to develop the positive staff and

 

18:55

experienced staff and so that's the challenge. Well that must be a greater challenge. I mean you're not just hiring anyone off the street. They have to be an expert of martial arts in order to teach it, I would think. They have to have the martial arts skills plus they have to have the, you know, it's very personality based, what we do, so they have to be able to connect with the children, with the students, they have to be able to inspire them.

 

19:17

and motivate them and at the same time provide the discipline, the structure associated. So there's a lot of skill sets involved to be, I feel, a good instructor. Now speaking of training, did you receive any training in teaching people with autism or other disabilities or anything specific? So I'm self-taught.

 

19:40

So like I said earlier, in the early 90s, we had some kids with, I assume, with special needs. I didn't even know what autism was or what. I had like absolutely zero knowledge. And I started doing my own research and this is like before Google or anything like that. So it was like going to like chapters. You had to go to a library? Or libraries. Yeah. There were such things as libraries. And just doing my own research. And then.

 

20:05

and then start and go from there. And then like you mentioned with the visually impaired or people with spinal cord injuries who are in wheelchairs, you know, I would, when I decide to have a program for a visually impaired, I would blindfold myself and figure out what works, what doesn't, and then wheelchair send things in the chair and like decide, you know, figure out how we can teach. And then...

 

20:26

experiment on my own to develop the programs. That's pretty unbelievable. Now when it comes to your own staff, do you provide training for them? Yes, so we do a lot of internal

 

20:41

training. We also, you know, I have traveled to various countries and I have taught other and certified other instructors, other martial arts instructors, on how to teach like therapeutic martial arts and paratheque window. You know, we have a, we even offer an online certification program. We probably have, I'd say, people from about 30 plus countries that have taken our courses and are teaching our philosophies and methodologies. So we,

 

21:11

other than what we offer.

 

21:13

So you're pretty unique in this field around the world. Yes, correct. That's unbelievable. I'm actually quite surprised, pleasantly surprised. And so how many countries have you been working with and where do you go to teach? So pre-COVID, I traveled quite a bit. And then when I was working on the international level, you know, bringing globalizing paratech window, I went to quite a few different places. And then I kind of moved away from that and then started focusing more on our schools

 

21:43

our staff, our students. But I, through martial arts, through Taekwondo, I'm guessing it's been through to 20, 30, maybe 30 countries, maybe more. And spreading the information on therapeutic martial arts. Teaching seminars and presenting anything from, you know, a 10 minute talk to,

 

22:07

I typically would have done 16 hour courses, like a Saturday, Sunday, 8 hours each day. Wow. I mean, I know you said you're not a big awards guy, but I think there should be some more awards in your future. How about the Order of BC or the Governor General's Award? This is all amazing stuff. So how do people get in touch with you?

 

22:29

So we have the two schools where social media were there. Like you said, our website, we have sarosalkimi.com. We also have same websites, martial arts for all, like with the number four. So it's just a little bit easier for people to find it. So if they type in martial arts number for all.com, that's also, I'll go to our website. I wasn't aware of that. That's good, good. Because most people have a hard time spelling alchemy and stuff like that.

 

22:59

our cirrhosis. Is there anything else that you wanted to discuss that you think is important that I've missed or anything? Well, I greatly appreciate this opportunity to share what we do at the Alchemy, our passion, our vision, and we continue to.

 

23:15

want to provide more programs and more services for our inclusive community. So it's a great honour and I feel that there's still a lot more work to be done to truly make these positive changes in our community and our global community. Well it sounds like martial arts is an easy way to do that. Everything you've told me just sounds absolutely amazing.

 

23:42

so i think that covers it uh... you have been listening to dvds encouraging abilities podcast our guest has been master michael Sirota taekwondo and hapkido instructor and owner of sorority alchemy and we've been talking about martial arts programs they offer for people with physical and developmental disabilities it's extremely extensive and as we've learned sort of groundbreaking around the world which is amazing you can check out their website uh... sororities alchemy dot com as well as martial arts

 

24:13

Master Michael Sherwood, thanks again for being here. My pleasure. Thank you for having me here. I am DDA communications manager Evan Kelly Thanks for tuning in. See you next time

 

Adaptive sports are expanding in B.C. In this podcast, we connect with Jade Werger from Sportability BC and what they are doing to improve the lives of people with disabilities. 

 

TRANSCRIPT

Connecting on the Ice and Pitch with SportAbility BC

 

00:06

Hello and welcome to DDA's Encouraging Abilities podcast. I am your host, Evan Kelly, communications manager for Developmental Disabilities Association. Now we've been doing a lot of podcasts on inclusion and accessibility, so today my guest is Jade Werger with SportAbility. This is the first in a series of accessible sports-related podcasts. Now I met Jade at DDA's Leisure Fair in Vancouver a couple of weeks ago, and we had finally got the fair up and running after...

 

00:31

A couple years due to COVID of course was shut down and there were roughly 25 organizations taking part. It was great to see how many options the people with disabilities have now to get moving and staying healthy. All sorts of adaptive sports and inclusive programs are happening in BC these days. Sportability is one of those organizations. Now Jade joined Sportability team in February 2017 as the sport development coordinator. She graduated from Castle...

 

01:01

University in 2013 with a BA in Health Psychology and a minor in Fitness and Sport Science. While attending Castleton, Jade was a member of the Women's Varsity Hockey Team as she holds a master's degree in Kinesiology from UBC where her thesis focused on hockey official penalty decision making. So thanks for joining me today Jade. Yeah thanks for having me Evan. Now this is really curious to me. I grew up playing hockey so I, your thesis is interesting.

 

01:31

hockey penalty decision-making. Can you tell me a bit about that thesis? It sounds interesting. Yeah, so, so kind of, you know, as you mentioned in my introduction there, with my degree, my undergraduate degree in health psychology and fitness and sports science, my interest really lies in sports psychology. So when I was going to UBC and doing my thesis and thinking about, you know, what areas I might want to focus research on,

 

02:00

That's where looking at the cognitive effects on hockey official referees and their penalty decision-making kinda came about and looking at more of the psychological effects on how that could affect their decisions on ice and the games overall. So without getting into too much detail, basically, I recruited local minor hockey officials in

 

02:27

lower mainland of BC and I had experienced officials involved as well who essentially, you know, I used the minor hockey officials to collect live footage of minor hockey games using GoPros on their helmets because I wanted to use this as part of my research to look at these effects to help with referee training and at the minor hockey level. And so a lot of the research

 

02:56

that they use to help train referees, but it's from a spectator's view or a bird's-eye view, which isn't as realistic as having something on someone's helmet where, you know, that's what they're going to see on the ice. So collective videos that way, and then had my experience officials, after I went through video clips and edited pieces where there could potentially be penalty calls, I had the experience officials evaluate watching those clips, whether they were penalties or not.

 

03:25

and that was basically my answer key. And then I used minor hockey officials to then look at those videos and make their call and had that in different video sequence conditions. So basically there was four sequences where they would see. So one would be as if you're watching a game all the way through with information of that game. So the, what you might see on a score clock available.

 

03:53

And then I had that same condition without that information available. And then the other two conditions were randomized with or without information. And really what I was looking for was if game information was going to potentially influence their decision making. So say the home team's up three to one and there's a penalty against that home team. Are we going to see any differences with what they might be watching? And then I also used a.

 

04:21

a existing um... stress questionnaire for officials to uh... that really about you know they was just a questionnaire or it was you know how stressful do you uh... find verbal abuse from coaches and they would read it on on the scale you know i i just find it interesting because i i i uh... did play hockey growing up and i did it the referee for two years uh... was you know you're much much younger probably around the age of sixteen and you know talking about stressors of

 

04:50

you know, parents and coaches yelling at somebody that's that goes into how you might end up officiating your game. Yeah, and obviously, you know, as you mentioned, I have played hockey for most of my life and was fortunate to play in college. And so that's where looking at officials in that sport kind of drew that interest. And I had a bit of a machine and coaching experience as well within hockey. So, yeah, so definitely interesting. You know.

 

05:20

stuff to look at and, and we'll have lots of sports euphemisms. So that tees it up for this. Tell me a little bit about sportability. Yeah, so sportability in a nutshell is a disability sport organization for British Colombians with physical disabilities. So we oversee we're a multi sport organization. So we oversee para hockey or what's better known as sledge hockey, bacha, power chair soccer and para soccer. So we

 

05:49

really our goal is to provide access to sport for persons with disabilities in bc and uh... and that's anywhere from starting out and getting involved at the grassroot level uh... all the way through to high performance so trying to provide those opportunities for different sport pathways uh... so people can participate uh... where where they bet you know where they feel most comfortable now you've got uh... a huge background in sports

 

06:16

you education in sports what got you interested in working for this particular organization yellow i a aside from hockey uh... like on a personal uh... standpoint i crook plane uh... lacrosse it with another one that uh... was kinda keep me in shape for the summer as i got more competitive with hockey and uh... i enjoyed golfing skiing uh... really just being active in now in my adult life just kind of active for life

 

06:45

play, I think, four or five different sports. Some more, some like golf, you know, where it's just in and out, you know, just kind of here and there. And then there's really four sports that I play to in the winter too, in the spring, summer, that are team sports and stuff. So yeah, just personal that way. And then, you know, my education interests there. And then I briefly mentioned, you know, I was involved in rafting and I was coaching

 

07:15

U18 girls rep team when I was finishing my math or doing my master's as well. So kind of that coaching side and really when it was nearing the end of my master's degree I was on a contract student position with Pacific sport Fraser Valley. So my job there was a physical literacy coordinator. So I was doing a lot of general just physical literacy or fundamental movement skills and

 

07:44

really just getting kids active. So whether that was through sport or recreation with Pacific sport. And then as I was nearing the end of my masters and that contract was kind of timing with that, I was looking to get into a full-time career and in the sport field and just looking for that job. There was a position with sport ability at the time for full-time positions. So

 

08:11

Yeah, just interviewed there and, you know, here I am today, I guess six years later it worked out. So yeah, that's how I got involved in that. So as it has, you know, being involved with athletes with disabilities, that has that opened up your your eyes and your mind a little bit in terms of sport? Yeah, yeah. So and that was something I, you know, I've had this conversation with other people, you know, they've asked how I got involved or what kind of

 

08:39

drove me to adaptive sport or working with persons with disabilities. And I guess when I applied, you know, I wasn't really thinking too much of whether it's mainstream sport or, you know, a different avenue with adaptive sport that would be new. And I had a bit of education, you know, maybe a class or two where we talked about, you know, human growth and development and we would touch on different things of...

 

09:05

uh... disabilities and things like that but it wasn't a primary focus like say somebody in recreational therapy for me uh... so yeah it was it was really new in terms of who i was serving in who i was working with uh... coming into sport ability but really you know not to sound cliche or anything but it really is uh... and you you just adapted

 

09:34

Yeah, so I mean, I just really learned, I guess, along the way in terms of just from, you know, athletes that I work with themselves or coaches about, you know, maybe the different adaptions or maybe understanding their disabilities a little bit more. But yeah, I mean, even today, it's not a, I go and it's not a primary thing I'm focused on of what's this person's disability. You do obviously it's important to know and acknowledge because

 

10:03

that's helpful information to know, but I mean, typically I just ask the individual, you know, as an example, like, how are you most comfortable transferring from your chair to the sled? I'm not going to tell you how to do that, you know, you know your body the best. I think it's, you know, and that can be different for everybody, even if they do have a similar disability than someone else, it still could be very different. So, yeah,

 

10:33

I'm not afraid to ask somebody a question. Obviously I'm trying to be respectful and understand what works best for them because I want them to have the best experience. So yeah, that's kind of been my approach of really just being open to learning and yeah, really just chatting with people and getting to know them and seeing where they're comfortable in terms of if there are certain...

 

11:00

adaptions we have to make to say like equipment's the biggest part where we have to make different adaptions. Even, even if it is adaptive equipment, you know, like I said, everybody's different. Sometimes we need to figure out a way to even make that that work for different individuals as well. Of course, that's not a one size fits all kind of thing. Yeah. So, the sport ability, I know you facilitate, you know,

 

11:27

soccer and hockey. Do you actually train athletes in these vocations if you will? Like have you got training programs? Yeah, so the way we kind of touch on all different areas. So programs, so something like a weekly program, we try and like depending on the sport there are different programs across the province in different locations and that's really

 

11:56

where there's the resources and the partnerships that we work with because we're, you know, we're located in Vancouver, we're a small organization, there can't, we can't be everywhere at once. So really building relationships for coaches or community partners and facilities to get things, you know, up and running and happening on a regular basis so people can access these types of programs.

 

12:24

That's a huge thing with us and volunteers and everything. So that's kind of the program side of things. And then in terms of, you know, I touched on the different pathways. So say somebody trying to progress to a competitive stream, that's where we'll find typically, well, everyone really the volunteers is the coaches and stuff. Typically at the high performance level,

 

12:53

those coaches, I mean, at least right now, have some sort of connection to that sport. So whether they're a family member or they've worked with us before, say as a summer student or something that have just really been interested and wanna support and help out, that's really at the high performance level of where those people come into place and officials and everything.

 

13:20

But we also offer training camps throughout the year to really kind of a mix of two things. One, to whether it might be helping maybe gain more interest in the community. That's a new program. Us being there trying to build up and help those leaders who've said they'll support, but they need a bit more training or resources or just opportunity to connect with us and our athletes that have been playing a while. That's always a helpful thing.

 

13:49

We'll hold those camps for that, for recruitment, and then also just the high performance side of things. So say a provincial team, they'll have private camps that will be for their training to help them, you know, train for their competition that we go into. So with the high performance teams, that's typically a Canadian national championship that they train for throughout the year to then compete against other provinces.

 

14:18

at the end of the season. Now, I've got a son who plays soccer and, you know, growing up finding coaches, you know, even sometimes finding officials for, you know, typically developed kids is sometimes difficult. Do you is it is it easy to find coaches to come in? And that said, are these specialized coaches as well? Yeah, so I guess it would it would.

 

14:45

I wouldn't say easy. I mean, you're asking volunteers to commit quite a bit of their time. It's really hit or miss, I think, depending on the situation, the sports. And yeah, so what that looks like. So as an example for a situation, so we have community coaches. So people that are volunteers that run a weekly program.

 

15:14

you know, in Vancouver, say. Those volunteers are, the way that I've kind of connected with them is really through things like Volunteer Connector, connecting with university programs, so say UBC-KIN or UFB-KIN, and yeah, just really, and even partners there. So we have some teachers that we've connected with to do.

 

15:42

you know, information talks for their adapted sport class that then we're speaking to the students that can help, that might be interested in getting volunteer hours or getting involved to help, you know, maybe their goal is physiotherapy down the road. And even things like that Sunset Community Center that we met at for the Disability Association there.

 

16:06

um you know that's a way for us to get visible and and be open to recruiting volunteers and or participants so a ton of our volunteers are are just people that you know are looking for opportunities to volunteer and then they really learn um we mentor them and provide them resources and training to talk about the sports and working with uh persons with disabilities um

 

16:32

But people that are involved more at the high performance level typically tend to be volunteers that have another connection. So whether they're a family member of one of the athletes or like our provincial botchia coach, she used to be a former employee with us and, you know, really took to botchia and had that knowledge when she worked with us and was interested in coaching. So, yeah, so it all kind of varies.

 

17:01

The community partners, you know, I mentioned are huge with getting programs going. So an example of where we have those is in Prince George, the Northern Adapted Sport Association. They oversee para hockey there and they also oversee other adapted sports like basketball and things like that. And then in Kamloops, Kamloops Adapted Sport Association was involved with us in beginning with the Kamloops.

 

17:30

Parahockey program, but also Pacific Sport Interior has been a partner there. So yeah, it really varies on, I think the situation, the program support and then the event support and the high performance team support. So yeah, and then in terms of officials, it's same thing we kind of do with our community coach call outs.

 

17:59

when we put on volunteer connector or reach out to universities and different things, we'll use to put out there when we're looking for to host a referee clinic for one of our sports. And then just hope people sign up and mentor them and stick around. But even in, even we found with, as example, with our botcha referees, they're the ones that typically

 

18:27

stick with it and are really helpful for somebody that's had a connection to the sport somehow. So it really seems to be that tight-knit community. That's great. Now, sportability, like in the drop-down on your website, you offer a few different sports. You've got power soccer, you've got the sledge hockey, the boccia, which you've...

 

18:50

I'm not sure if I'm saying that correctly. Is those those are the sports that you focus on or is there like more to it? Yeah, so we have four sports. So I think para soccer is back up on our website. So yeah, so para hockey or sledge hockey, I could give a brief description of each sport just for the listeners. If you call power soccer, what do you mean by power soccer?

 

19:18

Yeah, so power soccer is power wheelchair soccer. So it's a form of soccer used by power wheelchair users. So we play typically in a gym with an oversized soccer ball that's about 13 inches. And on the front of each person's power chair, they use a what we call a guard. So it's either a plastic or metal essentially kind of bumper that we attach onto the front of their chair and they're, they're able to use that to

 

19:48

kick the soccer ball and the soccer ball is larger, partially for visibility just if you were sitting in a power chair using it so you can see it in front of you, but also just so it doesn't get stuck under the guard or under the chair, you know, to then wedge there. So in power soccer at a game, there's usually a goalie on each team. So you set up nets with the large cones in the gym.

 

20:15

And then there's three players each on the floor. So four for each team total. And you just, yeah, the goal is a lot of very similar rules to mainstream soccer, but yeah, really just trying to get the ball in the net to score goals and win. And there's some different rules within that in terms of two on ones and being in the crease and things like that. And power soccer.

 

20:43

isn't yet a Paralympic sport, but it is a World Cup sport. Oh, it sounds that sounds great. I mean, I actually it actually sounds fun. Yeah, it's very cool to watch. And even in power soccer, there is a specific sport chair that can be bought and used for power soccer that basically is more agile quick. So it allows for more power when kicking the ball and things like that versus a everyday chair.

 

21:12

Now for sledge hockey, we're Canadian, we like hockey. Are the rules primarily the same? Yeah, very much so. So it's really all the same rules as standup hockey. There's a couple of different penalties. So there is one called stabbing, which is what it is, sounds like. Because yeah, in para hockey, there's to...

 

21:40

push yourself on the ice, you have two, essentially two small hockey sticks that have, you know, the curved blade on the end to shoot and pass, but on the other end are ice picks. And that's what you use to push yourself on the ice. So you, if you've got a stabbing penalty, that would be using your stick to stab an opponent. You know, hopefully people don't do that. I guess that's kind of like slashing in it. Yeah, yeah. But that sounds more painful. A little bit more, it would be a major.

 

22:08

And then there's also a penalty called T-boning. So that would be when you use the front of your sled to ram or run into another person's sled from the side, front, back. I would call it something similar to like a check from behind. It's a dangerous play. You're not to use your sled as a bumper car as a weapon, right, to hurt because they're steel.

 

22:33

So if you got hit in the side of the leg with that at a pretty decent speed, that wouldn't be great. But yeah, everything else in terms of the rules are the same. Different things that kind of come up are like to call an offside, you would call that based on where the blades cross the blue line, because depending on the individual, so say there's somebody that has a double leg amputee, they would have a shorter sled nose, like where their nose is on the sled,

 

23:03

um you know maybe plays that have spina bifida say um that their sled's longer um has any of that room for their legs that um yeah calling an offside you would call it by the blades versus the the nose of the sled um so yeah so a couple different things but um yeah I mean if you watched a game it wouldn't be anything

 

23:26

different than you watching, you know, mainstream hockey games. Now officiating for sledge hockey, are the officials have to be in one of those devices as well or can they just be typically developed or someone who doesn't have a disability? Yeah, so yeah that's a good question. So I've only seen stand-up officials in para hockey, so officials that, you know, use

 

23:55

skates on their feet and officiate it. It's helpful in terms of, I think, one, seeing the play, because you're able to look down, since everybody's sitting in the floods. And also, just if, I think if there was an injury or if you need to get somebody out of a scrum or whatever, getting in there is a bit easier than if you were using a flood. And same with dropping the puck and things like that. But I...

 

24:25

I yeah, like I said, I've never seen somebody officiate in a sled, but I'm sure it went, you know, if that opportunity came up, it would definitely be up for discussion, I'm sure. You know, depending what level it was, it was taking place at. Sure. Now you've got you've got bocce ball and what other sports? And para soccer. Para soccer and power soccer are two different things, are they? Yeah, correct. So para soccer is a is a version of stand up soccer.

 

24:54

So it was, I think it was originally called Seven of Side Soccer, but they've changed it to Parasoccer. But essentially it's shorter fields, smaller nets, and it's really a game that was developed for people that might have say a low level of CP, so they're ambulatory, but maybe their gate or their energy is affected because of their disability that playing in mainstream soccer would be challenging.

 

25:22

or somebody with a brain injury, things like that. So yeah, so it's nice to have because I often find chatting with people, they're people that have disabilities where they're often told they might not be disabled enough or, you know, or there might be, you know, it's not completely visible to.

 

25:50

to everybody. So it's nice to have a sport where it's essentially made for that group of people because often other adapted sports that might be something where you know they might not be what we call classifiable in that sport if they wanted to say compete at a high level or again in mainstream sport it's challenging because their disability is affecting you know

 

26:20

really being able to enjoy it and keep up and have fun, right? So yeah, so that's where para soccer is, in my mind, is a very niche group. And I love, you know, with soccer being such a huge sport really around the world, it's, I'm glad to see that there's an option there for everybody.

 

26:40

Yeah, you know, with the power soccer and yeah, so and everything to use. So are your services primarily for people with physical disabilities or are there athletes with developmental disabilities as well? Yeah, so our mandate and our really who we serve is is persons with physical disabilities. But we have had athletes that they might have a dual diagnosis. So developmental and physical disability. And really.

 

27:09

a program level, so community weekly, everyday program, if somebody with developmental disability wanted to come and play, we're not going to turn them away. But if that person was looking to get into high performance, that's where the classification starts to come in, where they have to meet a criteria essentially to participate at that level.

 

27:37

And then also just looking at, because this is a question I get quite often from people, you know, looking to get involved in sport is something, a tool that I have is, you know, knowing about other sport organizations for persons with developmental disabilities as well. Because I'll get asked often, you know, well, is my child able to participate in the sport and, you know, what would be the best way?

 

28:05

other organizations that focus on persons with developmental disabilities, it's nice to have and being able to provide people with those spaces because ultimately they're going to have a better experience with that focus to help with their needs as well. So yeah, so there's a reason all these different organizations exist, right? Yeah, exactly. Yeah, so we, like I said, like we don't...

 

28:35

turn people away at a community level or even say a local event if we're having like a fun tournament or something. But as you know if somebody was looking to progress in sport there are there's a classification system at that level where people are assessed and part of that assessment is their disability. Now how have you seen this sort of sector grow over the past few years?

 

29:02

Yeah, it's why I mean, we had the COVID break there. So that was a bit weird. But the last couple years, you know, it's been great to see people back out. I think I would like to be optimistic and think that the world is becoming more aware of ableism and just being more aware of, you know, considering everybody when say building something or in, you know, hosting an event.

 

29:32

you know, I feel like I've noticed it in certain situations. But yeah, there's still a ton of work to do. I mean, even like the Paralympics, I think it was, this was probably maybe only the second year or so that even Paralympic sports were televised. You know, so it's that that tells you something in terms of where we're headed in a positive way. But it also just kind of shows how

 

30:02

um some stuff is too right so yeah now in export ability has the their four core sports are you planning on expanding that at all I know where where we're pretty busy what we got I'm we actually and before my time we actually still receive a lot of I think there's about seven or eight sports my colleague he's our executive director I'm you know quite a few years ago was in my position and yeah I don't know how he

 

30:30

oversaw so many sports. But yeah, what it really comes down to is, because we're a non-profit, is the funding, right? So if we have too many sports under our mandate, we have to split up that funding even more so, and then are we able to deliver in an effective way? Yeah, good point. So it's kind of that balance as well of, you know, what's in our capacity.

 

30:59

And that's capacity staff wise or funding wise and everything because we want, you know, we want to be able to offer good services, right? So. Yeah. So where does, where does SportAbility get its funding? So majority of our funding is through government grants. So ViaSport is our sports sector leader. So basically how that works is they receive funding for sports for BC from the government.

 

31:28

We provide like we as a sports association amongst every other sport organization in BC provide you know feedback on where we would like to put funding where we see needs and you know they communicate that with the government because they have their say as well and then really they develop these grants based on all that information and feedback where we can apply for things.

 

31:55

and be able to deliver on that. So that's majority of our funding. And then we look at other different types of funding. Like I think different banks have some grants that come out. We have our national sport organizations that provide that sport specific funding for us to apply for for different projects. And then also, you know, fundraising and

 

32:23

Yeah, really looking at different ways to diversify funding is something that's, you know, kind of ongoing. Because you never really guaranteed anything. Yeah, exactly. You always have to apply for it, right? So yeah, and it's good to mix things up a bit and have different resources. And really, again, it goes back to even just building, you know, strong relationships, even to have something sustainable moving forward as well. Absolutely. So last and final question, how do people get in touch with you for more information?

 

32:52

Yeah, so best way to get in touch with me is through email and that would be my first name, Jade, J-A-D-E, last name, Werger, W-E-R-G-E-R, at sportabilitybc.ca. They can also check out our website just to kind of learn more information and maybe see where active programs are and just learn about our different sports and that's on our website at sportabilitybc.ca.

 

33:21

And then we also have our telephone number, which, the phone number off the top of my head is 604-324-1411. And that just goes to our office. But yeah, usually email is a best way to reach me at, to kind of in and out quite a bit. Well, that's great. I think that about wraps it up, Jade. I think we've covered all the little facets of sportability. So thank you very much for joining me today.

 

33:47

Yeah, thank you. And yeah, I encourage people if you don't see anything on our website or you didn't hear anything today that you had questions about, to please contact me. Even if there's not a existing program, say in your community, it's something we're always looking to expand and offer just so more people can have access. Fantastic.

 

34:09

You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Jade Werger, the Sport Development Coordinator for SportAbility BC. Stay tuned for parts two and three of our Adaptive Sports series. I am your host, Evan Kelly. Thanks for listening.

 

The City of Vancouver is making strides with its Accessibility Strategy. DDA chats with the city's Accessibility Planner, Karen Lai who offers perspectives from her lived experiences.

 

TRANSCRIPT

Changing Attitudes One Street at a Time

 

00:06

Hello and welcome back to another episode of Developmental Disabilities Association's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Joining me today is the City of Vancouver's Accessibility Planner, Karen Lye. Karen has worked in accessibility and inclusion consultation for over 20 years.

 

00:25

Now as someone with cerebral palsy, Karen brings a lived experience to her work and an understanding of the limitations that society places on people with disabilities. She has previously done work which helped some people with disabilities integrate into workplaces. She runs her own consulting firm where she ran workshops and developed budgets for inclusion initiatives and worked with many non-profits to improve their accessibility. She holds a master's degree in human kinetics from UBC

 

00:55

2020 award by the YWCA of Metro Vancouver. So thanks for joining me today, Karen. Thank you for the invitation. Now, we'll get to inclusion and accessibility in a moment, but tell us a little bit about yourself. Yeah. Thank you. I was born and raised in Vancouver and I

 

01:21

have been doing much work in improving accessibility. That's what I do for work. But at the same time, I am very...

 

01:41

hanging out in the outdoors with my friends and going the long bike ride with my bike. But yeah, I've been in the field of inclusion and accessibility for well over 20 years, and I'm continually learning about this area.

 

02:11

So in sort of in a nutshell, Karen, what does accessibility mean to you? Well, accessibility means to me, it's more than the built environment. It's that once you get in the door, are you able to feel like your decisions matter? Like do you have a role in the decision making?

 

02:39

Do you have a role in the workplace? Is it more than just physically getting in the door? It's...

 

02:52

It's getting you what role to play in the larger game of community. Yeah, that's just it. I mean, it's it's, you know, that whole thing. Nothing about us without us, you know, making sure that that anything that is created accessible is created from those with disabilities, their point of view.

 

03:21

Right, right. And it's also about do you feel valued? Do you feel belong? And it's not just about your own physical space. It's also do you have an opportunity to go in other people's houses, but closer and closer. So, um, it's also

 

03:51

and accessibility from a community perspective, not just at the places where you move around, but do you have the ability to go over to a friend's place or whatever, because those need to be accessible as well.

 

04:18

Yeah, like everything. And you know, I've been talking a lot about accessibility with with other people on this podcast and how even businesses need to be more accessible because if you can't get people into your store, you're not selling as much as you can. There's a huge motivation for businesses just by themselves to be accessible to everyone. Totally. Yeah.

 

04:47

I agree. Now, I took a little line from your LinkedIn page. You say inclusion is a two way street. Can you expand on that a little bit? Yeah, I think we all have a role to play in advocating. The one individual that knows me the best.

 

05:16

is myself. Though I have a role to play in telling others what kind of needs I have, what support I need, how do you work with me, though that's my role. And if the other people's role is to create a culture of

 

05:43

welcomeness. You allow me to tell you what I need. There is a two-way street in that we both need to work together to create an environment where we all can work well together, though we both have a role to play.

 

06:09

And how do you think that conversation is going over the, you know, when you look back on your life and what you've managed to accomplish, to accomplish in spite of a disability, do you think that conversation, you know, with people like me who don't identify with a disability, do you think that conversation is getting better? Do you think the messages are getting out there? Do you think the support is improving?

 

06:35

I think as a body, physical activity, physical sensibility, it's relatively well. It's not perfect. But I think we have a long way to go in terms of attitude, in terms of accepting the culture. It is.

 

07:04

about shifting the culture, slowing down your peace. We live in such a fat, big world. And in slowing down and really building that relationship, and really getting to know people and connecting with people. Yeah, I think it's...

 

07:34

It's growing, it's increasing in small increments. And it also depends on the person as well. We're all human beings with so much complexity to each individual. We carry so many complex identities.

 

08:02

And it changes from people to people. Now going back, you did your studies in human kinetics, and you've got a master's in that from UBC. How did that alter the way you view your own disability?

 

08:20

Um, I think it advanced this because I really thought, uh, before I did my master's, I really struggled with the word inclusion and what it means to feel included. And, um, I, I really believed that inclusion was about

 

08:50

putting everyone in one room, no matter what their disability is, and just building a program from that, from one room. But because we, because in this best, I learned from my master's,

 

09:13

about intersectionality and how we're so complex beings that putting everyone in one room is not inclusive. Because how can you have one program that meets every person's needs?

 

09:43

and not but the book that i would want program meeting and but the uh... no i think included and they're very happy in did that uh... i'm and that that included in that map long contract then what

 

10:12

in and around that does make that a much, much more complex thing. But you know, sort of going back to accessibility, which is, you know, what you like to talk about is the idea of...

 

10:26

universal design. Now you just mentioned that inclusion can be a very individual thing. If we're talking about accessibility, do you think universal design is really possible or can we just only hope to get as close as we can?

 

10:45

I think there's so much more work that can be done, but that's just a baseline. Universal Design, I don't think... I mean, what is an accessible city? I don't even know what that means, because...

 

11:09

And acceptable study can mean one thing to me and one thing to a different person. So I think a universal design is a good goal to reach too, and then we need to do more. So we should be a little bit realistic about that, I guess. Yes, yes, absolutely.

 

11:37

Now I want to ask you something else before we start getting into you know your work with the city is I don't know what is it adventure therapy and what does it offer that other kinds of therapies don't. And then the power of the outdoor. So what what one could then learn from being on a outdoor trip.

 

12:06

There's so much I used to do with adaptive kayaking, adaptive skiing, where people with disabilities or other ones can gain confidence by being in the outdoors. There's something better about being in the outdoors.

 

12:36

where you learn new skills and you learn how to create new opportunities. Just from being creative and working beyond their box. And you learn, you always learn something new from being in the outdoors.

 

13:04

and with each other. So that's what a best friend film would be me.

 

13:13

And you find that more, you know, for someone with a disability, is that a more effective therapy than other things you've done? It definitely did... did one thing for my life. I won't be the other people's life. It definitely brought out...

 

13:42

new perspective of how I defined my own disability and how I determined new ways of learning about myself and about my own disability with the power of the outdoors.

 

14:08

Sounds good. That sounds really good. I think we see a lot of different.

 

14:14

things now in the outdoors and it's just so nice to see even the outdoors, not just buildings we build that are becoming more inclusive for everybody. But now switching to the City of Vancouver where you find yourself, like a number of other municipalities across Canada right now, they're developing accessibility strategies. DDA, we've got a member of our staff who's involved in Vancouver's consultation process. The strategy, as I understand, is now in its second stage.

 

14:43

So tell me how and why this whole accessibility strategy came about. Well, so firstly, the provincial BV government passed the Accessible BV Act back in 2021.

 

15:07

where it mandated all of the prescribed organizations, meaning municipalities, to meet three requirements. Do you have an accessibility plan? Do you have an

 

15:35

Vancouver was one of the first municipalities to start inventability conservation way before the Inventable BC Act came into place. It was directed from council in 2018.

 

16:01

to develop an accessibility strategy. And it's also mandated as to put together an accessibility task force. And it is made up of people with lived experience with from

 

16:28

two of council committees and then the task force would guide the development of the accessibility

 

16:56

We developed the Phase 1 of the accessibility strategy, and now we're working on Phase 2. So what was the goal of Phase 1?

 

17:13

do highlight eight different focus areas and also do create a comprehensive citywide accessibility

 

17:44

You look at the built environment, housing, communication from an accessibility lens. It was divided into eight different focus areas and they range from built environment, transportation, housing, information and communication.

 

18:12

employment, government and engagement, capacity and collaboration, and then advocacy and working with other orders of government along with other agencies. So those are the eight different focus

 

18:43

um, game with high level access to the item to increase accessibility. Now, is that mainly to provide, um, guidelines for, for, um, city staff and city infrastructure, or is it really to make sure that, that we've got bricks and mortar and, and making physical changes to things?

 

19:13

Is it really both? And then faith do is kind of building the multi-year action plan. So we don't really know how, what are the details of each action item. And that will come later on in the faith. But mainly it's a guide of where they...

 

19:40

where departments are working towards, he increased accessibility in the city of Vancouver. Now, you know, even just going back a little bit, I know you're working on this accessibility strategy, parts one and two. Where do you see room for improvement in the city of Vancouver's approach to accessibility?

 

20:08

I've been, you know, city of Vancouver and we have done so many things to increase visibility, but at the same time, we have a long way to go. And it's creating that consciousness of automatically thinking about people with disabilities.

 

20:38

and how we do our engagement, how we do our design of buildings, how we design blubber

 

21:03

Now, so I mean, at the end of the day, a lot of this just comes down to prevailing attitudes about people with developmental or disabilities of any kind really, that somehow they're less, that they're not worthy of taking these things into current consideration. Would you say that's correct?

 

21:23

It depends on the people, you know, and yes, I think we have a long way to go in attitudes and changing the narrative of people with disabilities, but we have done a lot in terms of...

 

21:46

I think we have a new back training of disability awareness. We are getting there, but we have a long way to go. Now, say the city of Vancouver granted you an unlimited budget and total creative control. What's a dream project you would love to undertake? I would really love to do...

 

22:16

work with the ultimate change maker.

 

22:24

How do we build a culture of vulnerability and meet people where they're at? You know, and you talk about attitudes, you talk about people thinking less than or ableism. And I would really love to work with senior leaders in terms of

 

22:53

How do we really and truly embed a culture of kindness, a culture of vulnerability, so that it would trickle down to how we automatically think of everyone?

 

23:16

Mm-hmm. That's a big mountain to move, I think. Don't do it. Don't do it. And so, in your work advocating for inclusion, what approach do you take towards people who are resistant or skeptical to some of these changes?

 

23:38

You know, I like to meet people with curiosity. And I like to say, you know why? And then come up with a mind of wonder and say, why are there some aspects you don't like, or what is it that makes you think?

 

24:06

like this because we could never we could never assume why they are listed this

 

24:30

So right now are there any city of Vancouver projects you're particularly excited about outside of the accessibility strategy? Well, I don't really know how to answer that because accessibility strategy is my main project. So I can't really tell you what my other projects are.

 

25:00

And disability is all that I do. But I do enjoy working with other departments. I do enjoy working with them to shift their narrative of people with disabilities and working with other departments.

 

25:26

Do you have any final thoughts on accessibility and how Vancouver and British Columbia in general is doing when it comes to accessibility? You know, having been born and raised here and having a very, you know, limited experience in terms of travel.

 

25:54

And golden to me, I think Vancouver, city of Vancouver is on the right track. Um, we have a long way to go, but, um, I think slowly but surely.

 

26:15

Yes, and I think attitudes here are typically a little bit better than other parts of the world, from what I've seen. But on a more deeper personal level, do you feel included here? I worked really hard to develop a community of friends. And...

 

26:45

family, you feel included. I've worked really hard in terms of myself and where my disability falls and how my disability plays out in my own life. So speaking for me, I've worked

 

27:13

really hard to do that. And then from how I turned my disability in my own life, I could build a community that I still included. That took a long time to do that.

 

27:40

So now I feel like it's just a long time. So I want to thank you for joining us today and talking about some exciting things you're working on with the city of Vancouver.

 

27:53

You have been listening to DDA's Encouraging Abilities podcast. Our guest today you're listening to is Karen Lai. She's the accessibility planner with the City of Vancouver, where she's making great strides in improving inclusion and accessibility for the disability community here in British Columbia. Karen, thank you so much for joining me today.

 

28:14

You're welcome. And it was a great opportunity to come here today. Thank you very much. I'm Evan Kelly, DDA Communications Manager. We'll see you next time.

 

Success will come when advocating and fostering change in prevailing attitudes when it comes to disabilities. In this episode of DDA's Encouraging Abilities podcast, we chat with well-known disability advocate Spencer van Vloten who prides himself on being a champion for the disability community.

 

TRANSCRIPT

 

DDA Chats with Disability Advocate Spencer van Vloten

 

00:06

So welcome to another DDA Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. Today we're joined by Spencer Van Vlaten. Now, Spencer is a very well-known and outspoken member of the disability community.

 

00:20

He's the editor of BCDisability.com, a chair of Community Living BC in the Vancouver Council. He's a nationally published writer and advocate who has written or talked, rallied about countless issues that affect the disability community here and abroad. He is passionate about community living and social policy. He has been awarded the Medal of Good Citizenship by the province of BC, the City of Vancouver Excellence Award, as well as being named

 

00:50

the year, not to mention he's very active online on Twitter where we often connect. So thanks for joining us today Spencer, really nice to have you here. Yeah thanks Evan, I really appreciate the opportunity. And I have to add that it's you know in the days of post-COVID it's nice to have someone in the studio for the first time utilizing the equipment that we have here. Absolutely. So right off the top just tell us a little bit about yourself, like why are you such an advocate in the disability community?

 

01:17

Well, I'm from Vancouver and I also spent some time in Lannley growing up. I first became interested in advocacy as a kid. I have a cousin with cerebral palsy who is a few years older than me. And so I saw growing up the barriers they faced. And that led me to want to work within the disability field when I got older. And so I've done that with organizations like Easter Seals and Community Living BC.

 

01:48

As I grew up, I also began to notice more of the interconnections between issues. So, that disability justice isn't just about disability, but it also involves issues like housing and poverty reduction. Housing also involves issues like mental health. And so I became very interested in the way so many things in our society and so many of the outcomes we want to see are linked.

 

02:17

And so that led to a sort of general issue in community affairs. And at the moment, as you mentioned, I run bcdisability.com. I also run umebc.ca. I love writing on a range of different policy issues out there. And yeah, I just have a passion for inclusive communities, and I hope that's reflected in my work.

 

02:43

your own education has gone into that route as well? Oh absolutely, so I studied, well in university I studied political science. I was particularly interested in how to use you know advocacy within political channels to to achieve the outcomes we want to see and that's become a big focus of my work and I think I think ultimately you know a lot of the things that advocates are pushing for.

 

03:12

are ultimately achieved through political ends. We want our policy makers and our lawmakers to enact a certain bill that will bring into effect the candidate disability benefit or more support for youth with Down syndrome. And so my studies of political science are really linked to what I do now. I also studied sort of general studies in issues of equity.

 

03:40

and how to create inclusive communities. And so I'm really pleased that I was able to actually study in an area that I not only had a great interest in, but I've been able to work in as well. Because so many people, they do their studies in university, and they go off, and they happen to get a good job, but it's not related at all to what they studied. And so thankfully, I've been able to incorporate my education with my work. That's good. I mean, that's reaching the goal. Now just sort of jumping right into.

 

04:09

policy and things. I mean, there's a lot of things going on in Vancouver right now. There's a lot of housing issues. There's...

 

04:17

substance abuse issues, how are we doing in terms of, in those fields in your mind, in terms of even accessibility? Well, on accessibility, I think we're thinking more about accessibility lately, which is a good thing. We had our first ever, ever provincial accessibility legislation brought in just not too long ago.

 

04:47

been working on its accessibility strategy and is about to go through phase two of the consultations for that. Yeah, we're involved in that as well. Yeah, absolutely. And I know that that process has been, there's been great involvement in consultation with the disability community in that. So that's good. We're definitely thinking about accessibility. And I think it's gone beyond just, you know, physical spaces.

 

05:15

but also thinking more about technology, information, education, and attitudes. And I actually spoke recently with a Japanese accessibility scholar, Maiko Sugawara, and she was so impressed when she came here with just how, I guess, the attitudes here and the support, the general support for people with disabilities. But that said, that's a good of it.

 

05:45

The problem is that people with disabilities, whether they be physical, developmental, or both, are still facing a lot of barriers. And I know actually of cases with some well-known disability organizations, not the DDA, but where they actually themselves had issues with accessibility in their buildings. And so you can see even organizations that do great work for people with disabilities have accessibility issues.

 

06:15

When people think about accessibility these days, it's still not automatic. It's still not embedded in just our thought process. It's kind of more of an afterthought, something we have to will ourselves to think about. And we're doing that and that's a start, but I think we need to take that to another level, or else we're just gonna keep overlooking things. Well, yeah, absolutely. And it's the one sort of concept we're trying to push and other organizations, associations are trying to push

 

06:46

developers is this idea of universal code rather than getting something to a building code which can make something somewhat accessible. It might have a ramp or something like that, but if let's say you go up to the 13th floor or whatever and there's a fire, there's nothing in that code that shows how to get someone in a wheelchair necessarily out of that building. So it's still somewhat, so when we build something, the code...

 

07:13

it doesn't mean it's accessible to everybody. We really need to include the disability community to understand so that the developers, the builders, policymakers understand that.

 

07:27

things have to be done with their specific input. Yeah, and you know, when we make things accessible, it's not just helping people with disabilities, it's helping mothers who may be pregnant or may have to have a stroller they're pushing around, it's helping seniors. Really everyone benefits, there's no one who is worse off because of greater accessibility. And so, yeah, there still needs to be greater progress in the practical side of things.

 

07:56

and uh... you know i think things are in the right direction but there's still many steps to be taken and you know it doesn't even have to cost that much to make something more accessible you know putting in putting in a uh... door handle that there's a lever rather than and on makes that absolutely people to access

 

08:15

So you recently wrote about how we're falling short of adequate support for children of Down's Syndrome. How can individuals and organizations like DDA push for better support and resources for British Columbians with developmental disabilities like Down's Syndrome? Well, I think it's, you know, there's a phrase, squeaky wheel gets the grease, and I think that's often very true when it comes to advocacy. It's crucial to apply constant pressure on the people who make

 

08:45

decisions over who gets what resources. So it's important that we are always raising our voices, whether that's through social media, through talking to friends and family, through organizing campaigns, through donating to an advocacy group that we think does good work. There needs to be constant ongoing pressure and it's so important.

 

09:12

that this is consistent and that it doesn't stop because if you can put all the pressure on government but then if you let up they realize that they just have to hold out and kind of weather the storm for a bit and then you know the thing the thing the case that I want to look at is a good example is you look at the decision the government had regarding the the hubs for children.

 

09:39

uh... you know with uh... you know complex needs uh... they were going to move to this hub model but then the like mostly the the autism community and i don't know how to get there's so much pushback and they organized so well and they just they kept their voices up they were doing rallies and having a fence they were in the media bringing letters to editors they were making appointments with their mla and they just they did not let up

 

10:07

and eventually the government decided to not go forward with this plan or to put a pause on it. And that's an example of effective advocacy. It's intense, it's consistent, and it's working across multiple channels. And ultimately as well, a key part of that is working together and cooperating with like-minded advocates. You know, we can do so much more together than we can when we're fractured. And I think

 

10:38

That's a crucial element as well. So I just, yeah, saying to anyone out there who wants to advocate more for people with developmental disabilities, you know, raise awareness, educate people, get involved and don't give up because change, it may not happen overnight, but the more you persist, the better the chance that, you know, you get what you're looking for. Yeah.

 

11:00

I think, you're right, I mean, the way the government sort of backed down on that plan a little bit, I think they're moving forward on some of it, but I think it might have, it came right down when David Eby took over as well, so I think that might have helped their cause a little bit. Yeah, it was also, the timing was a bit fortuitous, I guess, because David Eby came into power and he had the chance to frame this as, you know, a fresh start.

 

11:28

uh... and it's easier to to to change a policy if you're coming in new than if you were there when it was brought in and have to admit there was in a good idea so uh... but still i think the advocacy was an important part of uh... you know getting the government to uh... to make those uh... to put put put a hold on it for now now from your perspective how does bc stock up compared to other provinces in terms of disabilities from a financial perspective uh...

 

11:57

It's important to note at the outset that pretty much all the provinces are doing terrible. Northwest Territories is the only province or territory that pays over $2,000 a month in provincial disability support. I believe Yukon is next with around $1,700 and it just keeps going down from there. I believe overall BC has about like the fourth highest provincial disability rate.

 

12:27

which sounds good but it's still far below the poverty line and as a percentage of income people with disabilities in bc only make about seventy percent of what people without disabilities in bc makes which is below the national average so i don't think we're doing that good uh... we also need a lot more support for uh... adults with complex uh... needs to live independently in their communities

 

12:55

We have the CSEL program, which could be such a powerful program and could do this, but it's been left to run dry. We don't support youth with Down syndrome like we should. And you know what frustrates me is that so much of the decision to keep certain policies in place is just simply based on what other provinces do.

 

13:19

So, for example, when I talked with the previous minister of social development and poverty reduction regarding the issue of clawing back someone's support because of what their spouse makes, it was basically intimated to me that, well, all the other provinces have the same policy too, therefore it's okay and we're going to keep doing it. The thing is, often all other provinces have poor policies as well.

 

13:47

and we really need to step up, BC needs to be bolder and take the lead on a lot of these disability issues. If you look recently, BC decided to make prescription contraception free. I believe it was the first province in Canada to do so. And about a week after, Manitoba then announced they're going to follow up with legislation to do the same. And so it sets up a domino effect when one province steps up and takes the lead.

 

14:16

So BC right now isn't doing that. It needs to do that because so many people here with disabilities are falling behind. And it's not just because they need money. I mean, the cost of living here is astronomical. Cost of living is crazy. Just like Vancouver, for example, it can cost over $3,000 for a two-bedroom apartment. Our housing market in Vancouver, the prices were already very high. And yet they've gone up.

 

14:46

twice the national average over the last year or so. What I really want to see as well, I was focusing on provincial disability rates, but another important element when it comes to making housing affordable and accessible for people with disabilities is more federal government support. Federal government used to, prior to the 1990s, used to do far more to build social housing and low-cost housing in Canada.

 

15:14

and then the 1990s came and that really dropped off and as a result we have a major housing shortage here in BC. The housing shortage is even greater for people with disabilities because a lot of the tiny amount of what is available isn't accessible. So that needs to change and I really think, you know, I could, someone could frame it as saying well BC does better than other provinces but...

 

15:43

I think we need to look at it is BC and other provinces, the other provinces don't do it well at all. And so there's so much to advocate for here in BC and that's why the advocacy community is very active here.

 

15:59

And I think a lot of the general public don't quite understand. Like, it's not just, we're not just talking about a cost of living for the disability community because there are so many more expenses to being disabled. You might need, you know, accessible technology. I was talking to one of the VPs at the Rick Hansen Foundation and his wheelchair is $38,000. Yep. That's a car. Exactly. You know? And not to mention if he's going to get a car, it's got to be something that's like lift equipped.

 

16:29

be able to get into and draw it. Yeah, I know someone who, they have a specialized chair, they have cerebral palsy. Their chair basically broke down and they need $10,000 to repair it. That's not something that you're facing if you don't have a disability. There's all sorts of expenses like that. So you face greater expenses, lower income, trying to do this while living in, you know.

 

16:56

some of the most expensive cities in the world and it's a tough road. Yeah, that's pretty crazy. But now we're talking, we can switch that to Bill C-22, which I think is in its third reading in the Senate or something. Yeah, it's in the Senate. That might be a good thing. I haven't really gotten down to many of the details in terms of

 

17:22

you know what that benefit is going to look like. I don't know what you've heard. So yeah, Bill C-22 is enabling legislation so it basically will set out a framework from which they can fill in the details. So there's limited information out there in terms of what we know about what it will look like. There's some important elements that I think absolutely must be part of it though. It must be...

 

17:48

something that people can receive whether they're on provincial or federal disability assistance. It shouldn't matter which one they're on. It should be something that's, it should be a meaningful amount of money, not a piddly like $50 extra a month, not to say that couldn't help, but it should be, I think, at least a few hundred. I mean, during the pandemic, I think...

 

18:15

the three hundred dollars extra that some people with disabilities received each month it did make a difference and three hundred dollars back then is about three fifty to four hundred now so i hope it's at least that much uh... so it needs to at least be a meaningful amount of money uh... and it needs to also not be uh... administratively burdensome benefits to access uh... because you know

 

18:40

Navigating government systems and all the paperwork and what you need to do to get this benefit or that can be a hassle. So those are three elements I really think are needed when they start to flesh out the details. And absolutely, I cannot stress enough that provinces should not claw any of this back from provincial disability assistance. We see that far too often. Someone's found a way to get a bit more money.

 

19:06

and the province will just knock it off whatever else they're already getting. And it just sets people who are already struggling even further back. Yeah, absolutely. That's, it's all come comes down to the support. And when people have those supports in place, they can live and they can contribute. So that's where it really, what it comes down to. Yeah. Um, Maid, I don't know if you want to talk about this. Yeah. This is a very, very touchy subject. I, yeah, I'll talk about Maid for sure. You know, I've actually read in a lot about Maid and interviewed, uh,

 

19:35

several people who have pursued Maid, and you know, Maid does have a place in... I think so too. It does have a place for sure in very specific circumstances. There are cases where people simply have, they suffer tremendously and they have no option left to improve their life. That is a case where you look at, you know, where you look at might consider Maid and you might say that that's acceptable if someone pursues that.

 

20:04

The thing is though, the problem is that we are often enabling people to kill themselves and doing more to help people kill themselves than we are to help them get the support they need to live happy, healthy lives. So you know, we need bolder, faster action to address poverty. We need greater programs which help.

 

20:31

People with complex disabilities live in their communities. We need more affordable housing. And we need to be able to look at ourselves and say, have we done everything we can to help this person live a good life? Because if we haven't, then too many people out there are going to pursue maid when they're really dying of poverty and not because they have some incurable.

 

21:00

uh... intractable pain or illness suffering from so i've talked to people who like uh... madeline and scarlet rose i've done stories about them who there's treatments out there that could help them you know live good lives but they just don't have the the resources to afford it and this is when you know becomes troublesome because you get people like them who are then

 

21:30

So that's a bit of the issue I have with it. We, I think, when we have legislation like made and when we have assisted suicide, we need to ensure that we've done all we can to help people live good lives before we make that an option for them. And so I don't think that's happening yet. And yeah, it is a contentious issue for sure. But.

 

21:58

I know a lot of people will have different opinions on that, but I really think that it comes down to doing more to help people live good lives. Absolutely. What I'm seeing is, you know, I sort of dig into the issue of medical assistance and dying, is some of the optics, because I'll read a story from the BBC or something that's overseas, and the headlines are literally, Canada is killing poor people. Yeah. It's almost...

 

22:25

It's almost like they're saying that Canada has gotten eugenics back in place. Yeah, and you know, there's lots of... Canada's getting a bit of a reputation from that, and this idea that we are... You know, Justin Trudeau kills disabled people. You know, that's obviously... they exaggerate for the headlines. There's a lot more to the story. But you know, I have talked with many disabled people who do see it as eugenics.

 

22:53

And because, you know, if the government hasn't helped them get the treatment they need or help them, you know, find affordable housing, but they are helping them kill themselves, well, I mean, it's totally understandable how someone would not feel good about the government in that situation. So it's difficult because you have to balance the fact that May does have a place in certain cases with the fact that...

 

23:22

In other cases, it can be a dangerous thing because people out there could still live good lives just if they had the support they need and they don't at the moment. So, yeah, and Canada's reputation I think has taken a hit as a result. Now, what do you think about, I mean, we're talking a lot about accessibility and finances and how like...

 

23:45

maybe throwing money at problems helps them go away. I think it does to a degree, but we're still at the same time dealing with other prevailing attitudes when it comes to disabilities or developmental disabilities. How do we foster that positivity or that change within the community at large? Well, I think education is such a big thing, for one. I've been in the CLBC Community Council that...

 

24:14

you know, I'm involved with. We hold and have held community events where we've invited policy makers, local MLAs and counselors and MPs, and, you know, several of them have come and they haven't had any idea that the community living movement exists. They haven't had any idea about the issues affecting people with developmental disabilities. They never really had any interaction before with people with developmental disabilities. I think the biggest key to changing attitudes is...

 

24:43

educating people and also having just coming together as a community, having events, you know, celebrate community inclusion and where people with disabilities and people without disabilities are interacting. And then you see, you know, this person may have Down syndrome but they're still funny and they're great to be around, they're a kind person, they have wants and needs and goals and wishes, they have strengths and weaknesses. When you don't have that type of direct interaction, I think

 

25:13

people are more likely just to see people based on their disability and just to think oh that's a disabled person, that's not like Kevin and Kevin who loves watching you know uh Marvel movies and stuff. So I think education is key, just community involvement and inclusion is key as part of that too. Because it's true you know money can do a lot but it can only do so much and I think we need to um.

 

25:41

really do more to get people together in the same room and to bring people together. And that's something that changed my life too when I was younger, you know, just having that interaction with my cousin. You know, I saw him just as my cousin first and not, you know, the disabled guy, the guy in the wheelchair who everyone else saw. And so I think that is something I'd really emphasize.

 

26:06

Yeah, and to your point, I haven't been working for DDA forever, and I don't have a lived experience when it comes to disability, so after being here for a few years, it is that attitude of they're not the disability, they're people before that. I've taken 100 clients to a Whitecaps game, and they're having an amazing time. Exactly.

 

26:30

you know if we win when when the elections are here we get them on voting they understand the issues they know what bothers them they know what sir what needs to change yeah and you know there's so many ways people can be similar in ways they can be different disabilities just one way you know different disabilities is just one thing uh... you know this person may have a disability and i might not have a disability but look we're both interested in the same movies the same sports we have a similar sense of humor it far outweighs the fact that you know

 

26:59

one person might have a disability and the other doesn't and i think we read we really need to get past which was still acknowledging you know that uh... disability does change someone's experience in society we really need to try to do our best to to move beyond that and uh... just to see people as humans absolutely and it doesn't you know i think disability doesn't have to limit exactly like

 

27:28

You seem to have a totally switching gears. You got a keen interest in World War II, I guess. You wrote a piece about Vimy Ridge. Yeah. Why did you write that piece? Well, you know, I've always had a general interest in war, particularly the down in the trenches combat aspect of it. And it's not because I'm some sort of lover of violence. It's actually because I'm very interested in the ways that people can persevere.

 

27:56

and work together to overcome the most extreme experiences and the most extreme circumstances that you could possibly find yourself in. So with a situation like Vimy Ridge, you had people from different areas of Canada, never met each other before, forced into the most pressing, challenging situation you could really find yourself in. And they found a way to persevere.

 

28:25

and to succeed in the face of great adversity. And I look at that as an example of, you know, around the time when I wrote that piece on Vimy Ridge, Canada was going through a period where there was a lot of division and a lot of talk about how polarized we were becoming. And yet I look at an example of like Vimy Ridge and it shows that when we come together and work together, you know.

 

28:49

our ability to thrive off one another and to succeed as a team far outweighs any differences we have. And so applying that to advocacy, you know, I really always believe that we are more powerful together. And that's why, you know, I try to collaborate with everyone I can. I try to be supportive of everyone out there. And I just really encourage people, you know, work together.

 

29:13

don't be divisive, we're in this together and are stronger together. And I just look at Vimy Ridge as an example of that and something we can learn a lesson from even all these years later. I think that's well said. What more do you need to say? Anything else to add today about disabilities in general and advocacy? I just want to really stress the need if you're going to be an advocate.

 

29:41

and you're feeling intimidated at the idea of going to talk to an MLA or writing a letter to someone or being part of a campaign, it can just start with speaking up to your family and friends. It can start with speaking out to your colleagues or telling them about an issue and that people with developmental disabilities are still excluded in a lot of ways in BC. It doesn't have to be some grand thing.

 

30:11

And just, you know, persist because when we keep the pressure on, that's when we make the biggest difference. And just one more thing I want to say, and I know DDA is involved with this too, to the listeners in Vancouver, the second phase of the city's accessibility consultations will be held in May. I think it's May 27th or so. But if that's something you're interested in.

 

30:39

in participating in it's another way you can be an advocate so uh... if you look online there will be more information about that soon and uh... encourage you to participate and you can also just be a keyboard warrior how do people find exactly yeah be a keyboard warrior go to if you want to check uh... my if you want to see examples of what i've written you can go to spencer v dot c a uh... you can also go to spencer

 

31:04

And you can also, if you don't have a Twitter or an Instagram or Facebook, think of starting one and think of speaking out about the issues you care about. Because your opinion does matter and it can influence what happens. So speak out and make yourself known. Your opinion counts. And I think just one final point, which I've made this point on many podcasts, is that we're not really just speaking necessarily for the disability community.

 

31:32

we're speaking for everyone because at some point in our lives, whether cognitive or physical, we're going to need assistance, we're going to need support, we might need that funding or policy in place. Exactly. This is for everybody. Exactly, it's for everyone. Inclusion benefits everyone, accessibility benefits everyone. No one loses because of this. That's why I think it's so important, even if you don't have a disability, to be an ally and to support greater community inclusion.

 

32:03

You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Spencer Van Vlaaten, as you can see, is a great and outspoken advocate for the disability community. Spencer, thanks for joining us today. Thanks so much. I really appreciate it, Evan.

 

Roshni Kashyap was born to make food. The young woman with Down syndrome started a chutney business and is poised to launch a cookbook. However, she has many other talents and her whole life to explore them. Including publishing a book of poetry. Available on Amazon is Don't Forget You're Beautiful.

 

TRANSCRIPT

 

Roshni is a Self-Advocate with a Mission to Feed!

 

00:04

Hello and welcome to another edition of DDA's podcast, Encouraging Abilities. I am your host, DDA Communications Manager, Evan Kelly. Now lately we've been talking a lot about inclusion and accessibility with a variety of interviewees, but today we're chatting with a very interesting young lady, her name is Roshni Kashyap, to be clear, and I got this from your website. She likes to be called Rosh for short. So that's so much easier for me. Now Rosh is a self advocate with Down syndrome.

 

00:33

who is building a chutney empire. Food is in her blood. She's been cooking with her mom for as long as she can remember and completed the food service careers program at Vancouver Community College. Since then has launched three different chutneys and even wrote a book on her. Now on her website, she says, and I really like this, they say I have Down syndrome, but that doesn't get me down. That's such a wonderful outlook on life. Welcome to the podcast, Rosh. Thank you.

 

01:03

So tell us a little bit about how you started being involved with cooking. I had a passion of cooking since I was a little girl. And ever since then, I've seen my grandmother and my mom, like, be in cooking. And that's how I actually loved cooking. Now, do you come up with your own recipes? Are they somewhat sort of passed down from family members?

 

01:28

Actually when it comes to um, my chutney business, I actually had some help come up with my recipes Can you tell me a little what how do you settle on the final ingredients of these recipes? I'm every ingredient actually um, so I do get it from a wholesaler and sometimes I have at home Mm-hmm. Yeah, like I get things in bulk sometimes even the crime berries

 

01:56

and cranberries. And so how many different chutneys do you sell right now? At the moment, I'm thinking of like a backseat of that because I'm going to start on a different vegetable also in the food category. Oh, you're gonna do something different other than chutneys? Yes, that's right. What do you gonna produce? Actually, I'm going to be producing a recipe book.

 

02:25

Oh, wow. A recipe book. So how many recipes are you going to include in that? At the moment, it's 30. I am going to add more. Well, 30. That's a lot of recipes. I don't think I could come up with 30 recipes or ideas to cook with. So are you as what you're saying is people can't get your chutneys now? Is that the idea? I think it's seasonal at the moment. And it's been a while since I made the chutneys. Okay.

 

02:53

Is there any still available or should we just wait for the recipe book?

 

02:58

I'm you can do a bit of both as and you can contact rosh's chutneys Let me know if you're interested in some and then I can make according To whoever wants. Oh, I see what you mean. Okay, so and just to be clear that's rosh's chutneys calm rosh's chutneys calm and all the contact information is there so that sounds really really good

 

03:25

And so this cookbook, what kind of recipes are you sort of focusing on? Is this, you are Indian, so are the recipes in this new recipe book going to focus on Indian cuisine, or are you going to branch out a little bit? It is going to be like international cooking, actually. Oh, wow. Can you give us an idea of one or two of the recipes? One of them is a sweet dish.

 

03:55

Indians read this and one is translated to says sour potatoes. Sour potatoes. That sounds good. It's I know a mashed potato dish that involves a lot of sour cream. Is it that kind of thing? No, it's a Indian style type of cooking. Wow, that sounds good. We will definitely get a copy of that book here at DDA. When when are you expecting that to be finished?

 

04:23

Actually, that's going to take a little while for it to get up and running. Once it starts up and running, then I will let you know for sure. Absolutely. Then you could like sell it on Amazon or something like that where people can print it off and you have the service they can bind it for you and everything like that. Or are you actually trying to publish this and get it into stores or something? As of now, I have it as a PDF form. Soon I am going to have a physical book.

 

04:52

Hopefully that'll be really great So you've mentioned as well on your website that your sister helps you out a lot is so she's still helping She's still helping you a lot with your chutneys and your cookbook She is helping me. Yes, she helps me a lot That's excellent. What about your parents? I know they've been very very supportive of your cooking too, right? Yes, that is true They have been very supportive of my interests and in the food world

 

05:20

Well, it sounds like you're really doing some great stuff here. Now you also mentioned on your website that you try using local ingredients as much as possible. Is that really important for you? That is very important in multiple ways. Like, um, that also helps benefits when it comes to, um, the spiciness cycle involved in the food. And it's really, really good stuff that I'm providing.

 

05:48

and you really want to focus on healthy ingredients too, yeah? Correct. That's excellent. It also mentions you were, I don't know, sort of change the subject a little bit here, it mentions that you're in UBC. Are you still at UBC or are you finished there? Actually I graduated from UBC. Amazing. What were you taking? I graduated under Film and Theatre.

 

06:18

film and theater. Yeah. So you're doing a lot of different things here Raj. You're cooking. So are you doing something with the film and theater as well in your life? I do have a YouTube channel. So I put whatever I feel like on it.

 

06:38

Yeah, I noticed that I looked at it a little bit. So you've got some food stuff and a bunch of other different things. So are you hoping to get into like film direction or acting or something like that? I don't know yet. I haven't figured out my career path yet. That's a hard one to figure out sometimes. Yeah.

 

07:03

Now, I know you've got this recipe book coming, but you've written another book, haven't you? My very first book was called Don't Forget Your Beautiful. That's actually on Amazon at the moment. And that's called Don't Forget Your Beautiful? Yes, that's my poetry book. Oh, wow. So what do you... tell me a little bit about your poetry.

 

07:31

I used to write poetry until I got help to, I've been writing, written a lot of poetry. And I had it all with me. I don't know, one day a friend of mine just took my poetry and helped me turn it into a book with paintings and everything. Now, did you do the paintings and the illustrations yourself? The illustrations, yes, but the paintings is now a friend of mine.

 

07:58

What do you know when it comes to poetry? What do you like to write about? Sometimes about love, sometimes it was something funny, something that makes you feel happy. And sometimes it may just question yourself as a mixture of everything. A mixture of everything. Speaking of mixtures, let's go back to chutneys because I'm a big fan. Can you take me through the process of making one of your chutneys?

 

08:28

The thing is, a true chef never shares her secrets. Oh, yes, I guess that is quite true. So, OK, I won't I won't ask you further to divulge your your your chutney secrets. I was not about ingredients, but is there a sort of a process you just in terms of the cooking, is there cooking times that are important to anything like that?

 

08:56

like um cooking is my passion and i do it i cook out of love and when i can do the labor of doing it well it's worth making cranberry chutney because chutney is in my background cranberries on bc that yeah i thought what the heck let's make something yum yeah the words certainly are known for our cranberries our cranberries out here aren't we yes um

 

09:23

I've also noticed on your Instagram page that you have a doggy. I'm a dog person. We love our dogs over here at BDA. What kind of dog is she? He is a Labradoodle. Labradoodle. What's his name? Buddy. Buddy. Oh, that's great. So when back to UBC, how long did you go there for? I was there for five years. Five years. And so have you got a degree in film studies and theater?

 

09:53

I did get a certificate of completion. Okay. That's amazing. Did you have a lot of fun there? Oh, it was amazing. I love being on UPC campus. It was very worth it. Oh, wow. It sounds like you have an amazing life going here. And then it doesn't sound like Down Syndrome has been much of a hindrance for you. I don't let that get me down. As in, I don't want people to see me as that.

 

10:22

If you see me as a person that's good enough. And so why is being a self advocate important to you? People need to hear the voice behind the girl and the girl behind the mask of having Down syndrome. And what would you what what sort of message would you like to send to other self advocates?

 

10:48

That's a good question actually. My message would be if you have some sort of disability, don't let that get to yourself and make sure that you are self-aware of what you're doing. If you're passionate about it, just go for it. And if you have a voice, run with it. That's excellent. Very, very well said. So where do you see yourself in the next five years?

 

11:18

Oh, that's a good question. I don't know where I think myself at the moment. I have no clue. Maybe I'm hoping somewhere in the film line or in the music line, one of the two. Okay, so what I'm a musician myself. So what what is it about music that you do? I actually write my own rap songs. Oh, wow. Really? Okay. Yes. That's amazing.

 

11:47

I have recorded a few of my rap songs but not too many yet. Okay, are those on your YouTube channel? No, not at the moment. Yeah, that's uh, making music is an interesting process. I've been doing it for many, many years. Wow. So anybody that can get up there and rap, I doff my hat to you. That's amazing. What do you rap about?

 

12:11

Um, um, I've got so many rap songs that one is called super solo. One is one is about, um, I don't want to name drop brand away chip, but I'm just gonna call it chip song. Chip chip song. Now you say you want to name drop as in who when I say that it's actually called the Pringle rap. Oh, that chip song like as in as in potato chips. Yes.

 

12:39

Here's a fun fact, did you know Pringles are made with mashed potatoes? I did not know that actually. Now you know. That's how they get them all the same shape. I had no idea about that. Interesting cooking tips. Anything else to add, Rosh? It sounds like you're a really, really busy person just having fun with life. Fun fact, there's another part of my studying that I have been doing lately.

 

13:06

And it's an online program that I am doing. An online program? Yes. Okay. What would that be? Vancouver Island University. And it's an entrepreneurship program, online program I'm doing. An entrepreneurship program. Oh, you mean like, oh, you mean for studies?

 

13:31

For studies, I'm just going to be close to my cookbook. Oh, that's what you do in your cookbook too. Oh, that sounds great. Well, I got to be honest, we're looking forward to that cookbook. We will definitely order a few and we'll like we we here at DDA. We run a bunch of group homes for for for adults and community living. And we would be happy to distribute that book to all of our group homes. That would be a good thing to do and get your recipes out there. Yeah, that's true.

 

14:01

like distribute maybe my poetry book. We can do I will help you do that if that's available online and if you you know you and I are in contact you can send me the links I'd be happy to publish that on our social media channels to get your name out there that would be easy. Yes you can also find me on my social media platforms. Yes are your is your social media connected to your Rosh Chutney's website?

 

14:30

one of them is but not all of them are okay we'll have to all have to uh... i know i know i've seen your youtube channel but i've got a i think i've got a are you on facebook and twitter as well uh... it's not on twitter but it is on facebook okay we will we will find you there and and is is is your your first book available on the link there my very first book will be actually on

 

14:54

On Amazon, except I don't forget your beautiful, my poetry book will be on Amazon. If you just tap up my name. I will do that. And I'm going to, I'm going to put that on social media right now. Right. I'll write as soon as we're done here. Awesome. Well, Roche, it's been really great having you on the show. I think we've covered a lot of bases here. Our guest today has been Rochne Kashyap, a self-described foodie who has Down syndrome.

 

15:21

but that doesn't seem to stop her at all. She started her own chutney business after completing courses at Vancouver Community College and at UBC. You can still possibly order some chutneys on her website and that's www. She is about to publish her first cookbook, so we're anticipating that. That's gonna be awesome. So, Rosh, thanks again for joining us.

 

15:47

Thank you very much. Now you have been listening to DDA's Encouraging Abilities podcast. I'm Evan Kelly. See you next time. All right.

 

Not even two years old, Kello Inclusive Modeling Agency, based in Edmonton already has some massive brands seeking them out. But what's more important is the clients they represent.  We chat with founder Katie MacMillan.

 

TRANSCRIPT

 

Kello Inclusive: Edmonton-based Modeling Agency is Starting to Get Noticed

 

00:06

It's time again for Developmental Disabilities Association's Encouraging Abilities podcast. I am your host, DDA Communications Manager, Evan Kelly. Today we're talking about inclusion. We've been talking a lot about accessibility. Of course, that's important too. But inclusion is one of the driving forces of DDA and its community. Joining us from Edmonton is the founder of Kelo Inclusive. It's a modeling agency based in Edmonton.

 

00:29

You know what makes this agency different is that they're fundamentally about inclusion and striving for representation in the modeling world The clients they represent have a disability of one form or another they might be missing a limb or they may have a cognitive Disability it sort of runs the gamut so right from their website. I'll take this little quote Representation matters because when a person sees themselves represented fully and fairly in the world they live in they know they matter being inclusive means

 

00:57

taking the time to listen, learn, and adapt. Kelo exists to make that change and to be that link in the industry that is looking for to make the leap toward true authentic inclusion. So Katie McMillan is the founder of this great business. She brings her experience and drive to include through her three children, one of whom has cerebral palsy. Katie, it's great to have you on the show today. Oh, thank you so much for having me. This is awesome.

 

01:26

Now, firstly, thank you for obviously creating such a unique business in a professional, in a profession, I should say, that is normally dominated by what might call the industry standard of beauty. It's just really nice to have that.

 

01:42

Yeah, and if we, I mean, we could probably make a whole other episode on talking about beauty standards and all the ways they need to maybe expand. But we will definitely focus on disability today. Yeah, I mean, it's an industry that seems, at least in Canada, to be starting to have the conversation of inclusion and how important representing

 

02:05

body diversity, size diversity, neuro diversity, sexual diversity is, but when it comes to disability I think the conversation sometimes stops prematurely because I think it's so new in

 

02:20

It's not mainstream yet. And so I think the conversation stops sometimes because if I'm being blunt, I mean, it's scary for people. If you haven't had the lived experience, if you haven't had a close connection with someone who lives with a disability, it can be a bit scary and challenging and worrisome for people to just jump right into it. And honestly, that's what our agency is here to help with, is to make working with disabled talent less.

 

02:48

less scary, less of a question when you have the support in place to do that, then it's something that people are going to consider. Yeah, and I find, you know, after working with DDAs, that people, they don't know how to approach or they don't know how to necessarily deal with people, so they end up infant, people with disabilities, I mean, so they end up infantilizing them. So I look at a business that you're putting together here and it's just like, wow, these

 

03:16

these people belong on the front cover of a magazine. Right, and I know, and it's so funny, like, so I say this all the time, and again, okay, just to put a little context, as you mentioned, I have three children. My middle daughter is 12 years old. She has cerebral palsy. My oldest is 14, my youngest is four, so wide range. But I've been the parent of a child with a disability for 12 years. And I would say, if I'm being really honest about it, my...

 

03:42

For the first 10 years of Kelty's life, I would say that I didn't, I did a lot of things for her, but one thing I did not do intentionally was to have conversations with people who live with disabilities, people who are disabled. And about two, two and a half years ago, it was a giant shift for me where I started to listen to disabled voices. And I learned so much.

 

04:08

so much from the disabled community and it seems like you know something that would be so straightforward like if you want to learn about disability like go to the source like duh but I learned but you learn about disability through the context of ot's and pts and doctors and you know specialists and all of these people who are so knowledgeable but they are also not disabled um and one of the things I learned really I mean I could probably fill again a lot of time talking about all the things that I learned but one thing just circling back to what you said is the

 

04:36

One of the things, one message I heard repeatedly is disability gets associated with a very small number of things. It gets associated with tragedy, it gets associated with inspiration, and it gets associated with, as you mentioned, being infantilized or people are condescending or they're patronizing. And it really doesn't go beyond that very often. And I'm trying to reconcile this with my 12-year-old who's...

 

05:03

sassy and spunky and trendy and cool and kind and all of these things. And I'm like, this doesn't jive, right? And so that, I mean, that was my discussions with the disabled community were really the buddings of this agency and how much it was needed. Yeah. And I think, you know, when you when you present the disability community like you are, it's what I find even not necessarily with cognitive people who have got cognitive disabilities.

 

05:33

I talked to one woman recently who had vision problems or mobility problems, she was in a wheelchair, and it's this notion that people with disabilities can't accomplish things.

 

05:48

you know, someone would say to her like, oh wow, I'm so happy you got outside. It's like, yeah, of course I got outside. Did you want to talk about my law degree as well? Like, it's this notion that they can't accomplish these things. And when I see your website, I think that just flips that on the head for me. Well, I mean, media shapes perceptions, right? And when we tell a single sided story in media, then we get a single sided public perception. And when disability is always associated with, you know,

 

06:17

as being an absolutely tragic fate, then that's when we have this one-sided perception that, oh my, you have a mobility aid, you need support, you have access needs, like this is so sad.

 

06:30

and how could this possibly, you know, how could you exist in a world? And I mean, it's just not the case. I mean, I can't say that as a person or a parent in my case, but when you are a person that lives with mobility issues or have a good reason to consider access needs, I mean, life is frustrating. But a good big part of that reason is because you never have to consider your access needs until...

 

06:49

you have a person with a disability in your life, or you are become a disabled or are a disabled person, then you start to have to consider these access needs. And I think the more people that are exposed to disability in media, now we all have a lens of, we're gonna look at our world through a slightly different lens of saying, wait a second, I see wheelchair users in magazines all the time, and maybe I can consider access needs from a whole different perspective, but if they're not even part of the picture, literally, then...

 

07:18

people don't even think about it. And that's the problem and leads to so much complication and frustration for folks with disabilities. Yeah, absolutely. And that goes into whole other topics of like universal design and looking at, just looking at things through a different lens. I mean, designs, I've talked to a gentleman at the Rick Hansen Foundation a little while ago for another podcast and his perspective was that, things are designed for males between the age of 15 and 50.

 

07:48

But that's it. So we've got to really shift that lens. You know, there's a disabled content creator that put it so clearly to me. He said, you know, non-disabled people have never considered their access needs because they're always met. Like, no non-disabled person is calling ahead to check if there's a staircase available for them when they arrive because there's always a staircase, right? Like, whereas, you know, so when your access needs are met by default, you don't even have to consider them.

 

08:13

And you're right, that is a bigger conversation. But I mean, that's why representation matters. And I know with Kelsey, like, you know, when she's a 12 year old girl, that is the age that you become aware of the world's opinion. And she's had moments of like, you know, why am I in a wheelchair? Why do I have hearing aids? Why do I have to wear AFOs? Like, you know, why me? I'm so different. And in a moment of real emotion for her, you know, it doesn't matter how eloquent I am as a mom, it's the only thing that pulls her out of that moment is showing her pictures

 

08:43

women who have cerebral palsy, who are successful and happy and have children and have full and rich lives and the internet is a beautiful tool for being able to do that. But I have to go searching for that, you know, I'm looking those up and I'm pinging those in my phone so that I can show them to her what I'm looking for and what we're looking for with KEL Inclusive is to just, you know, make it be part of TV shows and magazines and dialogue and all of it.

 

09:07

and it might take some time to get there to represent the full numbers. You know, if they say, you know, a quarter of Canadians, you know, live with a disability. And then if you extend friends and family that are connected to those people, I mean, a good half of the country is either associated with someone who is closely associated with someone who has a disability or has a disability themselves. It's not like we're talking about a niche market here. It's like it impacts a lot of people. But the media just seems to treat it like...

 

09:36

Like it is a niche space and it's just not. And so let's jump right into this, this whole modeling thing. Do you come from a modeling background or is this just something brand new that you started? Great question. So I'll give you the origin story. So when Kelty was about five, I saw somebody posted on Facebook a Target magazine from Australia and in the girls clothing section.

 

10:01

was just one of the models had was using a crocodile walker, that little orange if you have CP in your world, you know what a crocodile walker is. And she was just posing. They weren't calling out the fact that she was disabled, nothing. She was just with the other in the clothing section. And I remember being like, oh, that is just awesome. You never see mobility aids in fashion. And to answer your question, no, zero in modeling experience from my background. But anyway, I saw that and I sort of thought, that's so cool. And I filed it away in the back of my mind for a while. And then COVID happened.

 

10:31

And everybody, like everybody on the planet, had a little more time on my hands. And I sort of recalled that, that Target magazine. And I thought, you know what, I'm just going to, I'm just going to send Kelty's pictures to a modeling agency in Calgary, see what happens. So I did. And they got back to me and we had a intake call and they signed Kelty. And, and I remember thinking I was so, we were so excited. We were like, this is so awesome. Like.

 

10:55

I would not have gotten my other children involved in modeling, not because I don't think it's an important career or could be an important career, but it just wouldn't have been something on my radar. But I was truly doing it to see if we could get more better representation. And so Kelsey was signed with this modeling agency for about two years. And we had a handful of experience with them, most of which was new to me. You know, but we were left just with such a bad taste in our mouth. Really to summarize, it's just

 

11:23

that industry did not know what the heck to do with disability. It was just so very clear to me that that was the case. I mean, we would show up to fashion shows and despite knowing they had a wheelchair user in their runway show, there was no ramp to get up on the runway. Or the clothing choices that would be chosen by the designer just would never fly with a wheelchair, a giant poofy dress that would get caught in her wheels. Or nobody knew the right questions to ask. Or one really upsetting moment for me, especially in hindsight was...

 

11:51

Kelty being paraded down the runway at the very end of the show to different music that was like, you know, the inspirational like look at the kid in the wheelchair and the the people the organizers of the show were sort of parade there were people crying in the audience and I'm not even sure why Kelty looking over at me like what the heck mom like why are people like I'm not dying

 

12:14

So it was just as kind of going, oh my goodness, this is nobody knows what to do with my daughter. So, you know, no, I didn't have any experience modeling or in this industry. And when we first started Kelo Inclusive, my goal was we really thought we'd stay in our lane of modeling, like print modeling. And I thought to myself, you know, if I can get disability, you know, in some big marketing campaign or on a few more runways, I will have succeeded and I will feel good about that.

 

12:42

But it very quickly grew into more than just modeling. I mean, we've had casting directors for TV commercials and voice acting and, you know, the city of Edmonton and, you know, a children's hospital and a university, a major Canadian university reach out. Like everybody needs to be more inclusive. And if you have imagery attached to your organization, which almost every organization does, people or folks are interested in showing that.

 

13:08

that in a real authentic way or at least starting to have that conversation and the resounding message we keep hearing is, oh my goodness, I'm so glad that an agency like yours exists because we wouldn't, we don't know where to go to find this. So well, and that's, and that's a good point because as the communications manager here at DDA, I'm often getting emails from casting directors that are needing people with disabilities and our family, our families to fill certain roles. So

 

13:32

I'm more than happy to send you some emails if you need that. Please forward them on. We are, I mean, truly, I mean, okay, so then we start, then we get into the, because this was the other side as our agency and our role as agents has sort of expanded because, you know, we're truly not just, I mean, we provide disabled talent, no question. So if there's a casting call or something that needs a person with a disability, we want to fill that and are happy to and have lots of people that we've connected with now to be able to do that. But the other side of it too is like,

 

14:01

there's been such a systemic barrier to entry in this industry. I mean, I've heard lots from disabled adults being like, I never even considered modeling or I never even considered acting because, you know, I'm in a chair or, you know, I have, you know, I, I'm missing a limb. I spoke to a woman who we just signed recently, who is a gorgeous, like she's beautiful. She has modeling experience. And she sent us all these beautiful professional images and we couldn't see her limb difference. And she said, well, I was told to hide it. And this was, I'm talking like within the recent past, like the last few years. Um, and so,

 

14:31

It's like we are having also to fight that kind of systemic barrier to entry as far as training goes, right? So it's not just about filling the disabled roles that come up. That's step one. But what we really hope is that we could put our talent forward for literally any role. We just are also really focused on training and making sure that our roster has opportunities to engage in accessibly minded training opportunities as well. And you know, as we grow that's something that

 

14:59

conversation we've been having with folks, people with a vested interest in it because it's also important to see disability is not just something niche or a box to tick, it's also like if there's a lead role for a film.

 

15:17

literally anyone could apply for it. It doesn't matter if you're a person of colour, if you're in a wheelchair, if you're, you know what I mean? So. Yeah, absolutely. And so, suffice to say that, I mean, my question was, you know, how has the response been from the business world? I mean, it sounds like it's been amazing.

 

15:34

Oh yeah, like overwhelming I would say would be an appropriate word in the best possible way. I mean like I said, we didn't really know, we had a real sense that there was a gap that needed to be filled, but as we connect with more folks across the country and are getting our name out there, the response has been just awesome. And from people that we wouldn't really have expected, like when we get a call from a casting director, a major casting director, that is exciting to us and exactly what we hoped for.

 

16:04

us to come and present and do a you know a discussion on on true inclusion and help with the up and coming you know students in their media and marketing um you know undergrads and how we can support that like that is the new and exciting stuff that that we didn't expect to have come out of this that that really you know kind of makes our our hearts sing a little bit about the fact that this isn't just

 

16:25

You know, this isn't just ticking boxes and filling roles. This is also about having a bigger conversation about inclusion. It's not not just a one off. Yeah. Now, are you how many since you started? How many how many clients do you have on your roster at the moment? We actually just counted up. I think we've signed just shy of 100 Canadians across the country. And we have.

 

16:48

Connected, I don't think I have a good list for you, but as far as a list of clients, I mean, just, I mean, it's only, so it's interesting timing-wise, like we started this in 2022 and really built some momentum over the first six months and now we're into the tail end of our first year and that's the last two or three months has been really, we've started to just see a real shift in people from all over, clients looking to connect with us and it's like I said, it's everything from, you know, like government organizations to

 

17:16

you know, clothing brands to, you know, large international campaigns. We, you know, one of our big exciting moments was we worked with L'Oreal and Lancome on an accessible technology for their, for some cosmetics application for people with upper limb weakness. That was the lipstick.

 

17:34

Yeah, the HACTA. You saw it. So Natasha is one of our models. Oh, is that right? Wow. So, you know, just again, and when we got that, you know, when we got that call, when the agent reached out to us regarding that, you know, we were obviously very excited and hoping to...

 

17:52

you know, meet whatever need that they had, but it's really spoke to the fact that how much of a need there is the fact that, you know, we were getting a call, an international call to help fill a role for disabled talent was really, was really again, just confirmation that we're doing the right thing here. It's clearly needed. Yeah. And that was my next sort of my next question. Any big names? Yeah, the biggest are actually, yeah. Yeah, I mean, absolutely. So you know, we started with some small local businesses here in Edmonton to do some test shoots and our lead photographer is based in Vancouver.

 

18:22

and we've done some local Vancouver brands, but some of the bigger names, I mean, we've done some collaborations with Vessi, Lulu Lemon, we've done, Lon Coleman L'Oreal was a really big one. We've put our, there's a camping store in Edmonton, Track and Trail, Poppy Barley, Sweet Jolie, I mean, honestly, there's just a number of people. UBC, City of Edmonton, lots of folks have been connecting and have projects either on the go

 

18:52

have completed already and every single time. CBC is another one, we wreck the cast of 10 wheelchair users based in Edmonton and there's a reality show airing on CBC Prime Network at the end of this month, February 24th, it's called Push. And it follows the lives of 10 wheelchair users in Edmonton and we represent the cast of Push. And I think it's gonna be a really groundbreaking and exciting show for folks, cause it just shows.

 

19:19

them as human in all of their raw real lives and I think it'll do a lot of justice to the for to and for the disabled community. Well, now it with with you've got 100 people are you still looking to expand? Absolutely. I mean,

 

19:35

It's a good question. One of the values that we care a lot about, and I say we as my partner and I, Austin, Austin is my life partner and business partner, is the personal connection with the folks that we represent. I know with the small bit of experience I had with the agency we had Kelty first signed with, we felt like a number, which was unfortunate. You didn't really know who you were getting on the other side of that email. Nobody asked questions to get to know what Kelty was all about. I vowed that that is not the kind of

 

20:05

it comes to disability, there's so much nuance and uniqueness to everybody's situation. I want to have a pulse on that and for people to know that when they email me, they're getting my response and they know who I am. So is there a limit? I mean, I'm sure, or as we expanded, can hire more people that we trust to make those connections with folks on our roster. I like to say no, there really isn't a limit. As of right now, it truly is just Austin, myself, and we have a lead photographer who

 

20:34

you know, organizes a lot of the inclusive projects and consults on a lot of the inclusive projects, but right now it's just Austin and I. So we're getting busy. Austin, his...

 

20:46

He stepped away from his profession of he's an engineer by education, but did a lot of strategic management consultant and he's stopped doing that and doing KELO stuff full time. And I'm my profession is a high school teacher and I'm teaching part time in the mornings. And I don't think it'll be too, too long. And I'll be also having to step away from teaching. But and hiring some more agents and hiring some more agents and people that we, you know, that we trust with getting to know and doing right by our talent.

 

21:16

sort of the only game in the country or is there another organization that does the same kind of thing? It's interesting. We are the only one, we are the only agency in the country that is focused exclusively on disability and visible difference. There is, there are definitely agencies that have been around for a long time that have inclusive divisions of their agencies and they have things sometimes they call them things like special projects.

 

21:41

I can't say I love that name, but anyway, special projects or inclusive vision. But I had a really wide industry, a gentleman in the industry who was kind of trying to, in a loving way, poke holes in our business model and say, you know, so what's to stop a modeling agency or a talent agency that's been around for like 30 years just swooping in and doing what you guys are doing? And I just looked at him deadpan and I said, disability scares the heck out of people. I feel very comfortable in this space. And

 

22:10

I can't say I don't have more to learn, but I feel very comfortable. And for most folks, it's just not a comfortable space. So in 10 years from now, it may well be, but I think that we're feeling relatively confident at this moment of being able to become the true inclusion experts in the industry in Canada. I mean, that's how we really hope to position ourselves. And perhaps there'll be agencies that follow suit. There are some international agencies that are doing

 

22:38

What we're doing that have been around a little longer, but they have not seemed to make any headway in Canada thus far So it seems it seems like we've got a bit of a bit of a first movers advantage here and we hope to do right By it. Well, that's great now Obviously building something doesn't come up come without challenges. What are some of the challenges or frustrations you've had to face so far?

 

23:01

Well, I think for me it's capacity right now, which is a good problem to have, I guess. You know, like I said, you know, as we connect with more folks across the country, to be able to have all the time that I need to dedicate to every person is becoming a little more challenging, but something I'm not willing to give up. The other challenge, which I guess is a bigger picture and I think hopefully will change, it's just, you know, people, not everybody is on board with...

 

23:29

this idea of authentic inclusion, there's still a lot of social stigma and attitudes that need to change. So I think as much as I like to think we're headed in the right direction, there are definitely moments where I'm like, oh, we still have a long way to go. There's still a lot of advocacy work that needs to be done.

 

23:46

as well. The other the other pieces you know from a purely business standpoint like we are set up as a non-profit and we don't run around advertising that not because we're not proud of making that we just don't ever want anybody to you know, misassociate us as a charity helping these poor disabled folk, right? Like we just really want to get away from that and I know people that don't understand how non-profits work might make that that misassociation.

 

24:11

We set up as a non-profit because we know that, well, truly if Austin and I can earn a modest salary and cover what we would have normally been making as professionals in other areas, that would be good for us and we'd be happy. It's not about money for us. It's about changing social attitudes and the hard work in that way is the extra time and effort that needs to happen to do it the right way, to imply for the right kind of grants that are going to...

 

24:38

further what we're doing to have the advocacy conversations. You know, it's just a whole added layer of things that need to be done. And I just want to divide my time equally among everything and it's capacity right now, I would say would be the biggest challenge, but really hoping as we grow, we're still relatively young that we're going to build capacity as soon as possible and be able to hire on folks that.

 

24:59

that want to be on board with what we're doing. Now I just wanted to go back a little bit, talk about sort of attitudes and even personal journeys. Your Instagram account, you talk about being better, not necessarily being a better mom, but a better person and how we address and relate to people who have a disability. How has this journey been for you? Oh, that's a great question. I would say it's been a bit of a fast and furious one. Like I can tell you,

 

25:24

For example, like I think I said earlier, I think I spent the first decade of my daughter's life learning about disability through people that weren't disabled. And there's a lot of expertise to be had in those arenas, but what's missing is that lived experience. And when I started to pay attention to people who have disabilities, I just learned so much. I mean, you know.

 

25:46

the small but important things like language choices. I think I referred to myself as a special needs mom for the first 10 years of Kelsey's life and then have this awakening of like, oh, the disabled community really, generally speaking has no interest in those euphemisms like special needs and handicapable and differently abled. They're like, just say disabled. So the little things that matter.

 

26:09

The education I had regarding the importance of understanding that I am the parent of a disabled child and that is my lived experience, but I am not disabled myself. So to insert myself in the disabled narrative, like I know what I'm talking about, is not okay. Like I need to speak from my perspective and my perspective alone, but I think what can happen often to people happens to my daughter. Honestly, I probably do it to my daughter more than she likes, but I'm getting better where...

 

26:38

you become that voice. You say, I know what's best. I was sitting in a medical appointment and a doctor asked a question and I'm answering on behalf of Kelsey because that's my role. And she's looking at me going, it's not your body, mom, it's my body. And I'm like, yeah, good point. You answered the question. And that kind of thing. So that's been a big, big part of it for me. And I also think just to kind of tie it all together, it's just, it's a humility. It's a, as a,

 

27:06

as a Caucasian middle class white woman with an education, like I didn't have a real experience with the minority. I didn't really have lived experience through the lens of a minority group in our society. And then I had Kelsey come into my life and I got a real window into what that means. And does it mean I understand everything? No, but it's given me like an empathy and a humility about the experiences of so many other people in our world. And I...

 

27:33

I'm just so grateful for having had to look through that lens. And, you know, I'm just endlessly grateful. You know, I teach English and when I'm teaching what the word paradox means, I will often say it's something that makes sense but doesn't make sense. And that's just the truest sense of the word for me with disability is, you know, you'd never wish it on a person or a family. I'd never say, oh, I hope, but then at the same time.

 

27:59

I'm so grateful for having gotten to experience and be part of this. Maybe it's appropriate to just share a little story that was so powerful for me with my daughter. Oh, sure. So she asked me in all of this disability advocacy stuff, she asked me once, I would say within the last year, she said, Mom, why am I disabled? And I've told her over the years, there was brain damage that happened to you when you were born. It was a really traumatic birth.

 

28:29

I've explained it to her in the best way that she knows how. And what ensued after was she said, well, mom, when I have a baby, will my baby be disabled? And I said, oh, honey, absolutely not. It's not genetic. It's, you know, don't, no. And she started to cry. And I thought, oh my goodness, what have I said? What have I said? And I looked at her and I said, oh no, honey, your child, you're not gonna have a disabled child. And she looked at me, she's still crying her eyes out. And I stopped her and I said,

 

28:58

Ficalti, do you want your child to be disabled? And she looked at me and she nodded her head yes. And I was like, oh, of course you do. She's like, disability's awesome. I would be honored to have a disabled grandchild. And I'm finishing this conversation going, maybe if we're lucky, maybe you'd have a child with a disability. And I had this moment of, doesn't matter how much learning you do, like the deeply ingrained ableism that is in our society, it is so pervasive to the point where,

 

29:29

And this moment for me of just like, of course, she'd want to have a disabled child. She's going, I'm disabled. I'm awesome. Like, why would I? Of course. And, you know, so that was just a huge moment for me that kind of put all of this learning and my journey together going, I need to check, we all need to check our, and our, you know, implicit biases at the door and start to just open our eyes and think differently about all of this. So I'm just doing everything I can to help everybody in that journey. And absolutely. And from the perspective of a high school teacher, I mean, and, and

 

29:58

given what you've seen and what you've been through and in the education system, are society's attitudes getting better? Is inclusion working? Great question, yes. On a really high level, everybody's having conversations that we were not having a few years ago. I'll give you one quick example of the high school, from the perspective of a high school teacher, it was in my lunch, kids reading lunch in my room and.

 

30:21

you know, it's the melee of one shower and one girl stands up and I don't know the context but she looks at her friend she goes, oh he's a cisgendered white man he doesn't even know his privilege and then she like walks out of the room and I was like oh man in grade 11 I would not have had the language, or even social awareness to say something like that so

 

30:41

Yes, I think that we're having these conversations that allow young people to recognize these things. And I was really proud in that moment to hear a young person talk like that. But I'll also follow that very quickly with we're having these conversations, but disability still often gets left behind in those conversations, you know, like. And so I just, you know, when we talk about sexual diversity, gender diversity, body size, diversity, skin, like cultural, ethnic,

 

31:11

skin, color, diversity, all of it, disability isn't always part of that conversation. In fact, it's not part of that conversation very often and we really hope to change that, that it becomes part of that conversation. Yes, absolutely. That's vital. Do you have anything else to add today?

 

31:29

No, just that I'm grateful for connecting with you and appreciate you having me on your show today and these conversations are just so, so important. So I'm just really, really grateful and want to thank you. That's been fantastic having your insight. You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Katie McMillan, founder of Kelo Inclusive Modeling Agency in Edmonton, Alberta. You can find them at keloinclusive.org. As she's mentioned,

 

31:57

They have clients from all over Canada. So if you've got the acting bug or the modeling bug, and you're part of the disability community, do reach out. Katie, thank you so much for joining us today. Thank you so much for having me. This was a pleasure. I'm your host, DDA Communications Manager, Evan Kelly. Tune in next time. See you later.

 

B.C. is a leader when it comes to accessibility. Just ask The Rick Hansen Foundation's Brad McCannell. However, attitudes still need to shift in order to guarantee inclusion for everyone, and that means making noise so everyone is heard. 

 

TRANSCRIPT

 

DDA Talks Accessibility with Brad McCannell

 

00:05

Hello and welcome once again to DDA's encouraging abilities podcast. I am your host, DDA communications manager, Evan Kelly. Now one of the big topics we like to talk about is accessibility. It's such an important topic because many people don't realize that at some point in their life, they might find themselves with limited mobility, limited vision, hearing, even cognitive ability. It's going to happen to all of us. Joining us today is Brad McKennell. He has the experience.

 

00:31

uh... and a resume that's gonna take me a few minutes just to read so i'll try to do the abridged version now brad's career uh... inac access consulting began in nineteen ninety when he formed uh... canadian barrier-free design that cbfd and has created to fill the gap between the application of building code in the real needs of the community of people with disabilities he himself became a c six seven quadriplegic after a car accident on

 

00:59

So he does have his lived experience. He uses a wheelchair and a service dog on a daily basis. Today, he finds himself the vice president of access and inclusion for the Rick Hansen Foundation, a member of the International Paralympic Committee's Access Working Group, and was recently appointed as the director of the Accessibility Standards Council of Canada. Additionally, his consulting has been sought by the Vancouver International Airport, Airports Council International.

 

01:27

the project advisory panel of CSA housing standards and the Vancouver 2010 Olympic and Paralympic Games. He was appointed to the newly struck BC technical committee on employment accessibility. And that was fairly recently. Now today at the Rick Hansen Foundation, he was tasked with developing an industry standard certification program that would be used as a guide to creating more accessible environments. Now that would be the Rick Hansen Foundation accessibility certification.

 

01:55

RHFAC, that's a rating program that has been rolled out nationally even to develop common methodology and common language for professionals working to do to develop access for people with disabilities in the built environment. He is, I'm not done, he is the recipient of the City of Vancouver's Access and Inclusion Award 2010 and the Canadian Paraplegic Association's Award of Distinction. Okay.

 

02:23

Brad, I think I'm done with that. Thank you very much for joining us today. Gosh, I'm exhausted. You're exhausted. It's quite a list, and it's quite an unbelievable list of accomplishments and awards. It's really, really impressive. Now, having been in the field of accessibility for almost 30 years, what are some of the major changes you've seen in BC's approach to accessibility? Well, first, let me thank you so much for this opportunity. It's a real pleasure to speak with you today.

 

02:53

I've been a professional access consultant for 27 years, but I've been a member of the community of people with disabilities for 43 years. So my experience is both personal and professional. And having said that, the difference is night and day in terms of the approach. I mean, British Columbia has been a leader in meaningful access for decades. I think it's important to recognize the history here. You know, most people don't even realize.

 

03:21

the history of leadership that we've shown here as a province and as people with lived experience. It started with the great Ed Desjardins, a personal hero of mine. This guy was something called G.F. Strong in 1948. That was the first spinal cord rehabilitation center in North America. So there's real history. Ed got the very first accessible parking space requirements written in the building code in Vancouver here in the early 70s.

 

03:50

I've hired this stuff for decades and I think understanding that and understanding our history is part of knowing why BC is a leader in the whole country in this issue. I think Sir Paul would need to be congratulated for the leadership in developing the environment, but in terms of changes in the approach, I would say the biggest change is there's a much better focus on inclusion now, understanding that wheelchair users, the focus has always been on wheelchair users.

 

04:18

and it may seem odd, probably for a wheelchair user, but gosh, no, we've dominated the discussion, we've dominated the codes, we've dominated the regulations. Now, if you ask somebody in the street about disability, the first thing that pops in their head is a wheelchair. The international symbol for people with disabilities is a wheelchair, and yet we're somewhere south of 40% of the population with disabilities.

 

04:41

So what's heartening to me is that discussion is now changing to really include people with hearing loss and people with impairment, and people in the neurodiverse community. That's a huge thing, but it's a much bigger challenge. Yeah, of course that would be. Now, do you think there are some places where BC needs to improve just off the top of your head? Where have we missed the mark a little bit?

 

05:01

Oh, well, it's really easy to poke holes in projects because everything was built using a code minimum access strategy. And as I said, if you're meeting code, you're not meeting the needs of the community. It's just vuln It's one of the biggest problems in the community is what we face in terms of the built environment is the idea that meeting code somehow makes you accessible. And don't just start, that's just not a reasonable equation.

 

05:31

and architecture schools don't teach accessibility, don't teach universal design. Museum schools, engineering, nobody thinks of it.

 

05:39

It's not part of the curriculum. It's very weird to me. I think you need a doctor trying to learn how to be a doctor without understanding nutrition. How can you know what to do if you don't know what goes into it kind of thing? No, no, exactly. Well, that's why the RHFAC was created, because we need that extra tool. The industry needs that tool. So tell me a little bit of how that certification, the Rick Hansen Foundation Accessibility Certification came about.

 

06:08

Well, we knew we needed a reference standard for the industry, but code wasn't cutting it. Code couldn't possibly see that. Our job was to tell people what's actually there and who it affects.

 

06:21

So we're not the code police. We don't come in here and tell you all the things you did wrong. And in fact, one of the critical parts of our program is to identify and celebrate access where it's there. Too often it's just taken for granted. So we want, part of our rating system is a section on innovation. So if you've done something really cool, we want to celebrate that. So the RxFAC is designed just to create a baseline specific to your facility.

 

06:47

It's a place to start. It's not an end, it's a beginning. You can't help you fix things unless you know they're broken. So how is the certification then sort of employed, if you will? Well, it's a process. To begin with, it's not another checklist. It's a rating system, it's a weighted scale that can only be administered by a person who's taking the RIT training and understand

 

07:17

the various lines. But the process is a skilled professional, a large FEC professional will come on site and use the rating system to literally go through your building and see what's there and on the weighted scale determine what level of access is being provided overall. And one of the most important keys to our process is that holistic approach. What's happening now is people are working on feature-based access. So

 

07:45

facility operator will grab a checklist from somewhere and they're everywhere. Everybody's got a checklist. I hate checklists. But they take the checklist and they run into the facility and they go to the washroom and they say, oh, look, we've got grab bars, check. We've got a lowered urinal, check. Paper towels in the right spot, check. Okay, well, you've got a pretty good washroom. And then they run over to the elevator and they say, oh, look, we've got a light colored floor, check. We've got handrails, check. We've got Braille symbols. Oh, it looks like we've got a pretty good facility.

 

08:14

No, you don't. You got a half piece in the wash, even a code elevated. Nobody checked the reception, nobody checked to see if someone could actually work there. Nobody checked if there was any kind of emergency egress for people with disabilities. It's looking at that whole experience. The RHFAC takes it from the moment you get out of your car or off a bus or just walking off the street. You go through the building, you work there, you operate there. It takes the whole experience of the user under consideration, not just whether you can go to the bathroom or not.

 

08:45

Now, when it comes to someone, say I'm a developer and I'm making a community center or something, and I get the Rick Hansen Foundation accessibility certification person coming in to check it out, am I obligated to then adhere to all the recommendations? Oh, that's one of the powers of the piece. You're not obligated to do anything. If it's designed to inform you on what the current status is exactly,

 

09:14

And so it's a process that professionalizes the delivery of accessible design to start with. It creates an inventory of access on the site. It creates incentives for building owners and operators. It places improvements into the long-term planning process. And most importantly, from my perspective, it normalizes access considerations as part of a normal design and operating process. The great thing about it is if you have an R-X,

 

09:42

reading done, you remain in control of that. We would never publish that. We would never take that information and use it outside. It's your information on your facility and it's designed to help you plan and move forward. Now, have you heard of any developers sort of pushing back against some of these ideas or changes? Oh, sure. Yeah. It's an industry that hates change of any kind. I mean, change always costs money.

 

10:08

And one of the problems we've got is as we increase the requirements in basic code and standards for the industry that can be perceived as just more regulations, more things they have to do. And what we try to help them with is the idea of the return on investment. This is where you do create accessible buildings and maybe more importantly how to change the culture within your organization to not see it as just more regulation.

 

10:36

and rather see it as an opportunity. And it's just a huge opportunity, both in terms of making money. We always say that a barrier to a person with a disability is a barrier to making a profit. But also, not just from a customer base, from a workforce perspective, everybody knows that the population is aging, but they're not equating that to the fact that their workforce is aging. And in order to keep that workforce working, changes are gonna need to be made in the built environment. So...

 

11:04

Best you know what your built environment is supplying right now.

 

11:10

And is there any other programs out there like this particular certification program or is this breaking new ground here and across the country? Oh, this is definitely new grounded and internationally as well. Most of all the solutions are code-based solutions. And that's problematic on a number of ways. Relying on codes, typically it takes an average of seven to 12 years to get a code changed.

 

11:38

in Canada, depending on where you are and who you are. And it's so common in fact, and it's so entrenched in the system, they have a name for it, it's called code cycle. So they're always 10 years behind, no matter what they do. And that's the nature of codes. And frankly, that's right and good because the industry needs that stability of code. What we're doing is coming in and saying, here's the real needs of the community. If you want to access...

 

12:04

you know, the tremendous work force that's available. We hear this all the time, watching the news, you watch an owner, oh, I can't find anybody to hire. Ringing their hands, touching their pearls, and they're, oh gosh, what are we gonna do? Well, 57% of our community's unemployed. Look, you can't find people to work for you. Where are you looking? The whole nature of this thing has to be...

 

12:28

When you make these changes, you're making changes that are profitable both on the customer side and the human side. Yes, absolutely. And that goes to my previous introduction. We're all getting older.

 

12:44

and arguably living longer and we might need to work longer. So these things need to be in place. Now we've talked a little bit about universal design. Is that really the way forward? Is that level of sort of perfection in your mind possible? Oh yeah, I mean, don't think of it as perfection. Just think of it as common sense.

 

13:08

Unquestionably, universal design is the way forward. With the caveat that the whole concept of universal design is an aspirational goal. These are principles to be followed. They're not hard inside of schools. So how that gets interpreted in the built environment is going to be different for every single site. Every built environment is unique. Every occupancy is different. It has to be recognized that the idea of fully accessible, when we hear it's laughable.

 

13:36

There's no such thing as fully accessible. You can't be fully accessible. You can't be accessible to all people with all disabilities and all occupancies at the same time. It's an unattainable dream. But what that leaves you with is setting target levels of accessibility, understanding who you are serving.

 

13:59

who your customers really are, who people with disabilities really are. And spoiler alert, it's not about a few wheelchair guys. Like you said before, everybody's gonna experience disability and so forth. It doesn't matter whether you do a face plant and you're a teenager and you end up in a wheelchair or you're 65 years old and you need a walker and a hearing aid. You will experience disability and really quickly. When, for how long? Yeah, absolutely. So how, so can a developer get,

 

14:26

get their own certification and then build? Or is it someone that's not in the company that has to come forward and do the certification? No, the only requirement is the person registering the rating on the registered state has to be an RHS distance professional. So for example, you could take the course and assess your own property.

 

14:54

Well, the sales safe on that for us is in the process. Once an RHFAC professional has posted something in the registry, it immediately goes to the CSA, CSA Outbreak Registry, the third party, and they vet it for accuracy. And then it goes to an adjudicator who looks at it and makes sure that the RHFAC professional wasn't this low and small. So you can't just say, hey, it's good old testing.

 

15:22

It goes in, our indicators look at it, they review the pictures, sometimes video as well, and they establish that yes, that is in fact a gold building, or yes, that is 80% on our scale. So that allows you to be able to assess your own building. And what's important for us there, we want as many people as possible to take the RITFAP training. That's the cultural shift we're looking for.

 

15:47

It wasn't enough just to create a bunch of access professionals. We've got access professionals all across the country. Really good ones. What we needed was to shift the actual existing culture, the existing industry, the existing architects, planners, and building inspectors, and help them understand the real built environment as a speak of disabilities and understand it's not just about a few wheelchairs.

 

16:13

And so the goal of the developer, whoever is doing building, is to get what you mentioned was a gold rating? Yeah, and that could be different from building to building. So in our program, if you get more than 80% of the available points, then you're in gold territory. Some people may get that because they're just exceptional for people with vision loss. Some people may get that because they're exceptional for people with hearing loss.

 

16:39

The object of the extra guide is to get more than 80% of the available points on our scale. And just by way of comparison, if you built a commercial space and followed the Ontario Building Code, accessibility provisions right to the letter, then you'd probably get up around 40% on our scale. So half on our scale, 60%.

 

17:03

So it has to be better than that, but getting to that level is not really difficult once you sort of look at the system and look at the low-hanging fruit, as we call it. So much of creating access is really easy, really inexpensive. It's just a matter of knowing that you need to do it. I want to switch gears a little bit, but is there anything else you'd like to add in terms of that sort of certification piece? Oh, I guess how important it really is.

 

17:32

It's a way of measuring how we're doing in terms of creating meaningful access. So it's a measuring tool, but the real power is the training courses. The great advantage we have is once we start showing professionals in the field barriers to people with disabilities, once they start seeing that, they can never stop.

 

17:55

And so it's really quite heartening because it really is. It's a total ITV experience when people are taking our course and then come out there exercising. And once they start seeing all that stuff, that I've got like a disciple of, I can move on to the next week because that's the culture of shift we're looking for. So I just implore people to take the training, whatever they can. I guess I should ask, for builders, developers, whoever, how do they, do they just get in touch with the Rick Hansen Foundation to get the course going?

 

18:26

Yeah, rickhanson.com, best place to go. There's lots of links there on accessibility. And there's kind of two levels. There's the base level, which is called Accessible Spaces 101. And that's for people who are interested in universal design. And I just want to understand that a little more. But there's also the professional course, which is the Rick Hanson Foundation's Festival Certification Program itself. And that's restricted to industry professionals, so architects, engineers, people with experience in the built environment.

 

18:54

And that's the professional side of the thing. But there's two ways to come in. The best portal of all is RickHanson.com. There's so much stuff on there. It's very educational. I actually lied. I do have another question. How has this been received across the country and globally? Well, I'm really, really pleased to say that it's been accepted quite well.

 

19:20

nationally, it's a process. We're actually, like I said earlier, changing an industry that doesn't have any kind of change. But what's happening is people are seeing the value in it. They're seeing how by using the RHSC, it focuses their energy and puts the whole process of accessibility into the normal design and planning process. It's that idea, if it's measurable, it gets fixed. If it's not measurable, it just becomes an anecdotal story.

 

19:49

creating the common language, creating common methodology means that we're all calling access the same thing, so it's measurable. That has found great footing across the country. And for example, the new, as you may be aware, the repairing and rebuilding the parliamentary precinct, parliament buildings in Ottawa and everything has to be read and read. They're going to use our RGFIC gold as their standard. It's that kind of traction that we're getting went across the country. Halifax is doing amazing things.

 

20:18

Vancouver's doing amazing things. So having that kind of uptake has been really heartening, but even more heartening is when we took the program to international conferences. And everybody said the same thing. They said, my gosh, nobody's doing this. Everybody's taking a code approach. And the problem with codes is, you know, it's an old joke. It's like the slogans will continue until morale improves.

 

20:44

You can't just keep making the clothes harder and harder than the penalty sufferer and topper without educating the industry. The industry is paying for all this. So rather than have them feel it's just, oh gosh, it's more regulations and more hassle, the opportunity here is to show them the opportunity to make money on this deal. How about they return on investment? What's in it for you? And it's not just all altruistic and feel-good stuff. It's dollars and cents.

 

21:14

That's fantastic. It sounds like you do an incredible job. So your history here in BC goes back obviously many years. You've been working on the 2010 Olympic Games as a consultant. Tell me a little bit about that. Oh, that was probably the high point of my career to be honest. It was, I'd gone to Beijing in 2008.

 

21:37

which was one of the largest international Paralympic Games events for participants. There were well over 4,000 athletes there. And that was a big undertaking. But to do that same thing in winter is a much different proposition. But Van Ock was fabulous. The Vancouver organizing committee called Van Ock. And when I approached them at the bed stage, and I said, we should include accessibility right from the very beginning there.

 

22:06

And to their credit, they got on board right away. But we were doing things at that event that never been done before in the Olympics. For example, on the downhill ski run, we were able to put 200 people with disabilities along that route, outside, watching the actual ski event, watching the high quads.

 

22:27

event-dependent quads and wheelchairs parked on the side of a mountain to watch an event. And it was fabulous. And we were able to do things unheard of in the presentation of the Winter Games in particular. And so for me, it all came down to the end when Jacques Rignes, who at the time was the head of the International Organizing Committee, and he always designated the games, each game, every game is the friendliest games or the most wonderful games or the best games.

 

22:56

He designated Vancouver's games as the most family-friendly games ever. And that's me. That's universal design. That's that idea that if we can make it work and face and fund for young people and old people, everything else in the middle will work itself out. And we were able to do that in unprecedented terms. It was a huge success for me. Wow, that must make you feel quite proud.

 

23:24

So how does your work with the Rick Hansen Foundation differ from your work with the Accessibility Standards Canada Board? Ah, well that's, I love the apples and oranges, that the ASC, Accessible Standards Canada, is mission to design standards to support building folks across the country, and the idea is to get federally regulated.

 

23:50

businesses, operations to align to this code. And then they get the provinces to align to that again. So we have a standard consistent messaging across the country. And that is important as a code approach. But as I said earlier, that's only half the problem. We need strong codes, we need strong enforcement and we need significant families for people who don't follow the code. You need the big stick, but that by itself won't get it done.

 

24:16

If you want real change, you have to shift the culture. You have to get people to understand who this is about. It's not about a few wheelchair guys. It is about you, your mom, your family. Because everybody's going to experience this ability at some level. So making the built environment work is the absolute key to everything. The need for accessible transportation is lessened if there's no acceptable destination. And if you can't get in a building, then the best employment equity program in the world won't work if I can't.

 

24:46

I can't get into buildings with a lot of people. Getting this built environment sorted out is a single step. But it takes two things. It takes really strong codes, but it also takes an educated industry. An industry that understands your put-on investment and understands that this is a huge opportunity. This isn't more regulation. This isn't onerous. This is a chance to cash in. So some of this barrier breaking is just...

 

25:13

the changing of attitudes i mean according to your linkedin bio you say the biggest barrier to success for people with disabilities is the overall attitude of society the society's assumption because you have a disability it means you can't achieve as much are we are uh... society's attitudes getting better is inclusion working all yeah it's because it's becoming personal people are seeing it at home you know we did in angus we call

 

25:41

In the past, it was, oh yeah, taxes is good, I think it's good for those people, it's good for someone else. This was the first time that 30% of the respondents came back and said that they saw it in their own lives. They saw the house that they planned to retire in, when they looked at it again, realized it's nothing but tears. And so people are starting to take it personally at that level and that's where the real change is coming from. Disability taxes roughly 50% of the population today.

 

26:10

Today, it's not something that's going to happen down the road. We're not promising things in the private. You know, it's interesting how we get to that number. It's, you know, right now 24% of the population reports having a significant disability. And the key word there is reports, because there's tens of thousands of people who don't report their disability for a lot of really good reasons.

 

26:33

But you know, let's just take the 24% per second. Every one of us has at least one other person in our lives. Mother, father, sister, brother, neighbor, lover, best friend, even if it's a paid caregiver, even if it's a paid lover, we all have at least one other person in our life that also benefits from an accessible environment. And that's whether it's because it's easier for me, therefore it's easier for them.

 

27:00

It's also safer for them to help me, it's a better environment for them to assist in. And they remain able-bodied people instead of hurting themselves, getting in and out of the bathroom with them. And so, that's where the payoff is. And it sounds easy to accomplish. It sounds like just changing that attitude and changing our approach to things is not as difficult as people would think.

 

27:25

No, no, it's just what the key to it all is, is conversation, conversations like this one, helping people understand what access is really all about. And the idea that it's about a few wheelchair guys, and we fight that every day. Every presentation, I kind of start with that, just to help people learn to stand that we're not talking about a few wheelchair guys.

 

27:50

Now, I guess the one thing that's sort of been highlighted in the news a lot lately though, in terms of industries making changes, is airlines. There's been news stories about people having their wheelchairs lost or damaged beyond repair, and some of these wheelchairs are really expensive, like three, five thousand dollar wheelchairs. As a consultant, so like what sort of policies would you like to see in place to ensure that this doesn't happen?

 

28:20

Well, first off, your estimation on the cost of wheelchairs is way low. I have a power chair and it's $38,000. Wow. And that's pretty typical. So people who are vent dependent, people who are vent dependent have much more expensive chairs. And that's why it's so critical when a piece gets damaged.

 

28:42

Yeah, I think the latest piece I saw just the other day, somebody destroyed a guy's wheelchair, and they gave him what we call an active duty lightweight. It's the airport chair, it's a little aluminum thing. They cost about 600 bucks. So, you know, my chair is 38,000, that's about, that's a lot. But they give you that chair and they're thinking, okay, he's got a wheelchair. What's the problem? The problem is, you know, wheelchairs are very specific.

 

29:11

You know, they're prescribed for you. The dimensions are exact. How they hold you, where your back is to be, where you're vent dependent, how all that works. It's all critically and personal. You know, if you buy a wheelchair, I buy a wheelchair for $38,000. If I tried to sell it now, I'd get raising $1,000 for it. Because it's made for me. It's not made for anybody else.

 

29:31

And so it's understanding it. And so the airlines have got to figure this out. Now, fortunately, there's a real big movement. I'm not sure if you've heard of it. It's called the All Wheels Up. And it's a group of people who recognize airlines wrecking equipment has become way too common. I think the last that I heard was if you bring a mobility device on an airplane, there's a 20% chance it would be harmed or destroyed in that trip. So that's ridiculous.

 

30:00

I don't know the airlines have to understand how critical these are these are just like something you just replace well No, exactly. They're an extension of you aren't they like that's not just a chair. Oh Yeah, and they're not interchangeable Like I Rick Hansen's my boss. I can't use this book here But I was I was making there's a lot of Excuse me. There's a effort called all wheels up and that's what they'd find was they

 

30:29

We figured out a way you can take your wheelchair right on the airplane and just use the same kind of attaching device that using cars Whether it's a Q-strain or a strap-down system. So you'd stay in your own chair and you get on the airplane that way That would eliminate Giving up your equipment it would give people their own seating and a long trip which is really important for most of us

 

30:51

But it's an idea that's really come. The thing that held it back for so long was there was no crash testing available, so we wouldn't know the real results. Well, that's now been completed. So it's a completely viable thing. Now the hard part is to get airlines to give up the first cabin and move it to the back. Because the only way to work on an airplane is we can get in the first slash, but I can sit in the front. I think it's coming, I think it's inevitable. I don't think the airlines can keep working on equipment like this.

 

31:21

I mean, they got enough problems without wrecking our stuff. Yeah. Well, it seems like there's enough talk to moving this stuff forward, so that's good. You know, you talk about your chair being worth $38,000, which is unbelievable. Now Canada's been moving forward on the proposal. Yeah, I think that's it. I think people who are sort of like typically developed or haven't suffered injuries and then lack their mobility don't quite understand how costly it can be to have a disability.

 

31:51

So with that said, what are your feelings on the proposed Canada disability benefit that's still inching its way through the government? Well, inching its way through indeed. But it's a complete game changer. Like you say, people don't understand how much it costs to have a disability. At the risk of being way too personal, I could ask you how much does it cost you to go to the bathroom and pee?

 

32:19

Not a whole lot. Cost me five bucks. Really? Every time I go. Six hundred dollars a month I have to spend in catheters. And that's not covered by anybody. That's out of your own pocket. Wow. You know, if you want to go buy a Honda minivan, it's going to cost you around thirty-five thousand bucks. But if I want to go buy an accessible Honda minivan, it costs around ninety thousand bucks.

 

32:43

If I want to go talk to a lawyer, all I have to do is pay the lawyer. But if you're deaf, you also have to pay for an interpreter. And on top of that, just to add insult to injury, you have to pay GST on that. You're being taxed on your need for an interpreter. So all these hidden expenses around people with disabilities are having to pay.

 

33:06

having a reliable income, having a little more in the pot to work with, you know, windfall benefits for people. This is survival. And so it's critically important and yes, it's inching its way through and it's so vexing to see how long it's taking to, to me, remedy the obvious. Yeah. That's, that's, you know, that just brings that right down to reality. It's, it's, it's kind of scary.

 

33:33

So we're just about wrapping up here, Brad. What can the general public do to really foster an inclusion and accessibility from your point of view? Oh, just demand more. Don't go in the back door. If the front door is not accessible, don't go there. Don't go to noisy restaurants. Insist on alternate formats like large print and plain language for documents. Don't be quiet about it.

 

34:02

You got to make sure the rest of them knows why you don't want to go there. You have to make sure that employer if he's offering the position and not offering alternate formats for the hiring of the service, they're aware of both the legal and regulatory pitfalls, but also just how they're missing it. And I find that when this pointed out most often people go, oh my gosh, I never even thought of it. Well, on the one hand, it's terrible because you never even thought of it. You know, like.

 

34:29

with a thing about people with disabilities, right? Where World Health Organization, he says there's 1.3 billion people with disabilities in the world. That's a bigger market than China. Yeah, it is. So how can you keep ignoring it like that? It's just so incredibly vexing. Yeah, there's buying, there's a ton of buying power there, right? Businesses need to learn. And that's that return on investment we were talking about earlier. Understanding those kinds of things and how, yeah.

 

34:59

We've got to stop being quiet about it. You've got to start demanding more access and not putting up with this status quo stuff because status quo is just, we don't have any status at all. No more, it's a nice guy. He's trying to get loud. Yeah, exactly.

 

35:18

So it's, you know, I mean you sounded very, very happy with the progress that British Columbia in particular is making in terms of accessibility and inclusion, but sometimes on a smaller scale, like you're talking about restaurants, it feels like there's still quite a long way to go.

 

35:37

Well, yeah, most of it's education, but it's also the financial reality. There's a perception out there that creating access is expensive. And it's just not. It's probably the most of the stuff we call it low hanging fruit. You could do so much to make your place more user friendly, just by doing simple things, simple things like having a hearing loop at reception desk or meeting with anybody with a hearing aid, that's a game changer.

 

36:02

It's a thousand dollars at the installation, it's cheap. Using wave finding, when people talk about wave finding, they think we're talking about signage, and signage is really important. But there's other wave finding things you can do that reduce stress and make things really easy for people. You can use color, you can use texture, you can use scent, you can use sound.

 

36:24

you can use all these things. We had one problem, this goes back a few years, but the client's office was in a grey building, in a grey door, a grey entrance, everything was grey. People were busy, they had a hard time finding the door. So we planted lavender and then they knew where they were by the smell. So there are all kinds of things you can do that are really simple and really cheap. You know, we call them a can of paint.

 

36:52

One of the most vexing things in our community is the building code works really, really hard at getting people with disabilities into buildings and doesn't care at all about getting them out in an emergency. There is no requirement for emergency egress to be accessible. So the next time you're standing in front of an elevator and you see that little plaque

 

37:16

Where's the little plaque that tells me what to do? In case of fire, good luck sucker. You know, good... So it's that whole idea that... It's a full circle here. Getting me in the building isn't enough. It can't get me out. Yeah, and to me, you know, from someone who works in communications, I think it's... If I was to go into business, and I could market my business as accessible...

 

37:42

you know, in inside and out, that would be a great draw for people. You'd make money. Yes, you would. Yes, you would. And we, you know, we did another Angus repo and we found that already today, 30% of the population is making accessible business already today. It's not future stuff. And so it's remarkable to me that there is any kind of resistance to this. If I'm in the, if I'm in the industry, if I'm building any kind of public...

 

38:10

shopping malls or anything. I don't know how you could not put this at the top of your list because 50% of the population is going to be affected by it. 30% are already deciding. Can anybody decide that they can close their doors to 30% of the population? That's not possible. That would just be the wrong decision, that's for sure.

 

38:29

Now it's much harder in your business. Communication is really meaningful access. Communication is a tough job. Well, yeah, I mean... So many levels of it. Yeah, and you know, we're building a brand new website right now for DDA, and we're ensuring that everything about it is accessible. We're adding some widgets that make it, that give people lots of options. So it's actually quite a good experience, good learning experience for myself even, so. Yeah, and even the plain language movement.

 

38:57

getting documents so that they're not so complicated and that people can understand the means of living. Now, there's lots of people that, you know, that's a specific need for, but that's one of those things that everybody would benefit from. Absolutely. And we all need to keep that in mind when we're doing documents and putting them on the website. The other big thing is to create another ASL window so that if you have a, if you're introducing a program, for example, and you want to reach out to the community, having a little window there

 

39:27

and click on it and they get an ASL interpretation of what's there, it's a game changer. Yep, absolutely. And that's true inclusion. Yep, yep. We will get there, Brad. We will absolutely get there. Anything else to add today? Oh, no, I just want to thank you for the time. As I said earlier, this is the kind of conversation that we all need to have. And just to recognize that it's an opportunity, you know. Right now.

 

39:56

This whole idea of able-bodied males, the design, the building code.

 

40:02

the design parameters are all built around 18 to 55 year old male. That's just got to stop and as soon as you point that out, as soon as the architects, planners, owners, operators, as soon as they see that, they're not connecting the dots. But as soon as they do, it's wonderful what happens. So thank you for helping me connect the dots. My pleasure. Brad, it was a pleasure having you.

 

40:28

Well, you know, this is a very deep well that we kind of brushed over. But almost any one of your questions, we could probably do a show on. Exactly right. Maybe another job. Absolutely. We'll do a few more. Okay. So while you have been listening to DDA's Encouraging Abilities podcast, our guest today has been the intrepid Brad McAnnell, the Rick Hansen Foundation's Vice President of Access and Inclusion. Brad, thanks again. I am your host, Evan Kelly. We'll see you next time.

 

Inspired by an accident ten years ago that left her brother with a life-changing intellectual disability, a young B.C. artist creates a book about inclusion. DDA chats with Invermere's Veronika Kitzul.

 

TRANSCRIPT

 

His Name is Nicholas

 

00:05

Welcome to DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. One of DDA's biggest missions is to create a community where everyone is included and where everyone belongs, regardless of ability. Sometimes that comes down to simply supporting and advocating for those who have the same mission. Today, we are talking with Veronica Kitzel, who lives in Invermere, B.C. Now, Veronica is an artist with a huge amount of talent.

 

00:33

especially working with charcoal as a medium. Now currently she works as a social media manager and artist by day and bartender by night. And while she is the messenger here, she isn't the story, her brother Nicholas is. When her brother was eight years old, he was in an accident in 2012 that changed the course of his life with an intellectual disability. We know that when someone has a disability, society makes it hard for them to be included. So...

 

01:00

Veronica wrote and illustrated a kids book to help foster a sense of inclusion in people at a young age. The book is called His Name is Nicholas is now available as a teacher's aid. Welcome to the show, Veronica. Thank you so much. So when did you get your start in the art world? Is this something you're currently pursuing as your your main profession?

 

01:26

I started drawing in a junior high and learned about art through high school and university, receiving a minor in fine arts with my science degree. Since graduating, I've been working part-time as an artist as more of a side business than a full-time profession. I hope to always find time for art in the future, but I also hope to go back to school for something healthcare related like dentistry or naturopathic medicine.

 

01:50

naturopathic medicine, that's interesting. Now so, Art, is this something that you use your voice with? Is this something that drives you to make a change in the world?

 

02:02

Oh, definitely. The beauty of being an artist means that you have the ability to reach a wider audience and communicate visually in ways that other people cannot. There's nothing wrong with doing art for fun or for the challenge. But when you focus on a subject or a message and get the chance to exhibit it, you can show people a perspective that they may have never considered before. So where do you draw a lot of your inspiration from?

 

02:28

It depends on the project. So when I want to develop my skills, I choose a subject that I find challenging. For example, water, reflections, and glass are difficult to capture. So I've taken inspiration from work as a bartender and drawn a couple processes in mixology. When I was in university and had free range to create whatever I wanted, I drew inspiration from healthcare, combining my scientific and artistic interests, as well as Nicholas. So for example, for a digital art class,

 

02:58

to give hope to people facing brain injuries in Canada. I also created an installation piece with drawings of Nicholas and his story. They were surrounded by a cover with the disability symbol cut out of it. And I did this because I felt like his wheelchair all people see when they first meet him. So I wanted people to physically go up and look through and look past that symbol to learn more about him, his story, his personality, et cetera.

 

03:28

I'd just say overall, I'd say healthcare, my brother, and moving to the mountains have been my biggest inspiration. So before we start talking about Nicholas and the book, where can people see erot? Can they buy it?

 

03:41

Absolutely. Here in Invermere, they can see it at Black Star Studios, Beginnings Restaurant, and Ular Bar. Online, people can see my work on Facebook, Instagram, and direct message me through social media if they're interested in buying a piece or commission. Well, that's great. We'll get a little bit into more into connecting with you later on. So, right from the start here, tell us a little bit about your brother.

 

04:04

for sure. So growing up, Nicholas was always an active kid. He would rather go bike riding, play soccer or play with Lego instead of playing video games. He was well behaved, received good grades in school. And yeah, he was overall just a great kid.

 

04:19

When he was eight years old, he had an accident at school. So the teachers required him to wear a hall pass on a non-breakaway lanyard when he went to the washroom. The floor had been slippery and he fell. The lanyard somehow got caught on the bathroom door latch. Unable to free himself and laugh for a better term, he was essentially strangled until another classmate saw him in the bathroom stall and informed the teacher that something seemed wrong.

 

04:48

So from that, he received an anoxic brain injury because the oxygen was cut off to his brain. The doctors at the hospital didn't give us much hope. They said he'd be abuturable in a bed, on drugs for the rest of his life. They implied that cutting off life support and organ donation would be better than living with no quality of life. Thankfully, my parents did not take no for an answer, especially my mom. She would stay up late every night researching alternative treatments and eventually weaned him off all medications.

 

05:17

So for several years she quit her job just to take care of Nicholas and take him to therapies and treatment. Today, he's still wheelchair bound and has a bit of trouble communicating, but he can say some words and he has surpassed every low expectation that the Canadian doctors have given him. That's pretty unbelievable. I mean, what a testament to your mother.

 

05:45

That's incredible. So, how old were you when he had this accident? I was 14 years old when he had the accident. And so when that happened, how did that make you feel? I felt very powerless and I wanted to take his place because he'd always been such a good kid and he deserved the world.

 

06:04

He deserved everything that my older brother and I experienced, but instead it kind of felt like his childhood was taken from him. I still remember the morning of the accident. He was on his way to the bus stop when I just got out of bed. I thought to myself, I should say goodbye to Nicholas. Oh, that's okay. I'll see him after school. And I have never regretted anything more in my life than when he didn't come home that day.

 

06:25

He was in the hospital for four months and I was still young. So people didn't really know what to tell me. They said he was in this half coma sort of thing. His eyes were open, but they weren't moving much and he could cry, but he couldn't speak. So the hardest part was coming to the realization that he wasn't in a coma. He wasn't going to magically like wake up someday because he was already awake. He had just lost his eyesight and the ability to speak. And it was going to be a long road to recovery.

 

06:53

Well, that must have been quite devastating for your family at the time. Mm-hmm. No, so tell me a little, I mean that was, you know, back in 2012, you were already a teenager at this point, so what was it like growing up from then with a sibling with a disability? It's a really interesting question that I don't think I've been asked before.

 

07:14

Everything changed after the accident. It started with a family meeting with my parents, myself, and my older brother, Jacob. They said they wanted to create the best quality of life possible for Nicholas, which meant they wouldn't be there for us as often anymore as they had to focus their energy and resources on him. Jacob and I understood because we also wanted the best for Nicholas, and so we grew up quickly because of that. We put Nicholas's needs first, which meant helping with his feeding, therapies, et cetera, before completing our homework.

 

07:44

for our own school trips because adaptive equipment is incredibly expensive. Adapting to wheelchair accessible life is difficult and you don't realize how truly blessed you are with mobility until you experience life without it. I felt that no one really understood the extent of the changes we made except for other families in similar situations. Right.

 

08:06

That makes sense. Now, studies also show that siblings who grow up with someone with a disability become more empathetic. Do you feel that about yourself?

 

08:16

I think it's definitely made me a more empathetic person. I would have never understood what wheelchair accessible life entailed until I was part of it. I think it also made Jacob and I more grateful, independent, and mature. It inspired me to volunteer for Special Olympics and work as a personal carrier for several years. Oh wow, good for you. So now getting back to why we're here, we're talking about your book, His Name is Nicholas. What inspired you to write that?

 

08:45

or I should say illustrated. I know your mom was the one who actually wrote the copy for the book. So what what brought this inspiration to where it is today?

 

08:57

Yeah, so I was doing a self-led project with Special Olympics based on spreading the word on inclusion. So naturally, I took inspiration from my family and the fact that it really bothered us when kids stared at Nicholas. Additionally, I took a literature for youth class in university and remembered learning about the CCBC diversity statistics on children's books. In 2019, they found that only 3.4% of books had a character with a disability.

 

09:27

the population of people with disabilities is much higher. There's a huge under-representation of that and as well as a lack of exposure and integration in schools, which is why I want to create a tool that could help teach kids about inclusion. So where, but when you look at society as a whole, how do you think we're doing in terms of inclusion, inclusion rather here in 2023?

 

09:52

Um, from my family, my family's perspective, not great because after Nicholas's accident, I saw him lose all his friends. People stared at him. People no longer talk to him in an age appropriate way.

 

10:09

They would use baby talk when he was a teenager and that really bothered me. I think there are certain organizations that do a great job at it, including their members with disabilities, but overall there just seems to be a lack of understanding in the general public. Yeah. In bigger cities tend to do a better job of making places accessible as well. And Canada seems a bit behind compared to the states because we've traveled there a lot for Nicholas's treatments.

 

10:38

So like, for example, we learned that every public pool in the States must have a lift, which is not a rule here. And we noticed way more accessible parking spaces, walking trails, ramps, stuff like that, that makes wheelchair accessible life a lot easier. Wow. Now, your mom helped with the writing. Tell us how that went.

 

11:01

Well, first, I just want to mention how she is a saint for agreeing to write it in her non-existent free time. She works full time as a teacher, then she goes home and does mixed therapies, cleaning, and evaluates the practicum students that help out. Overall, it was a great collaborative experience, though. I gave her the illustrations with a rough idea of the storyline and things I wanted to include. She wrote the book and we would video call to discuss it. My mom's colleague, who is an English teacher and has experience with special education,

 

11:31

the book and since I wanted this book to be a tool for teaching it was a great asset to have two very experienced teachers involved. Yeah that is really good. So where do you want this book to be seen? What is your intended audience?

 

11:49

My intended audience is elementary students because they're curious and probably have the least exposure to and understanding of disabilities. We found that they also stare at Nicholas because they're curious and often don't have anyone who can explain that he's not that different or how to interact with him.

 

12:13

I didn't have an official publisher for the book because I didn't want to sell it. My goal was just to distribute it to schools, teachers, anyone willing to use it. And honestly, making it on this podcast has allowed me to bring it further than I imagined. And I'm so grateful for that. Yeah. And we're happy to do this for you. And the fact that you're...

 

12:35

doing this all for free is absolutely amazing because you're an extremely talented person. So what has the reaction been so far? Have you managed to get it into some classrooms at the moment?

 

12:48

Yeah, the reactions have been really heartwarming. Honestly, I have gotten a ton of support from my teacher friends who want to use the book in their classrooms. The local libraries and schools have taken it in and the local newspaper wrote about it. From that article, people with intellectual disabilities have actually reached out to read the book as well as share it with others because they were just so excited to see a project like that. Um, it also made it into my mom's school. She was a guest speaker at a big celebration of learning event.

 

13:18

and I got to go in and help her answer questions. That's excellent. And so are there more books like this to add in your future? Or maybe a Nick... I mean Nicholas is older, he's older now. What's he up to today? Is there like a book about Nicholas and his later teen years as he approaches 20? Maybe for a bit of an older audience?

 

13:41

I'm not sure about books in particular, but if another opportunity arises where I can utilize my artistic skills to spread awareness on inclusion, I will absolutely take it. Nicholas right now is still in high school, and now that it's winter, he's doing a bunch of activities like cab skiing on Sunday, which is actually one of the illustrations in the book.

 

14:11

Stuff like that, just anything that we can, or anything that allows him to do the sports and activities that he once loved. That sounds really great. Now, just back to Nicholas for a moment, what sort of role did he have in the process of putting this book together?

 

14:33

We did want to get his approval, but he can only answer yes or no questions. So after it was written, we read out each page to him and asked him if it was correct. And each time he looked deep in thought and then said, yeah. There's also a page that mentions how he enjoys swimming and splashing his mom in the face. And so he laughed when we read that out to him. So I think we have his approval. That's good. Anything else to add?

 

15:02

to this podcast before we wrap it up? I just want to remind everyone that this is a free tool that anyone may use to teach about inclusions and intellectual disabilities. At the back, there is a discussion section for parents and teachers to use with their kids so that they can discuss the topic and think critically about it. Anyone is welcome to contact me for a digital copy and print or distribute it as they like.

 

15:27

You meant there's a mention in the back of the book about the Special Olympics BC. Now you talked about that a little bit earlier. Were they involved somehow in the production of the book as well?

 

15:37

Yeah, so Special Olympics BC runs a program called the Youth Engagement Project. So I was accepted as a volunteer to run my own self-led project with the goal of spreading the word on inclusion. So they gave us online training on how to run a project like budgeting and engaging stakeholders, stuff like that. And my work was a product of the Youth Engagement Project.

 

16:01

So can people find the PDF version through Special Olympics as well? Yes, definitely. So on Special Olympics BC's website, if you go to their youth engagement project page and go to the 2021 to 2022 projects, my name is in there and there is a link to the PDF version.

 

16:29

You've been listening to Developmental Disabilities Association's Encouraging Abilities podcast. Our guest today has been Veronica Kitzel, author and artist of a new book called His Name is Nicholas. The book is about including people with disabilities. It's available through the artist herself as well as online PDF versions for anybody interested in using it as a teacher's resource. It is free. To find out more, you can contact Veronica herself.

 

16:57

at veronikakitzel at gmail.com. That's Veronica with a K, last name, K-I-T-Z-U-L at gmail.com. Veronica, thank you for taking the time to chat with me today. Thank you so much for having me. We'll see you next time. I'm Evan Kelly.

 

Ableism is an issue. From inadequate designs to being left out or looked down upon, ableism prevents many from being included in everyday life. The Office of the BC Human Rights Commissioner and Disability Alliance BC have joined forces to address the issue and created a new awareness campaign called Rewrite the Rules.

 

TRANSCRIPT

Ableism Prompts a New Awareness Campaign

 

00:06 Time again for DDA's Encouraging Abilities podcast. I'm your host, DDA Communications Manager, Evan Kelly. So thanks again for listening in. Today we're talking about ableism. Now what is that? Simply put, it's discrimination in favour of able-bodied people or people without disabilities. Through that lens, our guests today are Kasari Govinder, BC's Human Rights Commissioner since 2019, and joining her

00:29 is Selena Dewar, an advocate with Disability Alliance BC. Now a little bit about the commissioner. As an independent officer of the legislature, the commissioner is uniquely positioned to ensure human rights in BC are protected, respected, and advanced on a systemic level throughout our society. And Selena is a disability advocate who is a person who identifies with a disability. And although she is not currently practicing law, she does have her education in law.

00:59 She is currently working as a law clinic assistant with the Disability Alliance. So this month is also Community Inclusion Month and Disability Employment Awareness Month. So there's a lot to talk about when it comes to inclusion and ableism. This month, this is why we've got Kasari and Selena here today. The Office of the Human Rights Commissioner launched a new campaign called Rewrite the Rules, a campaign designed to raise awareness, deepen understanding, foster dialogue, and spur action

01:29 to people with disabilities. So thank you for after all that thank you for joining us today. My pleasure. Thanks for having us. So Kasari tell me a little bit about yourself. How did you get involved in being a champion for human rights here in BC? I have spent my career and in fact my life really working on these issues to some extent.

01:52 I grew up in a family that was deeply committed to human rights issues and it was a common dinner table conversation with a real focus in our context on racism and sexism. My father grew up in apartheid South Africa and that side of my family is Indian, so experienced a great deal of racism and the impacts of systemic racism. So those were issues that inspired me from an early age and I have a lot of background and have spent my legal career.

02:21 working on equality issues in a number of different contexts, again, including gender, disability work, race and indigeneity issues, and so on. And so now tell me about the Rewrite the Rules campaign.

02:38 This is a public awareness campaign that we launched this year to unpack the concept of ableism and more specifically try to start to undo some of the systemic discrimination that people with disabilities face in our society. Now we talked about, you've also mentioned in some of this campaign about unwritten rules. What are some of those unwritten rules?

03:04 Yeah, we called our campaign Rewrite the Rules and the idea is that ableism is really often a set of unwritten rules that we don't even consciously see or speak about, but that we still follow to a large extent and that that's the kind of society that disables people. The idea here is really that disability to try to...

03:32 So we begin, especially as people without disabilities, to understand that disabilities are not inherent in the person. They're the way in which society creates obstacles to the participation of folks who are not typically abled. And so it creates an exclusion that is really about how we build the world around us rather than what's happening for an individual in that space.

03:59 Yeah, and so how much of the responsibility is with individuals in sort of addressing the unwritten rules, and how much responsibility with government or institutions, even people like organizations like us, or businesses? Who owns most of the responsibility here?

04:15 I think it's across the board. I think everybody has some role to play here. And I think it ranges again from actions that concern individuals, and those are important. So, you know, if you're an employer or you're a service provider or you're a housing provider, you have obligations under the Human Rights Code to accommodate people with disabilities and people with diverse ranges of abilities to the point of undue hardship. So you need to do everything that's reasonable to do.

04:45 So you need to build that ramp or to create a flexible work schedule or to accommodate doctor's appointments or whatever you need to do for that individual to create a safe and inclusive workspace or housing space or so on. So that's an important part of the human rights landscape. But our obligations don't end there because if we're just dealing with discrimination on an individual basis, we'll never actually transform our society to take away, to...

05:14 these disabilities in the sense these obstacles to participating in our broader social fabric and our economic world and so on. So what if we created flexible work schedules across the board where possible? That's not possible in every workplace, I appreciate that. But in many workplaces, we do, we have very rigid schedules because that's just always the way we've done it as opposed to thinking about things differently in order to ensure that a wider range.

05:43 of folks are included in that space. So that's the kind of systems change that this campaign around rewrite the rules is trying to get at. Now, Selena, tell me a little bit about yourself. You're a tax advocate for Disability Alliance BC. I previously worked as a tax advocate where I helped people to file taxes so that they got the benefits that they are entitled to. So Disability Alliance BC for your reader, your listeners who may not know.

06:09 is a cross facility organization that's over 40 years old. And it supports people throughout the entire province to live with dignity and independence, to participate equally in fully in society. We do that through our systemic advocacy, but also through our advocacy programs like the tax program that you mentioned, and our law clinic and our advocacy access program that helps people apply for benefits. And so I've been working with the ABC for six years, more than that.

06:39 helping people with their taxes and to apply for the disability tax credit. But now I help with our law clinic, talking to clients and helping them connect with our lawyers. Well, that sounds good. So what is your role with the Rewrite the Rules campaign? On behalf of our organization, I actually participated in the campaign and kind of gave feedback to some of the sort of draft concepts.

07:08 that the commissioner's office had put forward. And basically, our executive director was looking for someone from our office who had both lived experience and direct client contact that would give sort of a disability lens to reviewing these things. And so that's how I got involved. And it was a pleasure being involved for a number of different reasons.

07:36 Now, one of the things that Kasari mentioned is one of the, in the last question that I asked her, she's mentioned, you know, we have to build that ramp. And I recently had an experience with a friend of mine who is in a wheelchair. We were at a club downtown and, you know, he was coming in to do some photography work that I hired him for. And he comes in the front door and that's great. And then we both, you know, we both grabbed a beer and we looked out the back and low and beat it.

08:06 the only way out the back is stairs. So he can get in the front but he can't get out the back. From your point of view, how is BC doing in terms of confronting ableism and dealing with it? We have a long way to go actually and that's why I was so excited to hear that the human, the Commissioner's office was taking on this issue of ableism and the unwritten rules, both as an advocate and as a person with disabilities because

08:36 The type of situation you just described with your colleague is something that I have seen myself, particularly when I go to socialize with friends who are in wheelchairs or even for myself. A lot of times when you go into spaces, I mean, I can't even get up to sit at a lot of the tables because they're all bar height. And I think just in the sense of physical spaces, there are still problems. Even the ramps that exist are not great or they're in scary places.

09:05 dirty alleys or whatever. But I think as the commissioner comments allude to, this ableism is a lot broader than just the physical spaces as well. Ableism is in the way that we think and the way that we relate to people who have cognitive disabilities as well or mental health disabilities. So I wanna put that out there. And I wonder if I can comment on some of the ways that people...

09:34 can resolve ableism. You were asking about whose responsibility it is, and I'm wondering if I can share my thoughts. Yeah, absolutely, go ahead. So I think as the commissioner mentioned, everyone does have important roles. But I think as with anyone who has been marginalized, I think the people who are not directly harmed by ableism do have a duty to educate themselves and not put that whole burden on the shoulders of folks with disabilities.

10:03 I think when we think about solutions to physical ableism and other systemic ableism, we need to make sure that we're relying on the experience of people with a variety of disabilities, physical, cognitive, visible, invisible, and also with intersecting identities, because so often in the human rights context, it feels like people are in silos. But I think we know, and the commissioner's office will know, that many people experience various barriers, disability and perhaps gender-related barriers.

10:33 cultural and racial related barriers as well. Organizations like ours have a, and even the commissioner's office, I think we have a role in bringing issues and solutions to the attention of decision makers and in educating the public. And governments have a responsibility to ensure that disabled people have accessible, meaningful ways to address discrimination when it arises.

10:58 Selena, I just wanted to echo much of what you said, but just to emphasize the two points which I think are so important. And I'm grateful that you raised that intersectionality point because I think it's absolutely key. And we didn't get deeply into it in our campaign in the interest of creating sort of a more simple way to engage on the issues or straightforward way to engage on the issues, but it couldn't be more important to.

11:27 undoing all forms of discrimination is to understand that these issues are multifaceted and that people experience these issues in different ways. So gender has a key role here, race and indigeneity, people with disabilities who, you know, women with disabilities face much higher rates of gender-based violence, for example. Indigenous women face higher rates, so Indigenous women with disabilities may face even higher rates.

11:55 So understanding those nuances are vital. So I appreciate that point. And I appreciate the flag as well about the level of responsibility to people who don't have disabilities to engage with these issues and the responsibility to educate ourselves. And I do wanna put as well an emphasis on what government's obligation is in this context. I do think our campaign here really highlights everyone's responsibilities, particularly those who...

12:23 who have power over spaces and systems, as employers, as housing providers and so on. But it is a key responsibility of government to take this form of discrimination just as seriously as the other forms of discrimination. This is in fact the area in which there are the most complaints around discrimination that go to the human rights tribunal. So it has particular poignancy or weight in the context of the human rights analysis.

12:53 Yeah, and it's interesting, I've been doing a bunch of podcasts lately around accessibility and ableism. And the interesting thing is, and you highlight some really, really key points at how complex this issue can actually be, and how many intersections there are. But even when it comes to simple accessibility, this is something that is largely going to affect almost everybody. These aren't necessarily going to be...

13:20 left to singular groups or anything, because as we all age we all have problems getting around. We've got to look at how we do things and how we design things and how we build things from a universal lens rather than just, oh we need some stairs here, throw in some stairs, let's do, we got to sort of open that mindset of humanity, from my point of view at least anyway.

13:47 Absolutely. And I think that's part of what we're trying to do with this campaign is shift the way that folks see the world around us. So again, particularly aimed at people who don't aren't experiencing disabilities or don't identify as somebody with a disability. It's not just taking steps ABC. It's actually learning to see the world a different way.

14:09 and to see the obstacles that we build in that we don't have to build in to our society and to our built environment. As an advocate and as a person with disabilities, I'd like to point out to you that people, it is very important to think of universal design in terms of the physical space, but I think that concept can be applied a lot more broadly to make events more accessible to, for example, people with sensory disabilities or...

14:36 information processing related disabilities. I think part of my interest in this campaign is also to, and my input into the campaign was also to remind people that disability is extremely broad. So we have people with intersections identities, but we also, disability itself is extremely broad. And often it's focused on the visible disability, but there are a lot of folks who are experiencing ableism whose disabilities are not as obvious.

15:07 Yeah, absolutely. And it's it's it's one of those things where, you know, we operate.

15:14 Jobs West, it's one of our social enterprise. It's an employment service for people with developmental disabilities. So what we do is we work with clients and we work with the employer so that the employer you know understands what the clients needs are and it just generates successful employment opportunities. And one of the big things, and you talk about you know creating an accessible environment, it's not just sort of physical, is that you know businesses tend to think that it costs a lot of money.

15:44 to do that, to adapt or to change things so that it becomes more universal. And the truth is it really doesn't. It doesn't cost anymore. And what we find with people who are neurodiverse and employed...

16:01 It's actually a benefit to the business' bottom line. There's better retention, there's longer employment. I mean, the list goes on. So I absolutely agree with that. Now we've been talking about government responsibility, and it seems like a lot of levels of government right now these days are creating new accessibility rules and laws. And BC has some new legislation. The city of Vancouver launched this year its first part of an accessibility plan. On the surface, this seems really good. I mean, I know governments want to do things

16:31 to look good and get re-elected, but are these steps in the right direction? Is it enough? I ask that to either of you.

16:40 Sorry, do you? No, go ahead. I will say as a person, both an advocate and a person with a disability, I mean, obviously, it's good to have accessibility legislation in place and I think there is some promising potential. However, I believe some of the...

17:08 the tools that are within that legislation may not even sort of be in place for up to 10 years from now. And the legislation doesn't apply to sort of every type of service or every situation a person with disabilities may encounter. And as it happens, I think we're still waiting for some rules around how the government expects the bodies that the legislation applies to.

17:32 to make things less ableist or less discriminatory. And so it seems like a really long process. And frankly, I'm not sure how much teeth there is in it, if that makes sense. And these are issues that our office is very interested in and because we provided feedback to government before, and my understanding is it was not applied. And there were other organizations as well. So is it a good thing?

18:02 Sure. Does it go far enough? Not for sure. Maybe towards a no, but I'm happy to hear from Kasari as well. Yeah, I mean, I think your summary there at the end of, is it a good thing? Yes. Does it go far enough? You know, probably not. I think the long timeline is important and some of the limitations of how the scope of the legislation that it doesn't

18:31 that the scope isn't broad enough yet and in hopes that we will get there. But I think the bread of systemic discrimination facing people with disabilities is not fully addressed here. And the sort of unwritten rule side of things and the way in which our societies are designed to be ableist and could be more designed with universal design, I think they're left off.

18:59 This is a bit more of the kind of maybe perhaps higher than just the lowest hanging fruit, but still in that realm of what's more doable for government to start out with. And I think there's there's definitely more to do on that front. Yeah, no, obviously, you're one of the when it comes to ableism.

19:18 poverty is a huge problem with the disability community, obviously because some of that means finding employment and keeping employment can be difficult and that it becomes ableist for organizations or businesses not to hire people with disabilities. Now the federal...

19:38 that new Canadian disability benefits. It went through a second reading the other day, and it's going through a vote today, as I'm understanding. But there's still lots more work to do in terms of getting that new benefit going. Is that a better step in the right direction? I mean, getting more benefits is obviously good for those who need it, but that doesn't really, to me, in my mind, sort of address

20:08 of that puts ableism in place to begin with. You're right. I think you're right about that. Also, I mean, any time there's a financial benefit, we have to ask ourselves, is everyone who might benefit from it actually getting it? Because I can't comment specifically on the disability benefit you just mentioned, but there are.

20:35 instances where folks who receive persons with disabilities assistance, for example, end up having to give up some income that they would otherwise be entitled to, such as those who have worked and gained EI. Right now, they have to give up their, like there's a call back. And so that's something that we are advocating against because it just reinforces the poverty of many folks with disabilities. And we have consulted with Kusari's office on that point.

21:03 which is great. So, sorry, did you have anything to add on this? Yeah, I mean, I was going to say that that we fully support the push to claw back the claw backs, if I can say it that way. Claw backs are a problematic piece of the picture where benefits are concerned. And, you know, so just talking about the benefits presents an incomplete picture of what the actual overall financial benefit is.

21:33 talking about income assistance of various kinds and benefits of various kinds is an important part of the conversation around poverty. I agree it doesn't change the system as a whole and it also doesn't address discrimination that flows on the basis of poverty. So another piece of the puzzle, definitely not a complete answer, but also a piece of the puzzle is to, is to, to prohibit discrimination on the basis of poverty.

21:59 because we know that people with disabilities, as we've just said, disproportionately live in poverty, as do many other marginalized groups, as do Indigenous people disproportionately live in poverty and so on. So part of our picture around systemic equality generally, and as it applies to people with disabilities, is to prevent discrimination on the basis of poverty or social condition like homelessness or appearance of homelessness. And yet that is not.

22:23 enshrined in law in BC. It is in some other jurisdictions, but our human rights code is silent on the issue of poverty. In fact, most of our domestic rights protections are silent. Anything that applies in BC is silent on the issue of poverty. So I think, you know, we've designed these tools to protect and promote human rights for those most marginalized among us, and yet...

22:47 we leave out this huge and important group of folks living in poverty and experiencing poverty for all the reasons that we've just talked about. And it's entirely legal to kick someone out of your store because they appear homeless or living in poverty. It's entirely legal to follow someone around a store for that reason, whereas it's not on the basis of race or disability. Directly,

23:11 But those things often become very difficult to prove. So we've been advocating for quite some time along, many in the community, to include that prohibition in the Human Rights Code. Now, Selena, I want to ask you a little bit more of a personal question. I mean, you'd feel free if you don't want to answer that at all. But what sort of ableism have you experienced in your past? Oh, sure. So for context's sake, I don't mind explaining that I have.

23:38 cerebral palsy and it affects mostly, at least externally, it affects my walking. So I use crutches and the ableism that I experience, unfortunately, at least on a monthly basis, is not more frequently. It can be experiences like I mentioned where I will go somewhere and decide not to go there because I can't even sit at the tables because you have to climb up onto a...

24:04 stool or in transit, although you're supposed to, you know, they're supposed to get close to the curb, they're supposed to lower the ramp. I often, you know, end up having to navigate huge gaps and drivers that are less than thrilled if I try to remind them that they're supposed to do that or, you know, I've had a driver yell at me when I asked to use the ramp because he said that it was only for people in wheelchairs.

24:32 And those are just a few examples. But there are also sort of everyday situations of what I would call microaggressions, where people, even if they don't mean to, they're causing grief. For example, I sometimes wish I could walk around with my resume taped to my head, because I've had people say to me, I'm so glad you got out today. It's almost like they wanna give me a sticker for tying my shoes. And so...

25:02 uh it's extremely frustrating and kind of demoralizing and sometimes it's i mean it it doesn't make you it makes me feel small and so even with my experience and my abilities um these kinds of things happen quite frequently um i've certainly experienced ableism oh um albeit um not

25:27 super overt, but ableism in the workplace scenario, not in my current position, but in others. So hopefully that answers your question. What that does say though, and what I hope to convey here is that ableism is so entrenched in our society that there are a lot of assumptions just on seeing someone with a pair of crutches, for example.

25:51 And frankly, my experience both personally and in encountering many people with disabilities is that we are incredibly resilient and incredibly adept. And frankly, with all of the ableism in society and the times that we are refused the ability to work or those sorts of things, we are losing a lot of productivity and creativity. Even if you want to look at sort of a bottom line scenario, we're losing so much just by excluding people with disabilities and other marginalized folks.

26:20 Yeah, absolutely. I mean, especially when it comes to the the neuro diverse community, experts will tell us that, you know, that's a huge untapped pool of employees and ready to go. And and to your comments about people saying, oh, I'm so glad you got out of the house. Do you do you subtly remind them that you're educated in law and you did everything? I don't have time to do that. They usually do this to me in the crosswalk. I said people follow me in the crosswalk while I'm trying to get out.

26:50 of traffic. So I'd like to, but I don't have time. Yeah, that must be very, very frustrating. It is. Thank you. So we've been talking a lot about poverty and how ableism, I think, contributes to that. I'm not sure if you'd like to discuss the topic I've made. That's something that's come up a lot. Concerns that some people feel like they don't have any other way out, except for...

27:20 ending their lives. To me this is concerning to say the least. Do you have something to think about that? It's heartbreaking and you know I'm sure my office will have its own comments so to speak but just working as an assistant for the law clinic I have actually heard from people who either feel like they don't have any other options or

27:50 in at least one case where they, you know, they don't have a lot of resources and they have complex health needs. And their doctor suggested it as an option without them having brought it up. And that person told me that.

28:06 that they felt horrible and that the trust was broken between them and their practitioner as a result. But hearing those things, those are, I can specifically think of like two or three people I've heard from, but I have a feeling it happens a lot more than that. And both from an advocacy perspective and as a person with a disability, it's horrifying and heartbreaking. I can't imagine even bringing that up to somebody as an option.

28:32 To me that's absolutely bizarre. Any comments from you, Kasari, on that? I won't comment on that because the jurisdiction of my office is provincial, so I'm not commenting on matters within the federal decision making realm. Okay, that's fair enough. Sorry. So how can, for both of you, how can organizations like DDA better address the needs of the disability community? Well, I think...

29:01 our office has found that collaborating with other organizations can be helpful because it can give you ideas of how you might resolve issues or how you might connect better with clients to figure out how to fix a problem. These are things that you, by the way, I assume that your office is already doing, but maybe just needs to do more of, I don't know. But using your relative power alone or in collaboration with others.

29:28 to ensure that the needs and goals of people with disabilities are heard and applied by decision makers. And then I would say educating families and caregivers and the general public about ableism and how they can make changes to address it. And most importantly, something that I think already happens, but get client feedback, not just from people in their lives, but also from people directly, because it's the only way you'll actually address any of these issues properly, I think.

29:58 And I think from my perspective, the question is really how we can support you to do, support community organizations working in the disability space to achieve their goals. So where we can provide some amplification for the policy or changes that may be afoot and may be asked for, that's a role that we can play as Luna discussed earlier in terms of benefits callbacks.

30:28 of amplify as I say or provide some kind of bridge. We occupy a somewhat unique space. We're not in the civil society non-profit realm. We're not within government. We're independent from government. So we can provide some more of that role and certainly what can help us in our work on ableism and has helped us immensely in this campaign.

30:51 is to be able to have those collaborations, to be able to build these relationships that we did with Disability Alliance and other organizations to provide us with just invaluable advice and guidance and direction as we developed this campaign so that we ensure that the work that we're doing on Ibalism is actually reflecting.

31:13 lived experience of folks in this community and service providers who see these issues every day and can reflect those experiences back to us. Now is that something the your office does often in terms of like collaboration with other organizations? We're working through we've my office has existed for just over three years and we've done uh worked through collaborations through all of our project work but in different ways and so we're still in that process of figuring out

31:41 Which of these models seems to be the most successful? Where are we being the most respectful of people's time and energy that are contributing to us, but also making that support as meaningful as possible so that we're able to reflect back what we hear. So yes, the short answer is we're doing these kinds of collaborations and community embedded work in every aspect of our work, but also learning as we go for sure and trying to incorporate those learnings into the next project we do.

32:09 Sounds good. Now, Selena, do you have anything else to add before we wrap things up in terms of your own experience and how we're addressing ableism here in BC? I think I would just say that I think it was a fantastic opportunity to be to be a part of this campaign, and I would like to see the Commissioner's office, you know.

32:35 similar campaigns perhaps around issues that relate in some way or are linked to ableism as well. I think anything that we can do on a larger scale to raise awareness of these things is important. I think that the collaboration we have been able to do with the commissioner's office and with other organizations around the province was very helpful.

33:01 I haven't, there was a question I think about how did you find the experience collaborating together and you know it was very enlightening and encouraging and we would like to see more. That sounds good. Kasari, anything else to add as a final thought? No, just just so thank you for for inviting us on today and the opportunity to speak about this campaign. Really grateful for that.

33:26 Yeah, I'll mention that again. I think that about covers it then. I'd like to thank Kasari Govindar, BC's Human Rights Commissioner, and Salina Dewar, an advocate with the Disability Alliance BC. Today we've been talking about ableism in BC and their new campaign called Rewriting the Rules. You can find out more at bchumanrights.ca. Thank you both for joining us today. Thank you so much. And I'm your host, Evan Kelly. Thanks for listening.

 

Accessibility affects many people, and even one day, perhaps yourself. In this Encouraging Abilities Podcast, we connected with Dr. Jaimie Borisoff who runs a development program at BCIT with an eye on designing better wheelchairs and other adaptive equipment that helps people stay included.

 

TRANSCRIPT

 

A Chat with Dr. Jaimie Borisoff: On the Forefront of Wheelchair Design

 

00:04 Welcome to another episode of our Encouraging Abilities podcast. I am your host, Evan Kelly, Communications Manager here at DDA. Now, over the past few episodes, we've been talking about accessibility, and not just for people with developmental disabilities, but for anyone really who needs adaptive technology or even big changes to the world around them. Now, the thing is that it's likely at some point going to include each and every one of us as we get older. So it's not just people who have been injured or people with developmental disabilities.

00:34 can affect us all. Now we've talked with accessibility authors, lawyers and design consultants and today we're talking with Dr. Jamie Borosoff. He directs research out at BCIT and UBC here in the Lower Mainland. Now he has one of those resumes and levels of education that are really off the charts. You got to listen to some of this. He's the former Canadian research chair, rehabilitation engineering design at BCIT, adjunct professor, Department of Occupational Science and

01:04 Director of Make Plus Applied Research Group. That's again a BCIT. He's got a PhD in neuroscience and a Bachelor of Science in engineering physics. I mean, it's just quite a list. So Dr. Borisov focuses his research on people with spinal cord injuries and other mobility issues. One focus of his work is on expanding people's ability to interact more fully with others, the environment and the world. In the long term, Dr. Borisov wants to merge current models

01:34 wheelchairs, for example, with newer technologies like robotics in order to increase the ways in which technology can improve the lives of people with spinal cord injuries. So thank you for joining us today, Doctor. Yeah, it's a pleasure, Evan. It's great to be here. So what got you interested in this kind of work and research?

01:54 I'll make no bones about it. This is a lot of this coming from my own personal experiences. I am a wheelchair user myself. I have a spinal cord injury from a car accident over 30 years ago. And really ever since that event, and kind of, I guess, due to the nature of

02:16 the way I think about things and, you know, being kind of an engineer at heart, I always started thinking about problem solving, various aspects of my life that were more difficult than it was before the injury. Now, were you an engineer first before your accident? No, I was in first year university actually, or just after that. So I was mulling over at that time, what exactly to do, what exactly to major in. And I had a few thoughts about that. And...

02:45 I did migrate towards engineering in the end, and that was the right decision. But I'd always been, you know, someone that tinkered and took things apart. I always took my bike apart or radios apart and that sort of thing as a kid. So it was kind of a natural place for me to go. So that was 30 years ago when you started your education. And, you know, obviously things have, you know, changed in that time. How much better, in terms of schools, in terms of students accessing schools, how much better has it gotten?

03:15 Great question. It's gotten a lot better in some ways. And in some ways actually we're a bit further behind. Let me explain what I mean by that. If we go back over 30 years ago.

03:30 This was shortly after Rick Hansen's Man in Motion tour and all the visibility and awareness he brought to spinal cord injury and wheelchair access and general accessibility and disability. Vancouver is also a relatively new city compared to older cities, say in Quebec or in Europe.

03:47 And so we were ahead of the game. That being said, I was a student at UBC. It's a big campus. It has a lot of old buildings. There was a lot of access challenges, a lot of service entrances, a lot of back doors, a lot of working with the registrar's office to move classes into accessible buildings, but they were accommodating and they got it done. Then around that time as well in the U.S.

04:12 As you're probably aware of, and your listeners are probably aware of, the American with Disabilities Act, the ADA was passed. And when I think about some of my travels around that time, you know, again, Vancouver was ahead of the game. But then over the next few decades, the US, almost everywhere in the US became accessible. If I think about going to a hotel in the United States,

04:39 every hot tub, every pool has a lift into it, for instance. Almost every building is accessible. And it got that way because of the ADA and the litigious nature of it and the teeth it had in it. And in terms of there's a lot of innocent bystanders along the way, but in the end, it created a pretty accessible society.

05:02 And so I think in that regard, we've been passed by actually in a lot of ways. And, you know, we can have a new, a new trust fund here in Vancouver, for instance, which again, should be way ahead of the game given everything we do and where we're coming from, and, you know, have a table that's accessible. I might have only high tables in it, for instance, which just strikes me as being bizarre how they can get like a license or a business license to do that. So.

05:26 We still have a ways to go. Yeah, I mean, when you talk about that, I was out recently with a friend of mine who does use a wheelchair. And we were at a local club, and he got in to do some photography in the front entrance, no problem. And we looked around out the back, and it's nothing but stairs. So it seems like there's places that need to be fixed or need to be addressed. Do you still see too much of that, in particular in Vancouver?

05:56 Yeah, a little bit too much of it. And you know, I'm being picky, I think, a little bit. Again, I think back 30 years ago, and I was going to go to a restaurant, I didn't know, I would phone ahead quite often and say, hey, are there going to be access issues? Are there stairs? Is there a bathroom? That sort of thing. So I never do that anymore. Occasionally it backfires. But it's pretty rare now. So certainly we've made some impressive strides. But now I think we're getting to the point

06:26 We want to get that last 10% basically and there's a lot of work to be done still to achieve that. Absolutely, no. Do you find the perspective of people with disabilities missing in the engineering field?

06:39 Yeah, if I think of the wheelchair companies I've interacted with over the years, and I know many of them now, I've interacted with many at trade shows and conferences, I've visited several of them, there's not many wheelchairs with disabilities in those offices. I was at a local wheelchair company about 15 years ago,

07:05 that wasn't accessible. Actually their office wasn't accessible so that that's kind of an interesting example. Can you tell me a little bit about the the the make plus let me just go back up to the make plus applied research group that you're out there UBC or sorry BCIT? Sure make plus is a group of researchers of 15 of us.

07:32 I direct that now. It's something that I recently took over. I'm proud to say that I recently had the opportunity to pick on. We have a mandate from BCIT and the province of BC to interact with local industries, local companies and also other academic groups, say at UBC or SFU, and we have collaborations actually across Canada for that matter. And we collaborate on applied research projects.

07:57 So we think about a company, a smaller company that perhaps doesn't have an R&D group. Maybe they don't have a group of engineers or perhaps specialized equipment or the resources to pull off some sort of R&D project. That's where we come in, we'll partner with them. We have an industrial designer so we can design and prototype pretty much anything.

08:20 Now how many of those type of projects get to the market? I'm just looking on the website right now, you've got this little doggie in his dog wheelchair. And some of that obviously has reached. So is the idea of this to put things into market? Absolutely, that's the goal. And given our focus with partnering with industry,

08:48 And we're talking about for-profit companies that have employees, they have revenue targets, they have profit aspirations, right? They are only doing their R&D projects to do for their business interests. And of course, many of them are doing things to make a difference in people's lives too. We do many medical device projects, for instance, in that regard. So, you know, we've had a lot of great success with, you know,

09:18 projects that have led directly to products that are in the market now. You were involved in developing the Elevation Wheelchair. Can you tell me about that?

09:29 Yeah, that's right. That's something I started doing actually in grad school before I came to BCIT, but it certainly overlapped with some of my BCIT work as well. And that was a project whereby I was dissatisfied with my current technology that I had available to me that I could purchase in the marketplace. I'm a manual wheelchair user. I didn't like necessarily what I was being offered.

09:58 to kind of satisfy what I wanted out of a manual wheelchair. Is it an electric wheel, like a wheelchair? Is it something that raises by itself or is it something that where, I mean, if your legs are the problem that you can like pump it up with your arms kind of thing? Yeah, more of the latter. So it's completely a manual wheelchair. And so let me tell you a little bit about the, sure, a bit of the motivation behind it.

10:24 As you listeners probably know, if you can think of a manual wheelchair, a person in the community in their manual wheelchair, it has a fixed seat. It's around a typical height of a chair in the community. You can get under tables. They're now the modern ones are very lightweight. They're easy to push, they're maneuverable. They work really well in those regards. But there's a couple of things that they don't do well.

10:52 And one of them is if you think about a sport wheelchair, for instance, this is a wheelchair that you might use for racing or in my case, I played wheelchair basketball. So I played for Team Canada. That's a whole other story, but I can tell you about that later. But in playing basketball at a high level, I would sit differently than I would every day. I was sitting much lower. I was in a better position to have good balance and to be able to exert force on my wheels, to go faster and these sort of things.

11:22 to push that chair than my daily chair. At the same time, when I was in grad school, I had to work at countertops in the lab. And so I had to get up higher. And I was fortunate enough to be able to use a standing wheelchair. This is a wheelchair that stands you completely upright. But those are big, they're bulky, they're cumbersome, they're not lightweight, you can't throw them in your car easy. And I also found that I wasn't standing usually at all. And I was using

11:52 I found very useful. And so my design goal and thought process was, what can I get the best of both worlds? Can I get up to countertop heights? Can I get up to partial standing?

12:00 And then can I get down into a low, aggressive wheeling position to wheel around the community a little easier. And that design thought process led to the elevation wheelchair, which is a ultra light wheelchair, it's lightweight, it pushes really well, but it lets you get into these two more extreme sitting positions. Now is that on the market today? It is, yeah, it's on the market. It's made by a group called PDG Mobility.

12:30 manufactured and distributed around the world. Do you own the patent to that? That's correct, yes. I have several patents for it that PDG now controls and I consult for them still and so that there's a bit of disclosure there as well that I do get paid for some of the sales of those chairs. Well I would hope so. Now that brings me to the next question, is that an expensive

13:00 It is an expensive chair. And unfortunately, anytime where you're doing something different, that's a bit out of the norm. That's kind of a bit different from a typical line item, so to speak, in a funding matrix, it is more expensive. And that's, you know, one of the challenges.

13:20 marketing something like this to the broader population in different jurisdictions in North America and around the world for that matter. And that's, you know, that seems to be one of the sticking points for the disability community is that people generally don't understand that there's all this added cost when you've got these disabilities. Absolutely, yeah, and I've, you know, being in

13:48 at academic institutions and speaking to engineers and students and many people, there's this kind of notion that a manual wheelchair is kind of like a bicycle and they're kind of both made out of tubular metal welded together, aluminum or steel or something like that and why are they, wheelchairs so expensive compared to you know a bike you can buy at Walmart or something like that and and that we probably don't have time to get into it but there's a lot of reasons

14:18 for that and it is a medical product. There's prescribers, there's funders, there's all sorts of, it's customized quite often, it's fitted to the person. There's all sorts of good reasons why it is more expensive and it's relatively low volume compared to a consumer product like a bike. You're exactly right, it is difficult for people that don't have good funding sources and good insurance plans and we think of Canada as being a fairly flat

14:48 people having access to the same things and well that's unfortunately not true. No it's not. In this regard it's really how you ended up with your disability and how that came to be and there are haves and have nots unfortunately in our industry. Yeah and it's you know that's obviously a huge concern so how do we make these kind of devices more affordable for everyone who needs it? Well we

15:15 We hopefully keep innovating and keep expanding and things hopefully get cheaper over time. And unfortunately, that hasn't happened with our chair. It hasn't, you know, never had got the volumes up where that happens. There's a lot of reasons for that, I think. But I think on the whole, these types of wheelchairs have gotten cheaper or I should say the quality has gone up.

15:42 And the price has stayed the same over the years, if I think back, you know, what I could get now compared to what I could have over 30 years ago. So that's certainly happened, quality's gone up. But yeah, the prices can get really difficult then. And now what we're seeing in the market, we're seeing carbon fiber and titanium and some more exotic materials being used, again, like the bike industry. And if you think about, you know, say a mountain bike, you can spend, you know, $900 on a mountain bike or you can spend $9,000 on a mountain bike.

16:12 Absolutely. Or more if you want. And so our industry is not dissimilar in that regard. You know, we've been talking about sort of that prevailing attitude in society. I mean, I think that people, sometimes people...

16:27 don't understand even the emotional connection for someone who uses a wheelchair. You may have seen in the news a lot lately about this young lady whose wheelchair was damaged and even lately lost by airlines. Do you see general attitudes and policies improving for people with limited mobility or is it still an uphill battle? Well that's an interesting question. I've been...

16:54 in that situation myself, I've had a chair damaged, I've had a chair lost temporarily only. I don't think I've ever had it more than a few hours or a day without it, but I do sympathize with that. It's a tricky problem and I understand why these things make the news when they happen. But I guess at the same time we

17:23 I do understand that this is something that is not as common as probably as we think it is in terms of, you know, people taking these high-end wheelchairs on planes. I'm sure it happens every day, but I'm sure not every airport and every airline deals with it every day. And it's unfortunate. And it...

17:43 it has, you know, what does it come down to? It probably comes down to training and awareness and understanding that again these things aren't a set of golf clubs that maybe a businessman is taking on a business trip, right? It's literally an extension of the person and exactly how do we how do we get that across, right? That these require more care and more attention and it's a tricky thing to navigate. Now are there any other newer designs or projects that

18:13 There are always interesting things we're working on. That's a short answer. I can speak about a couple in my own lab. You mentioned that I'm the former Canada Research Chair in Rehabilitation Engineering Design. I was doing that, or I became director at MC+, but I was doing it in parallel with that group and with many researchers in that group. And that work is still continuing. We're still going after federal funding to continue much of that work.

18:40 And we have two broad categories of research going on under that stream. And one of them is around wheelchairs and wheelchair mobility. We're getting really interested in electric assist. If you think about what we see locally now and certainly around the world about e-bikes, how that's exploding.

19:01 with bike paths and that sort of thing. We're seeing a lot of really cool products now coming into the manual wheelchair market. I'm not even talking about power wheelchairs, it's a whole other area that we could delve into, but in terms of manual wheelchairs, we're seeing about products that can be attached to manual wheelchairs or wheels that can be electric now, just like an e-bike.

19:23 and really seeing now this hybrid approach to to manning wheelchairs and we're doing a lot of work in that regard especially having a goal to get people into more inaccessible areas and by that I mean say off-road say trails think about our our parks and forests and beaches for instance and and and then whenever I talk about this with with other people they say what about the rest of

19:52 And we can all imagine how difficult snow is with wheelchairs. And I know it is, I'm being facetious, but we don't think about it quite as much here in the Lower Mainland, but in the rest of Canada and certainly the rest of BC for that matter, snow and wheelchairs do not mix well together. And so we have a lot of interest in how a power assist and different components attached into manual wheelchairs can help with that.

20:15 Well, that sounds really good. It's kind of a double-barreled question. Have you seen much change in the push for accessibility in your field in terms of education? And is there a growing student body in this area of research? Are you getting a lot of students wanting to get involved with accessible engineering or accessibility engineering? Yes, is the short answer we have. There's always been, I think, great interest

20:45 in this area, it's creative, people can really put their engineering hat on and think about their studies and really apply it. There's this very real notion of you're helping people directly if you can make a difference in that regard. Unfortunately, the other tale here, though, is that we are a relatively small industry, and so if we train

21:13 young students, engineers to be specifically specialized in say assistive technology or wheelchair design, they're going to have trouble finding jobs. There's only a handful of engineering jobs in wheelchair companies in Canada for instance. It's, I don't know what the number is, but it's probably under 50 Canada-wide, which is a relatively small number. Locally here, it's,

21:43 probably less than 10. And so how do you train a bunch of engineers to want to become better wheelchair designers and not have jobs for them to go to? That's I guess at the end of the day, it's still a niche market no matter what. In the end, exactly. It's still a relatively small market again, compared to broader consumer products, right? And so what we try to do is engage people in our work, our research, our projects, but hopefully they're getting a well-rounded kind of experience that they can apply to anything.

22:11 And so we do a lot of work around engaging the end user, for instance, when you have a student doing a project, they may have an idea about, hey, this would be a great feature on a manual wheelchair, for instance. But before we let them just go ahead and do that, we say, well, maybe you should ask a bunch of people in manual wheelchairs to see what they think first is.

22:32 So we kind of want to get away from the solution looking for a problem and focus on the problems people have and getting the engineers, the students to engage with them and understand the problem before they go out and try to make better solutions. That can be then applied to anything, any problem. Well, for sure. Now, we've been talking a lot about wheelchairs and obviously limited mobility with legs. Are you working on any projects that help the upper part of the body?

23:02 mobility? We don't do a lot directly in our lab but one area we do a lot, we are doing a lot of work and that touches on that and that's general exercise. We're doing quite a bit with adaptive exercise equipment.

23:17 If you go to a local gym and you're a wheelchair user, you'll find generally a lack of options about different machines you could use, different cardiovascular machines, like the lipic machines or exercise by treadmills and all the different options that people have.

23:36 So we did one recent project which is quite interesting. And this is a really fun with researchers from SFU, UBC and BCIT, where we made rowing machines, a couple of different types. There's a stand up rowing machine called a ski ergometer. And that's just your conventional rowing machine where you sit down on a small seat and use your legs and to row back and forth. Because these are common machines that we see all over the place, but they're not very friendly for realtor users.

24:06 And so we need a project with this group of collaborators to make it more wheelchair accessible so that you could just wheel up to a machine, not have to get off your chair to get into a, say, a small seat, but you could just wheel up to it, make a few adjustments to this support bracket that we have. It's almost like an amusement park where you hop into your amusement park seat, then you bring down a securement device on your lap, for instance, so you don't fall out. That's an analogy,

24:36 charred rowing but it gives you the support so you can come up easily and start rowing and getting a great cardiovascular workout really quickly. That sounds really cool. Yeah it is and we've actually have several of these machines out there in the community. There's about 14 or 15 sites across Canada that have these machines now. We call it the A-Row, the adaptive rowing machine and the AST, the adaptive skiing machine.

25:01 So, you know, your listeners can look for those. Absolutely. So just a couple more questions here for you. What are some of the biggest challenges you've had to face when it comes to this line of work and designing and getting stuff to the market? It's the last part of your question. It's like getting stuff to market. That's always the biggest challenge. And I'm not alone in that.

25:28 you can almost ask anybody that wants to make a better widget, make better assistive technology is easier to do than it is to deliver it into the community in a way that other people can get access to it. You said it a couple of times, I think, in this conversation about ultimately, this is a niche market that is sharing the case with assistive technology across the board. So there's not a whole lot of

25:58 coming from industry to create new products, new innovation. We're not the tech industry in Silicon Valley, for instance, that would be the gold standard, I guess, about innovation and how to get things to market. We have hundreds of users, dozens of users, or hundreds of users, occasionally thousands of users for certain devices only, depending on the device.

26:26 That is always the trick and we are always struggling with how to do that more effectively. And how can organizations like DDA better serve the disability community from your perspective? I think things like you're doing right now, Evan, awareness and education. I think about the one great example I've been involved with for a long time now, this elevation wheelchair, which was developed locally here in the lower mainland. I will still all meet people.

26:56 in my own community that have never seen this chair, that have maybe purchased two wheelchairs in 10 years and have never been shown it by a therapist or by a dealer. And I understand that they've been shown it, they tried it, they want it, and it wasn't right for them. They didn't feel it was right for them, but sometimes it's just getting that knowledge and that awareness of options and what types of products are out there. It's...

27:25 it's again easier said than done. And so that's always been a challenge. It's a challenge in sports as well, I think. I've been involved with wheelchair basketball for, you know, for over 30 years. And again, there's people that have been in chairs that have been active that don't know about the opportunities that you can have in adaptive sport, for instance, in all the different programs. And it's just, you know, getting that message across as well as possible is at least

27:54 I guess the low hanging fruit that we can all do a better job of. Absolutely. Well, I think that about wraps it up for another edition of DDA's Encouraging Abilities podcast. Our guest today has been Dr. Jamie Borosoff, director of MAKE+, British Columbia Institute of Technology. We've been chatting about technology to help create a more accessible world for people with spinal cord injuries. Thanks for joining us today, Dr. Borosoff. Thanks, Evan. It was a pleasure talking to you.

 

Accessibility should not be an afterthought. Buildings and spaces should not be designed for people with no disabilities only. Because, as Karin Pasqua of Meaningful Access Consultants says, we are all going to be affected at some point in our lives by accessibility issues. With that in mind, we need to look at design as universal before shovels hit the dirt.

 

TRANSCRIPT

 

Transforming the World One Building at a Time with Karin Pasqua

 

00:05 Thanks again. It's time for DDA's encouraging abilities podcast. I'm your host, Evan Kelly, the communications manager here at Developmental Disabilities Association. Today we're talking about universal design and accessibility.

00:18 find this topic quite interesting as a person who does not identify with having a disability, I find that after working at DDA for a few years that the way I look at things, at least from a physical point of view, is shifting. Noticing things that need changing or wondering how someone with limited mobility can navigate something to how a door handle is designed that can be very limiting. It's been eye opening for me to say the least. Joining me today is Karen Pasqua, Universal to Design and Accessibility Consultant with Meaningful

00:48 access consultants based here in the Lower Mainland. Now Karen is an RHFAC professional and accessibility and universal design consultant with a passion for beautiful functional design. She's got a deep understanding that spaces and events in our communities should be enjoyed by everyone of all abilities. And she has expertise in working with municipalities and community spaces. She likes to say that she's part engineer, part occupational therapist. She has a natural affinity for adapting

01:18 environment and turning what some see as complex access problems into thoughtful barrier-free solutions. So thanks for joining us today, Karen. Thank you. Thank you for welcoming me onto your show today. My pleasure. So what got you into this line of work? It seems really quite interesting. That's that's quite the question. My background is very diverse. I will say that as from the

01:48 that I wanted to help people with disabilities. And back then, as a child, you perceived the world in a more limited way, perhaps. And in my mind, I thought I wanted to be a pediatrician. But organic chemistry is not my friend. So that led me down a little bit of a different path. And I'm so glad that that's the case. So my background is a smattering of working in

02:16 In university, I used to work at a camp for adults and children with disabilities. And it just became such an incredible love. And I love to like figure out the environment and how could we make the camp even more inclusive for everybody. And I went on to take courses in communication disabilities. And I worked as a speech and language assistant at a Center for Child Development for quite some time.

02:45 organizations to raise money for people with disabilities. I've worked at all sorts of different organizations and then eventually I ended up at the city of Surrey as the accessibility and universal design specialist. And from that, that just really reinforced where my passion lied and I took more and more courses and eventually decided to go out on my own because my passion is really to make

03:13 more and more of the world more inclusive for all of us. So I guess that's the cold note of how I got here. I think we need a lot more people like you. So I guess in terms of the city of Surrey, just to you know.

03:26 talking about that, it's one of the fastest growing cities in Canada. That must have been a lot of opportunity in terms of being involved in the growth and the change in accessibility in that town. Oh absolutely and I'm so proud of the work that we did and I still get to work with the city now sort of in a different capacity and just to be able to bring in facilities that

03:51 meet the needs of our community and just ensure that nobody's left behind. Because let's be honest, right, we all want to be involved. We all want to go to a rec center and to be able to work with architects and developers to ensure that the new spaces would be welcoming and retrofitting old facilities to to increase accessibility. And, you know, it's always a bit of a moving target. But, you know, when we find a grant and we can put in an automatic door opener, fantastic.

04:21 you know, that's a step, you know, check that one off the list. But it's been incredible. Give me some great insights into not just recreation, but our bylaws and making sure that, you know, let's say there's enough parking available for people to even get in the door or our cultural sites, you know. It's not just about being able to go to a community center, but we all want to go to museums and participate in theater and shows.

04:49 the whole gambit. So it was the most incredible experience. And just also, you know, I have to say the best part of that experience was actually shifting people's mindsets.

05:02 that is probably my favorite thing. That's part of my job. Yeah, that would, I mean, when I sort of look at this, to me there's kind of two sides. We were talking about accessibility and often that means, like you said, going back and retrofitting something and changing something that was already built for typically developed people or people who don't have spinal injuries or something. And now what it seems, what I'm seeing at least from my vantage point here at

05:32 to change that perspective. We need to look at things, not really, not necessarily, oh how can we make this better or how can we change this, but looking at it from a universal perspective from the very beginning. Yes. And I think that's where the mindset is what you mean. Absolutely, the mindset and also just this idea that

05:57 Often we find there's this barrier where people say, oh, but people with disabilities don't come into our program or into our space. And my thought is always, first of all, that's incorrect. And if that is correct, then there's a reason why. Maybe they don't feel welcome. Maybe they aren't able to come in. Maybe they don't know that they're welcome. Maybe they don't know that you have facilities that meet their needs.

06:26 You know, I ran into that very, very recently with a friend of mine who uses a wheelchair, and we were at a club in Vancouver. It's sort of an older club, I guess, but he had no problem coming in the front door, and he was doing some photography there and stuff, and we just sort of looked to the back, and the only way out in the back involved stairs.

06:49 Yeah. You know, and it's like, and he just looks at me, he's like, how simple would it be to put a ramp in here? You know, and just, but just the fact that there's, you know, probably that and so many other businesses, even just in the lower mainland that haven't taken these things into consideration. Yeah. Or, or they think of a ramp, but they don't think of a place to sit. You know, like you can get in the building, but great. Can you have a beer?

07:16 Can you pull up to a table with your friend? Exactly. Can you use the washroom? Yeah. And I have to say for the staff, they were actually quite nice and they offered them and set up a lower table so he could put his drink down and his camera gear and stuff like that. I mean, people are, you know, taking this stuff into consideration, but it's just, it's these older, maybe it's these older buildings and, you know, it wouldn't take a lot of money to put a ramp in, let's be honest.

07:41 Now, as a consultant, where does your involvement in accessible design begin and where does it end? Oh, that's a great question. It honestly depends on the project and the organization. So for many of our clients, they might hire us, we'll do a walkthrough of their existing site, we create a report that outlines everything they've done well.

08:09 and then gives them some tips as to how to improve accessibility. And that's not just for somebody using a mobility device, but also someone who is hearing, a part of the hard of hearing or deaf or has low vision, is blind. We also take into account cognitive disabilities and neurodiversity. So we often like to work with our partners, give them some information, and then help them perhaps find grants or...

08:37 come up with creative solutions within their budget to make their spaces more accessible. That's kind of the majority of what we do. My favorite though is when a developer or a city, architect firm asks us to join them in the process from the moment of the design starting. And that is the best thing in the entire world because right from before even a shovel hits the ground,

09:05 we can make sure that that future facility is welcoming to everybody in the community, whether it's somebody with a disability, whether it's an elder, a senior. Often our seniors don't identify as having a disability, but they have the same needs. You know, we just kind of like to start right from before construction even starts to kind of help that new building be most inclusive.

09:30 The other thing we really enjoy doing is for places that are already pretty accessible, we like to help them with their human resource strategies. So making sure that someone with a disability can be hired and work there and have some really wonderful, gainful employment and work the job of their dreams, you know? So we kind of meet people where they're at and help them move along the journey, if that makes sense. Absolutely.

09:59 Now, can you give me an example of a recent project where you got in before shovels hit the ground? Absolutely, yeah, for sure. One of the projects we're currently working on is the official community plan. There's a redevelopment happening in Port Moody. There's a huge piece of land that is...

10:26 being rezoned and going to be some new towers, some townhouses, a mix of residential and commercial. And the developers on that project have brought us in. The city has actually requested that they have an accessibility consultant on their team. So we're actually helping them navigate a very complex piece of land. So even though it won't be completed for probably another 10 years.

10:55 At least the designs now are already planning ahead. You know, like the boardwalks are going to be accessible. There's elevators that perhaps wouldn't have originally been implemented. We're integrating the community with the SkyTrain to make sure that that walk or wheel isn't too arduous to get onto the SkyTrain and get into Vancouver.

11:23 So that's a project we're really excited about. And there's been some facilities in Surrey, some of our new rec centers as well, that we've had those conversations with before those shovels hit the ground. And I'm so, so proud because those facilities, you walk in, you don't even realize they're accessible. They're so well designed that you just feel welcome. And you just feel included. And isn't that the point?

11:51 That really is the point. Now, do you find it, you know, obviously there might be a cost added to making things more accessible. Do you find though, like if you get in at the ground up, that that cost is easily included on something that where you wouldn't really be a part of? Or do you get some pushback from businesses or clients that say, no, we can't do that because there's an added cost to it and we've got to stay on budget or anything like that?

12:19 Yeah, budget's always one of those tricky conversations. But I can tell you, so there was a research paper done by the architect group at HCMA, and they determined that to build to a Rick Hansen Foundation gold-certified standard, the additional cost at construction is about 1%, which really is nothing.

12:44 to actually build a facility that includes everybody. When we're retrofitting, that's when the costs increase considerably. But the thing we tell most people is the cost, you think it's going to be far more expensive than it actually is. To have an employee with a disability, the accommodations are on average $500.

13:07 That's really not much, especially when we're making lots of money, right? And then the wonderful thing is that the conversation now is more about the business case. People with disabilities have money that they want to spend, right? We want to go out and enjoy ourselves too. So when you make a building more inclusive, then you're actually allowing people to come in and spend money with you.

13:32 Yeah, absolutely. You're actually kind of net positive. Yeah, absolutely. That's a really good point. And it seems to me like even just from a brand management perspective, creating something or making something better just helps your business. It does. That's a really great point. And I don't know about you, but I like to shop in places that reflect my value.

13:54 you know, and or where I see people like myself or like my friends being represented in their staff. So when I know that a company or an organization wants to include people with disabilities, chances are they're going to get more of my money. Well, exactly. So that said, what what do you see as any major obstacles to that universal design philosophy?

14:21 I think the biggest obstacle still is those attitudinal barriers that we're still facing, the perception. The idea that accessibility is ugly or medical or somehow diminishes or takes away from the aesthetic, whereas I would argue that it can be done so beautifully and so thoughtfully that making an inclusive and universally designed space or product.

14:50 It actually could be more beautiful, more functional, more create more space for some creative thinking. You know, let's not do things the way we've always done. Do it differently, maybe a little bit better. Who knows? A lot of it better. So a lot of a lot needs to be better. Tell me a little bit about the Rick Hansen Foundation, the training that you received there. And how does one get a gold designation?

15:20 Okay, two great questions there. So the training is available. They have some partnerships through a few different colleges. And there are some prerequisites to take the training, but if you've got a bit of a background in design, architecture, construction, they'll welcome you into the program. And I do, and I think they have a new program that's sort of like an intro.

15:46 an overview that is welcome to everyone to take and I highly recommend that anybody who's interested take that course. And in terms of getting gold, that is a bit of a process. So what, there's the minimum requirements, so some of the minimum requirements are, like all of the entrances must be accessible.

16:09 You know, so all main entrances need to be welcoming to everybody. Visual fire alarms are needed throughout the facility. All of the areas that someone would need to use, washrooms, kitchens, office spaces, whatnot, those all need to be accessible. So you can't have a building where, you know, 70% of the features are available and then, you know, 30% are on a...

16:37 on a floor that's not accessible by an elevator, for instance. And then there's a whole bunch of criteria. So we do a walkthrough, we have a whole long list, and then that goes through an adjudication process. And basically, if you're able to meet those minimum criteria and hit about 80% of the rest of our scorecard, that is the criteria for gold. And that is taking into account people of all sorts of...

17:06 abilities and disabilities, vision, hearing, mobility, cognitive. And it also just includes elements like signage and wayfinding so that when you walk into a space, you can find where you're going really easily and you don't have that sense of anxiety and being overwhelmed. Yes, we all need that, don't we? Oh, goodness, do I ever too. I'm directionally challenged.

17:34 Right? Like, give me a sign. If I'm running late, I just need to know where I'm going. Now, so those those sort of benchmarks or designations, does that all come from the Rick Hansen Foundation? Are they the ones that set up those benchmarks? They did. I mean, they've done it in collaboration with other organizations. So they kind of took the lead. They were the experts, especially from like a mobility disability perspective. But.

18:00 As you, I'm sure you know, you know, the community feels very strongly, nothing about us without us, right? We want our own personal experiences to be reflected in best practices. So they've worked really closely with other organizations like the Canadian National Institute for the Blind. They work with the Wavefront Center that supports individuals who are deaf and hard of hearing and a whole host of other

18:28 organizations including the Canadian Standards Association. So it's become a very well-built machine, shall we say, that really is constantly being upgraded. We're constantly listening to what other organizations and individuals with lived experience are expressing and making those standards even higher.

18:52 Now, we talked about money for a bit, but obviously some businesses will feel that funding can be an obstacle, but the governments like provincial and federal making grants available. Can you describe the process for businesses to secure funding for accessibility renovations? Yeah, that's a big one. And grants are, it's unfortunate that...

19:16 there aren't that many grants available. There is the Enabling Accessibility Fund, which opens annually for people to apply and have some of those larger renovations covered, maybe installing automatic access doors, ramps, elevators, visual fire alarms, those like really big expensive pieces. Where, what I like to do is kind of encourage people to get creative.

19:43 So I imagine that there is going to be more funding available as the legislation requires it. So I'm not sure if you're aware, but the provincial and the federal governments are currently working on standards. So we're looking towards much like Ontario has. So Ontario has the Ontarians with Disabilities Act that has requirements, whereas BC does not yet, but it is currently being created.

20:13 With that legislation, I imagine more funding will be available. But in the meantime, get creative, right? So we can, we can look for, I often encourage people to look for things like beautification grants or cultural grants, grants that support folks in isolation or seniors. These are all sort of really creative elements of looking at funding, especially for not-for-profit organizations or small businesses.

20:42 If you look at accessibility through the lens of ensuring that we're all welcome, that means that other marginalized groups or seniors or, like I said, those experiencing isolation, you can kind of utilize some of those grants to help everybody get in the door.

21:01 Absolutely. Now how would you, I mean you just lighted on BC's approach to accessibility and that there's sort of, you know, there's the new provincial laws that are coming down. I know the city of Vancouver is putting in a new accessibility plan. Overall is our local approach to accessibility, how's it doing? Is it good, is it bad, are we getting better?

21:31 Oh, at the same time? You covered it. We're improving, but in many places it's very good and it's better than other places. I come from Montreal. Vancouver is much more accessible than Montreal. There's a lot more historical buildings and the historic society.

21:59 be accessibility legislation. So I guess, yeah, it's good, it's bad, and it's improving simultaneously. No, imagine you have... That's good. I guess, I guess, heritage buildings would be, like you just sort of mentioned, in Montreal. How much of that is an issue? Have you run into that problem? Yes, it is. It's less of an issue here. We're just kind of a newer city.

22:28 on the whole. But it is, it's one of those things where you have to try to manage both sides because there is something really, really important to our heritage and ensuring that pieces of history are maintained and loved by people now and in the future. But at the same time, they need to be able to do them, access them. One of the most recent examples I can think of is we were working with

22:57 the City of Surrey's museum. So the Museum of Surrey has a historic schoolhouse that was brought onto the property. And we had some good conversations as to how to make it accessible. And ensuring that we kept front of the building as it was original, we were able to kind of come to a middle ground and bring a ramp.

23:25 up to the side of the building so that, you know, from looking at the building on from the exterior, you're still experiencing a historic building. But just on the side that entrance, we made sure that everybody can get in. This is definitely a bit of a pinch point, you know, you have people with two different passions kind of coming together and wanting to find a collaborative point. But it's doable. And at the end of the day, I know,

23:54 My husband Marco and I, we work quite closely together and he often talks about this one conversation he had at some point where this was exactly what was happening, the intersection of history and accessibility and somebody in this particular building was saying, no, but we can't replace the doorknobs, they're historic, they've always been there, but a lever handle is more accessible and it's safer during an emergency.

24:23 And the conversation we had was, okay, well, if the doorknobs are so important, like can we put them on a display case somewhere? We don't need to get rid of them, but we do need to make the space more inclusive. And part of that is actually replacing the doorknobs. But if the doorknobs are really important, like build a display case for them. Yeah. There's a middle, there's always a middle ground, right? It has to be. Totally. Sort of makes me wonder though, like.

24:47 Who are the ones to put the pressure on businesses to make change? Because the sense that I get is that people with disabilities sort of get tired of raising the alarm about something. So do you find it's the people with disabilities who are putting the pressure more or are businesses sort of starting to wake up a little bit and starting it from the beginning?

25:15 Hmm, that's a really good question. Um, I think it's a little bit of both. In essence, the disability community has been advocating since what seems like the dawn of time to just simply be included and to be thought of. But sometimes that advocating kind of rubs people the wrong way.

25:41 and when it gets really loud and angry, it kind of works against us. But it seems as though there does seem to be this tide that's turning and this change that's happening in the world that I don't know, perhaps, adjacent or perhaps thanks to other social movements that have happened in the last several years, that there's maybe that's been helpful. I know

26:10 This sounds a little bit strange, but my husband has a visible disability. He uses a wheelchair. I do not have a visible disability. I'm an ambulatory person. I do have a hidden disability, so my auditory processing is my area of challenge, but you can't tell, you can't see. What's interesting is that Marco can have a conversation with somebody, and I can have the same conversation with that person.

26:39 it's heard better from him because he's the person with the lived experience. And sometimes it's heard better from me because people, um, because I don't have a physical disability that I'm kind of almost expressing it as a peer in some respects. It's kind of hard to explain, but it's quite interesting how the information can be taken differently. Just...

27:06 from the perspective of someone with a visible disability versus someone who doesn't have a visible disability. So, and I think your question that I think my answer to your question is kind of coming from both areas. And then on top of that, you know, we're starting to talk a lot more about aging in place and our seniors and wanting to support our seniors. So well, we know that when.

27:35 the environment is accessible for seniors, it becomes accessible for everybody. Yeah, I think, yeah, it's a little bit of all of the above and perhaps just some good timing.

27:46 on top of that? I don't know. Well, that's good. That feels like then there's that shift going on. It's not just people with disabilities, you know, raising the alarms and that the society in general, at least Canadian society, is starting to listen. And that's really good. I've got one question for you left. Imagine if you had unlimited resources and approval, what's one thing you would make, one change you'd make to all public buildings?

28:15 One change I would make to all public buildings, I would ensure that every single public building is welcoming to people of all abilities. But if I have to narrow it down to one specific thing, I would have to say every public building has a really inclusive washroom and ideally an adult-size changing table.

28:43 And in that way, everyone has the ability to have dignity in all of their human processes. Well said. Of course, these are things that people just usually don't think about, you know, and that's the whole idea behind this, I think, is that universal lens that you've got to think about everything. Yeah. It sounds arduous, but it isn't.

29:07 Once you get into that mindset and that sort of lifestyle, if you will, it just becomes, you know, sort of normal, I guess. Totally. Totally. And it's funny, once you start seeing things, you can't not see them anymore. Yeah. Like, that's how I just view the world now. Is it, does it meet the needs of my friends and colleagues and those I haven't met yet, or does it not? Yeah, well, exactly.

29:32 Well, Karen, I think that about wraps it up for this edition of our encouraging abilities podcast. Our guest today has been Karen Pasqua. She's part owner of Meaningful Access Consulting along with her husband. She works with developers, city planners and more to improve and create accessibility for everyone. And we need more of her. So thank you very much for joining us today. Well, thank you for this wonderful conversation. Thanks for tuning in. We'll see you next time.

 

The Developmental Disabilities Association's Executive Director Alanna Hendren talks about the association's 70th anniversary, where the organization has been, and where it's headed in the 21st century. A staunch advocate for people with developmental disabilities, Alanna Hendren has been involved in this sector for over 40 years.

 

TRANSCRIPT

70 Years of Doing the Impossible

 

00:05 Hello again, welcome to another episode of DDA's Encouraging Abilities podcast. I am your host, DDA's Communications Manager, Evan Kelly. Now this is a special podcast because we are focusing on Developmental Disabilities Association's 70th Anniversary.

00:20 So for 70 years, and from a very humble start, DDA has been advocating, supporting, and transforming the lives of people with developmental disabilities. So since 1952 to 2022, I should say, we in the organization's pioneers have been moving mountains, transforming the social and political landscape for some of society's most vulnerable people here in BC and even across Canada. I'll try to offer the abridged version to listeners. Now DDA began when a woman by the name of B. Purdy

00:50 B birth to a boy who had Down syndrome in the late 30s. Conventional wisdom of the time would be to have him live his life in an institution. So B pretty went against that thinking and kept him at home in the community where he belonged. She would gather about a dozen other families and start educating their children in a church basement here in Vancouver. Now through lobbying the provincial government they gained funding to open the first publicly funded special needs school in Canada. That was just one of many innovations.

01:20 big fast forward to here in 2022 where DDA has over 500 staff and supports about 2,000 people and their families every year. We have numerous programs from early intervention and infant development to robust employment programs and many fun and educational programs for families in Richmond and Vancouver. So joining me today is our very own executive director Alana Hendron. Alana has been a leader of the developmental disabilities field for over

01:50 She received commendations for her contributions to the downsizing of institutions in BC by developing community services and promoting inclusion. As Executive Director of DDA for the last 25 years, she has worked with board members and staff teams to build a strong financial foundation and innovative quality support for individuals with developmental disabilities and their families.

02:16 So thank you for joining us. Now 70 years, what do you think about when you hear that number? Well, I think 70 years is just fantastic. And certainly the progress that we've seen over that 70 years has been phenomenal. Our goal is to continue to drive it forward and continue to advocate for inclusion for everybody, not just people with developmental disabilities, but everybody.

02:45 uh... because we know that in the in an inclusive world everybody wins you've been in this uh... field for forty years what made you decide to get into this line of work well i always had this drive to help people and i wish i had a drive to make money or do other things but i always wanted to help people so when i finished university i got a degree in psychology

03:11 and realized that a lot of people didn't want my help. There's a lot of people who have a lot of problems, but they don't really care. So I worked with people who had substance abuse disorders before I worked at Pearson Hospital. And when I worked at Pearson Hospital, what I found was that the folks who lived there loved attention, they really appreciated any help.

03:40 Sometimes they appreciated somebody just saying good morning to them. So I realized that people with disabilities were a group that were in the position they were in through no fault of their own. There certainly was not a choice. And they really wanted to develop and learn and participate in the community in a way that my skills could be beneficial.

04:10 And so, how did you get involved with DDA then? Well, I've known about DDA, of course, since I entered the field, because it was the first agency in all of Vancouver. When I worked at the Sammy Imelho Society, of course, DDA was a leading, it had developed so many new innovative projects, that it was an organization that people wanted to be a part of.

04:38 At Sam Yamu House, it was a smaller organization in White Rocks House, Surrey. It was a great place to work. I loved the people, but I was looking for a bigger challenge. So that's when I came to DDA. And during my time at Sam Yamu House, I was involved in supporting B. Purdy's son. So having been involved working with Bob,

05:04 I had a chance to meet B. Purdy and had done a little history of Samy Amuha Society, so I spent a lot of time with her talking about how the association started, what some of their challenges were, how she overcame them, and what she thought about the whole sector developing around her original ideas. Yeah, now she, of course, as we mentioned, is DDA's founder. What was she like as a person?

05:33 She was a very formidable woman. If she wanted something, she would go out and get it. And if she was not pleased with the service that she was receiving for her son, she would more than let you know it and offer solutions, which a lot of times people complain, but they don't offer you the solutions, whereas as Bea did. And she had a great deal of love for her son, Ba, who had Down syndrome and was a real character.

06:03 And the problem was I spent time at her house and she had this picture of Bob when he was a child with his brother John. So when I finally met brother John I was shocked that he was a senior citizen.

06:20 and we lost Bobby.

06:22 I think he was about in his 50s. Yes, he was. He was playing baseball and was running around after hitting a home run, and he had a heart attack, unfortunately. But he was always very happy that he died doing something that he really enjoyed. Yeah, that's, I mean, you know, his brother John has told me that story as well. It's, I mean, it's hard, almost hard not to smile at that. Yeah, yeah. Getting hit in the head, running around second, and having a heart attack. But that was the kind of guy Bob was.

06:52 be very lucky. I mean all sorts of people loved him. He was very friendly, he had a great sense of humor, and had been offered the best that life had to offer at the time that he was around. So what was DDA like when you started here?

07:13 Well, when I started, the association had a lot of financial problems. So that was the biggest challenge, sort of right off the bat. Then there were other problems, like the computer systems weren't very well developed. There were a lot of...

07:34 problems. But when I first came, you know, the number one challenge was balancing our budget, getting out of a deficit. We were in a negative equity situation, so that could not be sustained. We had lots of great staff, but they weren't organized in a very systematic way, so policies tended to be different depending on what department you might be in or whatever. So it was

08:03 The main goal was to make some money and bring everybody in DDA together so that we were all sort of rowing in the same direction and not at cross purposes. Sort of streamline the process and kind of make it better. And was that just your vision that you brought to the organization? No I think it was my assessment of what needed to be done and certainly the board was very keen to you know to get over our financial problems.

08:32 And so what changes have you managed to bring to DDA that sort of stand out for you? Well, the first change had to be cultural because DDA had endured a strike. And during this strike there was a huge amount of resentment between the bargaining unit staff, which was the majority of our staff, and head office. So there was this really negative perception of head office. And in many ways it was well earned.

08:58 There was not a lot of consistent policy, as I say. There were a lot of the human resource practices were certainly not best practices. And we had people who worked in child care that didn't even know residential existed, and people in vocational services that sort of did whatever they wanted instead of things that were productive for each client. So there were a lot of outstanding HR issues to deal with as well.

09:28 How do you measure success in your position? Was that where the board members guided? Or do you sort of?

09:39 look at yourself and go, okay, this is successful, this isn't. How do you measure it? Well, most executive directors or CEOs are measured by their financial success. So on that measurement, we've been extremely successful because we had one thing we don't talk a lot about now is our business, which was our partnership with Value Village and all the clothes that we picked up and sold. It turned out that the business had a lot of potential.

10:09 when I first came to DDA is that there was just so much potential. It just had sort of crumbled over the last previous, say, decade. You want to look at the financial stability of the organization and the success. You want to look at employee satisfaction, client satisfaction for sure. And when I first arrived, there were a lot of families that were extremely dissatisfied with the services they were getting.

10:37 to the point that we had regular town halls and got yelled at a lot. And a lot of the families were quite correct.

10:45 So the first thing we had to focus on is how do you turn a culture around to start refocusing on the people that we support instead of themselves or what's going on in the sector or what families want or the million and one other things that come up. So one of the things that we did was come up with Alchemist, which was a way to plan

11:15 plans for each individual client. So one thing we knew we wanted to do was not to babysit people but to actually figure out what their goals were and what were their dreams and their wishes. So in doing that, we actually ended up re-viewing all of our vocational sites and we ended up moving them all in a very short period of time.

11:41 There was also legislation that passed that was coming into effect that said anything that looked like work was work and everybody who did work needed to be paid minimum wage. So there were a lot of clients who were making a dollar, two dollars a day under the old sheltered workshop system and that was deemed exploitive, which clearly it was, although it was considered an activity kind of program.

12:07 So what we did is we ended up interviewing every one of our individuals that we served in day programs and their families and developed a plan in terms of what they wanted to do. The majority did not want to sit in a sheltered workshop.

12:25 There were people who wanted to do a lot more recreation, a lot more education, a lot more community awareness and community involvement. People wanted to volunteer, people wanted to work. We already had a great program going with Jobs West in terms of employment, so we supported that.

12:44 And there were people who still wanted a sheltered environment because they had worked in that environment for all their lives and felt that that was the perfect place for them. They had tried working in the community, didn't like it, and just felt that they needed that extra support. So we figured out a way to pay the minimum wage when we started Star Wars, which we consider sort of a little business within DDA. But.

13:09 The goal of the business was not to make money, it was to employ people. And we're very, very happy that we've been able to employ hundreds of people at Star Works and help some of them move on to paid employment outside of the sheltered environment. It generates revenue, nearly a quarter of a million. Yeah. More than a quarter of a million this year. Yeah, so that just lets us hire more people. Yeah, and that's just one of the big things where DDA has been an innovator. So what are some other ways

13:39 over the past seven years where DDA really has sort of raised that bar of innovation? Well I think Alchemist was an innovation because it used computers to help us determine how many hours of support everybody needed in order for their wishes and goals to materialize. So that helped focus everybody on clients. It helped focus people on the...

14:05 people we support as developing human beings instead of people who are just in need of basic care. It really allowed families to get involved in the planning, which they hadn't necessarily been before. So that was the big thing, was focusing everybody on each individual and what they wanted.

14:28 The other thing that needed to be supported, of course, is the staff, because they're not going to be too keen about supporting individuals if they themselves feel that they're not valued. And certainly the wages that we've paid over the years have shown a lot of people who work in this sector that they weren't as valued as they should be, and I totally agree with them.

14:51 So one thing I've spent most of my life doing is lobbying for higher wages for the staff who work for us because people think anybody can do it and they can't. It's a hard job. It requires talent. It requires creativity. It requires in some cases a lot of thinking about how to approach people based on their

15:21 It takes education and it takes a lot of stamina in some cases. So I think our staff deserve a lot more. They're in bargaining right now and I hope they got what they asked for.

15:35 Now in terms of other innovations, I know DDA because while I work here, infant development was something that was, I mean, was DDA one of the premier organizations to realize that early intervention could make a difference? DDA was one of the few organizations in the world that realized that infants needed extra support.

15:59 right from the get-go, that you have to work with what you've got and work with families so that they could support their child in a way that was going to maximize that child's development. And at the time, the people had no idea how successful it would be. In those days, we didn't know that those were actually the most important years for brain development. So I look at kids today.

16:29 and by kids I mean young adults, and it's a completely different story than it was when I first started. When I first started, people had no access to IDP, they had no access to inclusive child care, which again DDA was involved in. They had no limited access to inclusive education. That really only came along after. So if they were lucky, they were...

16:57 registered in an inclusive school, most people were in the institutions. So the image of someone with a developmental disability was someone who had far greater needs than they do today. And the key, I think, has been infant development, which, you know, as Dana says in the documentary we made, there was just one book with, you know, a little bit of information in it.

17:21 And now there's just thousands of journal articles, there's research in universities, and it's just been spectacular. And the other thing is, is that it's had a benefit for early infant development of kids who don't have disabilities, because you can apply the same principles and help to enrich any child's environment so that they're going to learn and maximize their curiosity and what they know about.

17:51 It's just these days it just kind of seems like common sense. Exactly. It's like so many things today that we take for granted. People don't understand how much work it was and how much risk people took along the way to try to promote such ideas because they weren't necessarily welcome in the broader community. I mean as Dana says, the medical profession was very difficult to deal with originally because of course...

18:15 to them a developmental disability was a medical issue and now of course we see it as a social issue. Of course it's a medical issue in some cases but also it's a social and communication is really important certainly through inclusive education. People are far better communicators now than they were back in the day.

18:39 Of course, my big thing at DDA, which I think is very innovative, is all of the technology that we brought in. DDA is a very computerized organization. We have, you know, our whole...

18:53 organizational infrastructures based on computers. But we also have a lot of computers out that are used by the people that we support. And what's really exciting to me is seeing the work that our assistive technology department is doing in terms of supporting people with a whole range of diverse needs to maximize their development. And when you think about it, computers are memory.

19:22 So they provide added memory for all of us and processing speed. So those are two things anybody with a neurological disability needs more of memory and processing speed. So I think there's still a ton of, of, of possibilities in the future for using assistive technology to augment people who have maybe diminished brain function. Certainly the Alzheimer's community.

19:52 you know even though it's degenerative I think there's lots of ways that we could start studying how iPad use and other program use around communications and and so on uh... can help I mean we all use computers every day I know that they help me and they help me with my memory that's for sure set that reminder yes exactly so you know why not everybody

20:19 Now for the listeners, Alana mentioned a woman by the name of Dana. Now that's Dana Brinnelson. She was sort of at the forefront of our infant development program back in, I guess, the 70s, I guess that would have been. And Alana also mentioned this documentary. So I'll just mention that right now is that this year we, to help celebrate our 70th anniversary, our videographer David Osear created a documentary called Doing the Impossible, the story of the Developmental Disabilities Association.

20:49 that is available to be seen on our website you have to go to www.develop.bc.ca it's there, it's available on our YouTube channel as well very very much worth the watch and a very very excellent job by our videographer

21:05 So, moving on a little bit now, also talking about in that documentary a lot is how we got rid of institutions in BC. What role did you play in that? I was really lucky because I worked at San Diego House Society during the downsizing and the board at San Diego House was very anxious to support the downsizing. So, if you can imagine, you would go into the institution

21:32 and the social workers there would group people into groups of four because at that time the optimal residential size was determined to be four. So the social workers would group people into groups of four and generally it was people who knew each other in the institution or maybe had similar sort of behaviors or disorders or whatever. So I would go out and get to go and meet them and then plan.

22:02 their lives in the community. So that meant buying a house and turning it into a group home. It meant hiring up a bunch of staff. In those days, they made $8.50 an hour, so it was extremely difficult to recruit. And it was sort of a new job because there were community living positions, but only in the existing community associations, which weren't very many in those days. So,

22:32 I felt like Martin Luther King. You know, you go in, you buy a house, you bring the folks out. We had to stagger, you know, generally for them to get used to it. You know, they'd go to the institutions, we'd pick them up and bring them home. We took people shopping so that they could pick out their own furniture. And then the challenge was building community capacity around folks. So...

22:58 you know, think about a lot of things, but doctors, we had to get doctors for everybody, and the doctors in the community in those days didn't know anything about people with developmental disabilities, because they'd always just been in the institutions. Getting dentists, getting mental health support, none of that existed in those days, so we had to work with...

23:19 allied professionals to build that capacity and unfortunately some of that has worn away over the years in the sense that psychiatrists for example are extremely hard to get for anybody these days. I think there's a two to four year wait or something like that. So it's always been a challenge. And then of course at that time people weren't necessarily accepted in the community because they were.

23:49 isolated from the community and institutions for so long. So there was a lot of community development that had to be done just with your local neighborhood bakery and your save on foods and just the regular places in community where people go on a day-to-day basis. We also.

24:10 we're working with a bunch of folks who'd never really had any fun before. So we had great times taking them out and going to movies. There was one fellow who came out of an institution and he was in a wheelchair. And we had one staff that was extremely creative and decided that he had never really experienced freedom before so he took them ultra light flying.

24:34 And you know people... There has to be some video of that somewhere. Well there wasn't, but because they didn't, we didn't have video cameras in those days. But it was so much fun. And I think that was the most rewarding part is seeing folks come out of the institution and just blossom. And for the first time in their lives, make choices and decisions about themselves.

24:59 That was going to be my next question. What was that like witnessing that sort of transformation? It was extremely rewarding. Extremely rewarding. And in some cases, you know, people came out of the institution with a list of medications as long as your arm. So sometimes just taking people off of this medication helped because then you could see who the real person was underneath all that and hopefully get better treatment for them in the community.

25:29 I guess particularly in BC now, because we know there are still some institutions in Canada, how much better are we and how much further do we need to go?

25:41 Well, I'm a bad person to ask about how much further do we have to go and what better can we be because I always think that there's more that can be done and we could develop and deliver better services. We could create more independence so that people can live. You know, as long as you are dependent on others to live, you are not necessarily free.

26:11 because you're dependent. And...

26:14 some of the folks that we support have been dependent either on their families or on special education assistance in their school or on the government and the more you're dependent on others the less opportunity you have to make the decisions and choices you want to make around yourself and that's everybody that's not just person with people with disabilities.

26:44 My goal has always been to help people become independent because the more independent they are the less they need to rely on other people and the more they can be free. I want to go back and talk a little bit about Be Pretty again. She was a woman who was so proud of her family. She was so proud of her son John. She was so proud of Bob because even though he did have Down syndrome he succeeded in the community and lived a great life.

27:14 And she was so proud of her grandchildren. So she was an extremely family-oriented woman, which is why I think she spent so many of her years in early motherhood advocating for the kinds of community supports that Bob would need in particular. And she once said, I knew the world would not adjust for Bob.

27:43 So that meant Bob and I had to adjust for the world. And I think that was profoundly wise. Because people in today's world, I mean, are even, you know, they're far more expressive, I guess, is the word I would use. I mean, people.

28:08 in the old days had a certain sense of manners and there was no Facebook or social media that you would put everybody down on. People were nice. So generally people were nicer, but they still stigmatized folks with developmental disabilities. And in today's world, I think there's less stigma. I think there's more inclusion.

28:34 you can have inclusion unless you have accessibility and so for people in wheelchairs or people with uh... challenges around vision or hearing uh... we still don't have a totally accessible community all you have to do is you know ask people and they'll tell you that there's a lot of places they can't go

28:57 I've got a friend with a wheelchair and we were out at a show last Friday. We knew we could come in the front door, but there was only one way out the back and that involved stairs. Right, and that's if there's not a fire. Yeah. Right? So a lot of apartment buildings aren't necessarily accessible when you think about having to evacuate really quickly and you're on your own and you're in a wheelchair. So I won't be happy until we have...

29:26 an accessible, fully inclusive world, and the way to do that is through universal design, basically. And I think a lot of municipalities have caught on to that, and so they are starting to reflect it in their building codes. The city of Vancouver right now has an accessibility plan, so I'm really thrilled about that. And I just hope that the reality reflects our aspirations.

29:53 We're getting there. I think it's on a good path. Now, if you could send a message to everyone in Canada about disability inclusion and support, what would that be? It would be that it could be you.

30:07 All of us, at some point in our lives, experience disabilities. Even if you've just gone into surgery and are home and you're recuperating, you're in a position where you're dependent on others and might have challenges getting out of the house if there's a fire or whatever. So, and certainly as I get older, I realize what some of the disabilities are that come with aging. And...

30:36 you know, I'm quite fit still, but if I, if my arthritis and my hips acts up much more then, you know, I could end up in a wheelchair when I'm older. So you know, a lot of people lose their eyesight as they age, a lot of people lose their hearing. So over time all of us have issues around accessibility and inclusion. And

31:01 That's why I advocate inclusion, because it really affects all of us. It's not just about people with developmental disabilities or disabilities. It's about all of us and our safety and our well-being and our health. And I also think it's really important for all of us to get to know people who aren't like us. Because otherwise we get into these echo chambers and these small little groups.

31:30 and that's all we hear and those are the only people we see instead of sort of broadening our horizons to meet all sorts of different people because everyone has something to contribute. Absolutely. Do you have anything else to add on our 70th anniversary? Well, I would just like to say that 70 years at DDA means we've had 70 years of employees.

31:54 and our employees have actually gone on to work as physicians, physiotherapists, speech and language therapists. They've gone on. Some are probably actors. I mean, all sorts of people have worked at DDA and felt that it was extremely rewarding, and a lot of people have made it a career. So I would just like to thank all of the staff that we've had over

32:24 this fantastic position where we're in now, where people are more and more included in everyday life, people are becoming more and more independent, and there's more and more tools available for all of us to reach our full potential. I think that wraps it up.

32:42 Sounds good.

33:12 Association. It's a fantastic piece of work put together by our filmmaker David Poorsier and it's really worth checking out. Bye for now.

 

Dr. Laverne Jacobs is making Canada proud. Not only has she published one of the first books on disability law in Canada, but has recently been elected to the United Nations Committee on the Rights of Persons With Disabilities. And...she has another book in the works!

 

TRANSCRIPT:

Evan Kelly  0:05   Thank you again for joining us on the Developmental Disabilities Association's encouraging abilities podcast. I am your host DDA communications manager Evan Kelly. Joining me today is Dr. Laverne Jacobs. Dr. Jacobs is a full professor at the University of Windsor Faculty of Law and a former assistant Associate Dean rather, she teaches researches rights all in the areas of disability rights law, administrative law, human rights laws She has published and presented both here in Canada and around the world. And now Dr. Jacobs has been in the news fairly recently, she was elected to the United Nations Committee on the Rights of Persons with Disabilities. The committee monitors the implementation of the Convention on the Rights of Persons with Disabilities by countries that have ratified it. No UN CRPD committee members are independent experts like Dr. Jacobs selected from countries around the world. The special thing about this as Dr. Jacobs is the first ever Canadian elected to serve on this committee. And if that's not enough, Dr. Jacobs founded and directs the Law, Disability and social change project. It's a research and public advocacy center at the Windsor law that looks that works to foster and develop inclusive communities. So it's, so thank you very much for joining me today. Dr. J. Jacobs, it's really quite an honor to have you here.

Dr. Laverne Jacobs  1:27   Thank you. Thank you for having me on the show. And it's a pleasure to be here.

Evan Kelly  1:31   Now those accomplishments go on and on. When you hear that, you know, someone talked about that. How does that make you feel?

Dr. Laverne Jacobs  1:41   Well, I think that as with most people, it can be a bit awkward to be placed in the spotlight. But I primarily feel very grateful to have had the opportunity and the experiences that I've had. I'm grateful and excited to be able to use those experiences to contribute to the the task of furthering the rights of persons with disabilities. And overall, ultimately, I think that it's not the number of experiences that you have, but the ways in which you use them to contribute to the community. That's important.

Evan Kelly  2:12   Yes, absolutely. No. So what right straight to that to the UN committee? What does it mean to you to be not just elected to it, obviously, there's a very select handful of people, but to be the first Canadian on on this committee, how does that, what does that mean to you?

Dr. Laverne Jacobs  2:29   Yeah, well, thank you for the question, placing everything just in a bit of context, I'd say, to start that my concern for disability rights is prompted by my academic and professional experience, as well as by my lived experience as a person with physical disabilities, I use a wheelchair. And I've seen significant and very positive turns in legal academia. One in particular, is that I've seen, people have begun to realize in a much more holistic way, the challenges faced by others. But I think it's not only in academia, but I've also seen this in the practice of law and in society more generally. And so the more that we accept the intersecting identities and growing knowledge, that the growing knowledge about individuals and their experiences, the more that we see that equality rights may look different for different people, because of their different lived experiences. So tying that back to what it means to be the first Canadian elected to the CRPD, I can say that it's a great honour to be part of a committee that works to define equality rights. And set international norm, but also to do that, at this very point in time when there's such a growing recognition of intersectionality. You know, as you've mentioned, we're independent experts. And so I don't represent views of Canada. But I think that coming from Canada and having been an academic here, where I've had the chance to reflect and analyze on various experiences of disability rights law, really gives me a backdrop that I can draw from, I mean, of course, as with any country, there's, you know, positive elements and negative elements. But we certainly have a unique tapestry that I can draw from. So yeah, so it's a, it's a great honor, I think to be the first Canadian elected.

Evan Kelly  4:28   So how many how many countries have ratified this? How many involved?

Dr. Laverne Jacobs  4:35   183 countries.

Evan Kelly  4:37   And growing I hope.

Dr. Laverne Jacobs  4:39   Yeah. Yeah. And growing. A very large number. Yeah.

Evan Kelly  4:45   So can you tell me a little bit about your role within the committee?

Dr. Laverne Jacobs  4:50   Yes, absolutely. So the committee does four main things, I've mentioned a couple of them already. Under the optional protocol is received complaints from individuals and groups, and it also receives inquiries. So requests to conduct inquiries into states, when there are allegations of serious and systemic violations of the convention, the CRPD also conducts regular reviews of countries. So countries file reports, first two years after the convention has come into force for that. And then every four years after that, so the CRPD committee conducts these constructive dialogue with the states parties about their report. And the reports really are kind of an overview of how the country is doing in terms of putting in place mechanisms, etc, to further the Rights of Persons with Disabilities. Another major function of the CRPD committee is to provide general comments. And so these general comments serve as interpretive guidance for, for how to interpret the various articles of the convention. So there are eight general comments, you know, the most recent one actually just came out last week dealing with the rights to work and employment. But there are eight general comments in total right now. And they deal with topics such as inclusive education, women and girls with disabilities and other topics. And they really are important in terms of serving as, you know, guidance for states parties, when they are trying to determine, you know, the best way to understand what the convention actually is trying to get across. And I think the final thing is that the CRPD fulfills various other functions. So their statements and guidelines that are sometimes issues, just recently, again, this month, there was a set of guidelines issued relating to the institutionalization of persons with disabilities. And you know, I'm sure that DDA is aware of this. So these guidelines are created after several months of consultation. And the institutionalization, you know, is of huge importance to many. So yeah. So, sitting on the committee would mean, being involved in some way with these additional, these additional functions, such as the creation of guidelines, etc. So, as a member of the committee, I'd be involved in these broad areas, these four broad areas. And, yeah, I think I think that's about it. If I can just say, I think it's wonderful that you're asking this question, because I think that was such a new role. It's sometimes somewhat unclear as to what committee members do. You know, people sometimes think, people sometimes think that the role is one of advocacy before the CRPD Committee, which it's not so I've had people for example, reach out to me to, to see if I can, you know, represent them, which I can't. But yeah, these are some of the primary things that members of the committee do.

Evan Kelly  8:31   Right, just just a great big overarching look at things. Law and disability your book law on disability in Canada was published in 2021. So when did you begin working on it?

Dr. Laverne Jacobs  8:43   Thanks so much for the question. So yes, law and disability in Canada. It's the first Canadian textbook on disability in Canada, and it was published last year. And I think that in some ways, I started writing it when I first created my seminar in law and disability, which I teach at Windsor law, possibly even a bit before that, is I prepared for that, that first seminar. But I brought together five colleagues from across the country to put together this book. And we started writing in 2017. So it took four years to create the book. And this was primarily due to the original research that we collectively put into the book. There wasn't much written on some of the topics, not much written at all and some of the topic areas that we wanted to cover in terms of the interaction between people with disabilities and the law. Some of the topics that we cover include community living, social benefits, mental health and specialized courts, and the criminal law and justice system and persons with disabilities. We really wanted to create a book that would fill gaps in the law school curriculum, because not much is taught in law schools about persons with disabilities and their every day, you know engagements with the law. So we also wanted to, we wanted to fill these gaps. But we also wanted to foster respect for persons with disabilities in the law in the legal context, regardless of the area of the law. So those were some of our goals. And yeah, it took us four years to put together this first edition. 

Evan Kelly  10:21   Now, is this now a book part of the law curriculum in many schools, or is this sort of with just with Windsor? Or is it a book that anybody can just pick up and read?

Dr. Laverne Jacobs  10:34   Well, it's actually a book that anyone can pick up and read. But it's designed to be a textbook within the law school curriculum, we have had a considerable amount of take up already. So we're quite excited about that. And we also had invitations to speak about the book, you know, etc. So, the book, one final thing I can say is that the book is not only designed for the law school curriculum, it's also designed for people who teach in areas that are kind of adjacent to law. So people in human resources, people in areas like social work, Disability Studies, of course. And so there, there's quite a wide potential audience for the book.

Evan Kelly  11:23   Now, you mentioned you working with five other authors, all legal experts in the field. So how do you define who gets to write about what and how do you, how do you sort of put that all together in a cohesive fashion?

Dr. Laverne Jacobs  11:34   Yeah, it's a great question. We wrote primarily in our fields of interest. So this helped, helped us because these were areas in which we already had expertise. But it also helps the book to cut across the law school curriculum. So for example, I'm very interested in equality rights law and the interactions of individuals with government. And so this is an area of law that's known as administrative law. But what's unique about what I do, the work that I do is that I examine how questions of disability equality or disability inequality exists, and how they can be dealt with, in government itself. So it's really at the points where people with disabilities interact with the government, such as through security, securing disability benefit, workers, compensations, etc, that I focus on. So I focused on a chapter relating to equality and persons with disabilities, generally. So there's a chapter that, that looks at equality law, human rights, law, etc. and international law. But I also have a chapter that looks at Community Living, which was a particular interest of mine. So it traces the history of community living, examines key cases in Canada and internationally, and consider some topics related to living in the community and acquiring appropriate support, including during emergencies, such as COVID, which went on for, you know, quite a bit of time covered quite a bit of the period of time when we were writing. My colleagues similarly wrote on areas of expertise, because their areas of expertise, so that included criminal law, employment law, mental health and illness, women and girls with disabilities, etc.

Evan Kelly  13:37   I really liked that community living is a bit of a focus for yourself, from a legal point of view, obviously, that's a huge one for us. We're we're all about that community living and you may not be aware, we just launched a documentary called Doing the Impossible. The story of the Developmental Disabilities Association. It's, it's really, really a great piece that, you know, I shouldn't be sitting here plugging our own thing, but here we go. But that's available on our website at develop.bc.ca. And, you know, sort of goes from 1950 to or our founder sort of becomes the spark for community living here in British Columbia and beyond and deinstitutionalization. It's quite a quite a good story.

Dr. Laverne Jacobs  14:23   Yeah, I just see, I just see information about it on the on the website. And I'm looking forward to having a chance to seeing the documentary in full. In the chapter that I wrote, and I was very surprised to find how little had been written about the law relating to community living. But in Canada, in the chapter that I wrote, I do use BC legislation actually as one of my examples.

Evan Kelly  14:51   Fantastic. Moving on a bit now. You've been a lawyer for over 20 years. Since you started are disability rights better, are they are we more inclusive, is there anything that's concerning right now that needs to be addressed in your mind?

Dr. Laverne Jacobs  15:03   Well I think that, yes, I mean, yes to both. I mean, I think that there have been positive advances. But I think that there are also challenges that we need to address. So what Canada, I think has done well, is that it's had legislation in place for quite some time. So historically, we see legislation relating to the equality rights of persons with disabilities being enacted, you know, from the 1960s onward. So, things like the Human Rights Code coming into place in 1962, or the Ontario blind persons Rights Act, coming into place in 1970. The Human Rights Code, sorry, I was referring to was Ontario, but we see kind of an early recognition of disability. At the same time, I think that even if historically, we've had this legislation, a lot of legislation has come through the work of advocates. So lawyers, pushing for lawyers and others, not always lawyers that are members of the community pushing to have disability added, for example, as a prohibited ground under the charter or sometimes in legislation itself, the creation of accessibility legislation, etc. So I think that in terms of what we've seen, go well, you know, I think we kind of have a long history a kind of a long foundation. But I think that in terms of improvement, there are, you know, a myriad of concerns that have been highlighted by COVID-19. And that really needs to be addressed. And I think that we need to not always have to rely on advocates right? So I think it would be good if governments were a bit more proactive. Yeah. And moving these issues forward. So, um, so yeah, I guess in my 20 years as a lawyer, and as a law professor, I would say that there are still issues that need to be addressed, and that perhaps the process could be improved as well.

Evan Kelly  17:23   They make an interesting point about, I'm not sure, people would necessarily understand what you mean, by saying, we don't have to just rely on advocates. It's sort of, do you mean, we sort of you need to get to the issues before they happen, in a sense?

Dr. Laverne Jacobs  17:40   Well, yeah, I mean, that we should be creating pathways. And I'm not saying that they're not there, they just could be stronger. So creating pathways so that it's easier to recognize what these issues are. So if you take accessibility legislation, as an example, the whole idea there is to have kind of a proactive way of knocking down barriers, even before they become barriers, you know. And so I think that that's a start. But that type of approach, which is more proactive, could be implemented in other areas as well. So for example, I think one of the kinds of substantive issues that we're seeing a lot, you know, we're having a lot of challenges within the disability community deal with poverty, right. So, you know, the impact of poverty on people with disabilities, and people from intersectional backgrounds, so women with disabilities, people of color with disabilities, and I can, as an academic, I've seen that it's, you know, quite clear that the impact of poverty has led to, you know, all kinds of negative implications for people with disabilities. So, we need to have avenues where those types of issues are addressed. Before, you know, the worst happens. And instead, we've seen, I think, quite a few instances where people are being forced to choose ways to, you know, support themselves or in their lives, etc. Because there isn't that kind of support or avenue for change readily available.

Evan Kelly  19:24   So we almost need to, you know, I've been using the word universality more than then accessibility or even inclusion or because accessibility in a lot of ways. To me says we've designed something, oh, but now we have to go back and redesign it because now we have to make it accessible. But if we approach laws, if we approach anything in terms of design, or, you know, human rights, what have you from a universal perspective, maybe that's just a better way to go.

Dr. Laverne Jacobs  19:58   Yeah, I agree. I agree with that. Yeah.

Evan Kelly  20:02   So can you tell us about law disability and social change project?

Dr. Laverne Jacobs  20:07   Yeah, absolutely. So the law disability and social change project is a research and public advocacy center at University of Windsor Faculty of Law. We work to foster more inclusive communities. So kind of building on what you've just mentioned, our goal is really to make sure that communities are not just, you know, accessible, they don't have space for people with disabilities, but that they actually are, you know, open and welcoming and understand different ways of being. So that's one of, that's what our primary goal is, we have three main pillars, we conduct research, and I would say that's probably our our major pillar. So we conduct research into various topics relating to law on disability. So disability discrimination, generally, we've looked at transportation and equality. We've looked at other areas as well, communities, marginalized communities and disability benefits. Our second area is public engagement. So mainly education, and I can give you an example. We get into the community we, we have held information seminars in the local rehabilitation hospital, for example, online disability topics. And public advocacy is our third pillar. So you know, that's just kind of sharing that education, kind of knowledge. We can be with other other NGO groups, or it can be on our own. So those are the main things that that we do.

Evan Kelly  21:56   Now, in terms of education, obviously, you're a lot of your audience, are university students in law, do you target any high schools or anything like that, where some of this information?

Dr. Laverne Jacobs  22:09   It's no, actually high school, that is a no but high school. They're not on our list. But I was, what we do is, we reach out to people beyond University as well. So you know, we have been involved and invited to conduct workshops, for example, on some of the topics in the textbook. So the loss ability and social change project, while it incorporates students and students are involved, the students, researchers, they are not necessarily the end users. In fact, you know, some of the work that we've done has been, you know, research commissioned by government, for example, where I'll be the principal researcher, and the students will assist. So, so yes, we do reach out, but we reach out more broadly to community than just university students.

Evan Kelly  23:07   Gotcha. So what are some of the more recent projects from the project?

Dr. Laverne Jacobs  23:14   Well, we contributed to the development of the accessible Canada Act. And so that was done at the time when the statute was being created. A recent study from this year dealt with the Social Security tribunal where we examined the experiences of individuals who were seeking to appeal their denial of CPP benefits. So Canada Pension Plan disability benefits. And we looked more particularly at a navigator system that has been set up by the Tribunal to see you know, whether it was working well and how it could, how it could benefit more effectively people with disabilities and from other marginalized communities. Other things that we've been involved with, we regularly provide summaries of key Human Rights Tribunal decisions dealing with disability. In 2021, last year, we created an annotated accessible Canada Act, which is a free resource available on our website. We've also created, there are a number of things. But one last one I'll mention is we during COVID-19, we created a database of you know, news stories, news articles dealing with COVID, and persons with disabilities, that that was really the principal way to get information at the time, there were no cases etc. And that's also available through our website. So we are involved in a number of different types of projects. 

Evan Kelly  24:48   Now, you mentioned you're an author, of course, that you mentioned to me a little while ago about another book you're writing. Can you tell me about that?

Dr. Laverne Jacobs  24:58   Sure. Absolutely. I'm currently in the process of writing a book called law and the right of access from litigation to citizen participation. And what it is, is a book that looks at accessibility legislation and its growth. So the move away from kind of human rights adjudicative approaches to approaches that are designed to be more proactive in removing barriers for people with disabilities. In this book, I look at this development, both historically and comparatively. So I look at other countries as well. But I also try to look at and focus on the interaction between people with disabilities, and the government. So there's a lot of consultation in these types of these types of processes for developing accessibility standards. And so I focus on on the ways in which people with disabilities are engaged and the challenges that they face.

Evan Kelly  26:14   When do you expect to be finished that one?

Dr. Laverne Jacobs  26:17   Well, that book should be out in late 2023 or early 2024. 

Evan Kelly  26:24   So another solid year work for you then. Are you and any of your cohorts involved in sort of looking at the new proposed disability benefit that the Canadian government is putting together?

Dr. Laverne Jacobs  26:36   Oh, that's a good question. So we have not been asked to do any background research but as an academic, I am involved in, you know, conference an academic conference, we'll be discussing the issue. But in terms of, you know, research for this actual the creation of the legislation, no, we haven't been involved in that.

Evan Kelly  27:05   How can organizations like DDA better serve the needs of our community?

Dr. Laverne Jacobs  27:09   Well, I think the best thing that can be done by any organization is to keep in touch with members of the disability community that you, that you serve, and to ensure that you can support those in the community to share their concerns, you know, through the avenues where they need to go. So I believe that listening and effective and sometimes innovative ways of supporting is, is absolutely key.

Evan Kelly  27:35   Okay, well, thanks for tuning in. Our guest today has been Dr. Laverne Jacobs. Dr. Jacobs is a professor at the University of Windsor, Windsor teaching, disability rights law, administrative law, and of course, the first Canadian in history to join the UN's Committee on the Rights of Persons with Disabilities. Really honored to have you on the show today and thanks for joining us.

Dr. Laverne Jacobs  27:58   Thank you, Evan.

 

Rights are usually a foregone conclusion in Canada, however, when it comes to people with disabilities, their rights are sometimes overlooked, or, at best, not really taken into consideration. Accessibility matters, inclusion matters, but making sure these things are enforced and protected takes an entire population to shift its collective outlook. That shift starts with people like Deborah Stienstra, author of About Canada: Disability Rights, Second Edition. Where are we right now, and how far do we have to go?

 

TRANSCRIPT

DDA Talks to Author and Professor Deborah Stienstra About the Current Disability Rights Landscape in Canada

 

Evan Kelly  0:04   Welcome to DDA's Encouraging Abilities podcast. I'm your host again DDA communications manager Evan Kelly. Today's podcast we are joined by Deborah Stienstra. Miss Stienstra is a professor at the University of Guelph in Ontario, where she holds the Juris Loski chair in families and work and is the director of live work well Research Center and Professor rather of political science. Now for many years, she has also been working with the Canadian Research Institute for the Advancement of Women, and FEM North net, or the feminist northern network, which includes working with a diverse group of women and women who identify as having a disability. With having said all that, she's also the author of the recently published about Canada disability rights, the second edition, not, of course, to mention the first edition that was published in 2012. So thank you for taking the time today to talk to us about Canada and the current landscape of disability rights. So just, when I read all that, what do you think, that seems like an awfully large impressive body of work?

Deborah Stienstra  1:11   Okay, so thanks for that. But really, my work in disability comes from a very different place than sort of the academic and literature pieces that you're talking about. And it comes because I was married, my first husband, partner was a man named Patrick Kellerman, who lived with multiple sclerosis. And together, we had two children and raised two children. And we, I was somebody who worked in women's organizing and thinking and research. And he worked in the disability community, for Disabled Peoples' International in Winnipeg. And as his MS progressed, there were more and more barriers, challenges, creativities required to live the life we wanted to live together as a family. And I finally got to the point where I thought, How come I'm separating what I think and research about from what I live day to day as a family member with this, you know, of somebody with disabilities. And so we first started working together on some research, and then when he retired as a result of the escalation of his MS. I kept going in disability rights and research. And it's been a passion for me, and as my body has become more... as I've lived with more impairment, and had to adjust myself to living with disabilities. You know, it's, it's very personal. So yes, I do a lot of things. But really, this is deeply personal. As it is for many of us, I know.

Evan Kelly  3:17   Yeah, that's, you know, once I, when I started, you know, working at Developmental Disabilities Association here in Vancouver, about, I think I've been here for about three years now. Is, is just how many people in Canada actually identify with a disability. It's somewhere around 25%, I believe, and it's just, that's, that's a very large piece of our audience, or just a very large piece of the country. And that, and that's where, obviously, rights need to be more clearly defined and understood. Now, about Canada disability rights that was published in 2021. Now, since the first edition you've seen, have you seen substantial changes in government policy supports or even just some some of the prevailing attitudes in the public? I guess, in a nutshell, have the past 10 years accomplished anything.

Deborah Stienstra  4:04   I think in general, the reason I wanted to write a second edition is because some things had changed. And they were, in my view, substantive changes. So I'm not sure that we could see substantive changes in the number of people who live with poverty, or who are unemployed, or you know, who experienced violence in their lives. And we've seen all of that exacerbated through the COVID pandemic. But what we have seen, I think, is an increasing recognition and awareness of experiences, of the importance of including experiences of women, men and gender diverse people with disabilities, as well. I think we're seeing an increasing response by some governments in Canada, through legislation, so obviously, you know, Ontario has had the Ontarians With Disabilities Act for more than a decade and a half, Manitoba and Nova Scotia have come on, the federal government came on, and you folks in British Columbia have your own Accessibility Act. And while they're not perfect, I think they show something really, really important about our level of awareness and structural change happening, and I see it in things like accessible documents, I no longer have to explain to people why we need accessible documents, there is - or how to make them accessible, right? Like there's so many more resources and procurement, like buying goods and services that are are accessible through universal or inclusive design, or arguments that I have a much easier time making now. So those are some of the big changes that I've seen.

Evan Kelly  6:11   And you mentioned COVID, in your mind, did that highlight some more issues that needed to be considered?

Deborah Stienstra  6:19   Absolutely, I don't think there was anything new that came out in COVID, that we hadn't known before about the experiences and exclusion, and barriers to access. But what it illustrated was how those get intensified in situations of emergencies, and how people need to be included in thinking through our plans for responding to emergencies. And I think the other thing that that came up was an understanding of the intersectional discrimination that different groups of people with disabilities experience. So there's increasing awareness of racialized people with disabilities, who may be working, for example, in health care systems, or chill children with disabilities, seniors with disabilities who live in long term care homes, indigenous people with disabilities and the different access to services that they have if they live in First Nations communities or Inuit communities than those who may live in urban settings. So what we saw and we did a major research project about policies related to COVID, and disability inclusion. And what we found was there is a opening right now to respond to some of the systemic inequity. And if we don't take action now it's not, it's going to be a long time before we get another sense of, of this opening of awareness.

Evan Kelly  8:21   Yeah, I mean, COVID is one thing. Obviously, these are sort of, you know, natural disasters, if you will, the one thing we experienced here in BC, and became a very important thing for us to sort of notice was we had that heat dome last year, if you recall. And we had over 600 people die as a result. And one thing that we realized is that there needs to be better communication, better understanding between people and those with developmental disabilities. Because in one case, I did talk to this one woman who lost her sister. And it was just they didn't know, they didn't know that her room got that hot, and her sister didn't really know how to communicate that. So when, when it comes to some of these things in creating new policies, I guess where does it, where does that fall into in terms of helping define human rights and protecting lives from these kinds of things?

Deborah Stienstra  9:19   Absolutely. And I think that's that example of the heat dome is a horrific but really clear example of what happens when you don't imagine people with disabilities in your decision making and planning. Right? So we didn't imagine the sister that you talked about in the discussions of how to ensure that there were were cool spaces or that there was built in air conditioning or things like that, and how would we have known? Well, we needed to have her or somebody who could, who was aware of her situation, be at the table, in order to illustrate, sort of what she lives with. And I know that you've had a commission of inquiry and that there have been, there was initially a person with disabilities on that, and that that voice wasn't listen to, that that perspective wasn't included, necessarily. And that's, I think, a bit of a challenge. When people with disabilities offer their expertise, they also need to be listened to. So the inclusion needs to be at the table and in the decision making, and in the follow up.

Evan Kelly  10:43   Yes. Sorry. Go ahead.

Deborah Stienstra  10:46   No, so I was just gonna say, I think that's it's a model for all policy. It is about having people with disabilities or their representatives at the table, when decisions are being made with the resources, including financial resources, and accessibility supports, to support their full participation, and making sure that it's not pro forma, that it isn't just, you know, something that is nice. And we can point to the one person who sits on there, that it's, it's substantive, and that it's listened to, and taken seriously. And, part of the decision making.

Evan Kelly  11:32   Absolutely. Now, you mentioned something in the sort of financial vein, the federal government's, of course, I'm sure you're aware of tabled the new Canada disability income benefit. I'm not entirely sure where it's at at this stage. I think it's been through a second reading. But that's, that might be about it. What, what sort of impact are you hoping for this new bill, assuming it gets pushed through?

Deborah Stienstra  11:53   Yeah, and I think that's still up for grabs. I think it's really important for a portion of people with disabilities. And it's important to also not to look at it as the be all and end all of disability supports. So it targets people with disabilities who don't have access to employment income, and who are lower than retirement age, but older than youth. And so what it could do is make sure that they have a consistent, reliable income, that means that they don't have to go on social assistance. And as we all know, social assistance is where lots of people with disabilities end up because we don't have inclusive workplaces, we don't have appropriate supports. So, and we don't have good mechanisms to provide income for many people with disabilities. So social assistance ends up being where folks end up and that is below poverty wages and below poverty income. And so this, if and I hope we can say when, it becomes law, we'll be able to address some of those gaps.

Evan Kelly  13:23   And so the way it is right now, I get the sense that you feel that the government's on on any level, aren't quite doing enough to support people with disabilities financially.

Deborah Stienstra  13:35   I think that disability isn't something that anybody... it is a bit of a lottery, my body works a particular way. And I then in a society where we don't provide supports related to disabilities, I end up bearing the costs of my differences because the society was built for people who aren't like me. So an example that I often like to use is infrastructure and lights. As a sighted person, I need lights to work in the dark when the room is too dark. I don't even have to ask for it. I can turn the lights on because somebody imagined me there. They imagined me as a sighted person needing lights to do my work. My blind friends don't need lights to do their work. Yet they're paying for the hydro costs to give me lights. Well, why shouldn't we pay, as sighted people and non disabled people, for the supports that allow all of us to participate in society? And that's where I think governments have over responsibility to take tax dollars to use for the benefit of those who haven't been imagined in our society and who have to pay for the costs, the barriers to access that exist as a result.

Evan Kelly  15:22   So let's sort of backtrack. What sort of projects are you working on right now?

Deborah Stienstra  15:28   I have many projects.

Evan Kelly  15:30   That, I'm not surprised.

Deborah Stienstra  15:34   Let me talk about two, I am leading a partnership, sort of, grant related to disabilities and livelihoods in Canada. And it's trying to take a notion of livelihoods which is different than work or employment. it's broader than both of those. And it includes, livelihoods are the ways in which we make a living and a life. And so livelihoods can be about how we barter, how we provide care, how we have market gardens, how we do arts and use those as sources to support ourselves. And so we're looking at how people with disabilities in Canada, in a couple of different areas, help us understand this notion of livelihoods and how it helps us understand both participation and inclusion in society. So we're looking around the area of volunteering and people with disabilities, we're looking at arts and people with disabilities. And the one that I'm in particular focused on is around pre employment supports, and young women with disabilities, and what does it take to address for example, the childcare needs of young women with disabilities or the educational gaps or appropriate supports to ensure better access to income. So that's a project that I'm pretty excited about, we just got noticed that the disability and work conference in November of this year, we'll be presenting a panel on some of our research related to that, and I'm excited about that.

Evan Kelly  17:29   That sounds really good. I don't know if, you're in Ontario, we're out here. But here at DDA, we've got two social enterprises, one of which is our organization called Jobs West, where we actually, we work with employers and clients so that people with developmental disabilities can find and keep jobs. It's a big part of what we do. So it's, it's super, super important. Let's talk a little bit about MAiD the medical assistants long dying this is this is this is a big topic here in Canada right now. Of course, it's DDA we haven't really taken a stance on this. But I'm starting to see other newsrooms around the world publishing content, saying some pretty nasty things about Canada, how we're now practicing eugenics, and killing disabled and poor people. What are your, or your primary concerns when it comes to this kind of a law?

Deborah Stienstra  18:29   Well, I have oh so many concerns. I think that medical assistance in dying as it's come to be developed through the various amendments and changes and law in Canada is one that privileges white people, often who aren't used to having to be dependent or rely on others, to live their lives and don't want to imagine themselves as people who are dependent and so they see that as something they'd like to avoid. Well, for lots of people with disabilities, we know what it's like to, you know, require supports to live our daily lives, whether it's somebody to check in on us or somebody to wipe our bum or change our diaper or somebody to change the catheter or give us food or whatever. And so many of us don't feel as much like we've lost our dignity when we are in those relationships of care and dependency, but see it as sort of an interdependence. And I think what MAiD is doing is creating space for some people to have a choice and I'm glad that some people have that choice, but in other cases, it's creating a situation where folks who haven't been able to get the supports that they need to live or to live well, whether that's because they can't access housing, and they have chemical sensitivities, or because they've had to live so long in poverty, they're just kind of worn out of trying, or they haven't been able to get the medical supports they need. And somebody offers it to them as an option. And it may be somebody in a relationship of trust, or somebody, like the stories that have come up lately about Veterans Affairs, raising it as an option. So to me, medical assistance in dying in those situations, is something that is not a choice, but is a forced situation, we are not able to provide the necessities of life. So people think that their only option is to end their lives. I've called this other times sacrificial citizenship, where people don't, with disabilities, don't want to be seen as a burden to their families. And they've been told that they're a burden on society, or they cost a lot to take care of. And so they sacrificed themselves, well I don't think that's appropriate. So I think, I think it was really troubling to have the substantial changes to MAiD discussed in the middle of a pandemic, where people with disabilities were the ones bearing the heaviest burden of the pandemic barriers. So I think there are lots and lots of problems with this. And and I think the government, the federal government, pushing forward on MAiD full steam, but dragging their feet on the disability benefit is not a very good sign, right? They should be pushing forward on the disability benefit and dragging their feet on medical assistance in dying.

Evan Kelly  22:20   Yes, perhaps a little bit backwards. So I mean, I've been reading some sad stories, similar to what you've just been discussing. So how through Disability Rights do we protect those who may not see another way out of a bad situation, but death probably shouldn't be their option.

Deborah Stienstra  22:40   First, we need to be there for each other. Pierce support is a really, really important part of living with disabilities. And we all feel stronger when we know we're not alone. And it's hard when you feel like you're just being ground down by your day to day existence. So I know behind the scenes, a lot of these public conversations, my colleagues in the disability movement have been advocating and raising funds so that people feel like they have more choice. But that can I mean, with more and more stories coming out, we can't do that in every case. So I think as advocacy organizations, there's a responsibility to continually prod and push and articulate the gaps in care the reasons why this is happening. I think, folks like cat, Catherine for Z and others have just done an exceptional job in having Gabrielle Peters really exceptional jobs in her in raising the concerns, and making sure that we understand that racialized and indigenous people with disabilities are those who experience more of more of the push toward medical assistance and dying, because they often live with more of the poverty and the barriers to access. So I think, you know, listening and supporting and circulating what those folks have been saying is really, really important. And, you know, for those of us who are lucky enough to get invited to speak publicly, and bring it up at every single person, I mean, when I'm interviewed by the press, I often bring it up, because they don't think of me as somebody who is a maids spokesperson, but I think it is not letting those stories go on tooled, like not letting government's step away from the responsibility of the situation they've created.

Evan Kelly  24:53   So what are some of the biggest challenges you face in trying to elicit change on any particular level of government?

Deborah Stienstra  24:59   Governments are very slow moving, frankly. And they are accountable to an electorate regularly, like every four years, and there's always the possibility of not having the same government or the same government with the same priorities. So, for me, governments are only a piece of the advocacy toolkit. I keep my relationships with those bureaucrats inside governments close, because they're the ones who are more stable. But we also reach out to ministers and, in committees and things like that. But I think it's also about using social media, effectively, it's about sharing information. You know, as a researcher, I have access to lots and lots of information. And part of what I see my job is, is to make sure that what we learn needs to be not just shared in formats that policymakers can understand, but in formats that public health folks want to know. So having factsheets or hot topic sheets, or policy briefs or Twitter, you know, bite sized pieces, so really trying to reach out and raise awareness of a lot of these issues.

Now, in general, how was Canada doing in terms of disability rights? Are we on the right road? And obviously, there's, there's problems and a lot of things we've we've talked here, but are we, are we on the right path? Or does something need to be rewritten? I know that in reading some of your bio, you mentioned this universal planning rather than, I mean, because from a disabilities point of view, we often look at making something accessible, which, you know, that sounds good. But coming at it from a universal perspective, rather than just making something accessible at the moment. So I guess it's a sort of a, a big, big blanket question is, do we need to sort of change our perspective? Or keep working on changing our perspectives? Like how far have we got to go?

Right. So we began this conversation by me saying, yeah, the research is fine, but really, this is personal for me. And what I find is, change happens when people can see a personal link. And they can then imagine, when they begin to hear stories of people who are real human beings and the implications of those stories. So the change, I think, Canada is not dissimilar from many other places around the world. Some good, lots of bad. But I have hope, because the advocacy of disabled people together with their families, or the representative organizations, and really pushes when they, we are out on the streets and in a playground. And you see a disabled child on a swing that's been built to be accessible through using inclusive design. It changes your notion of who are disabled who are children, right, because you now include in your picture, this child who may be in a wheelchair, as part of your neighborhood, and I love to tell a story of somebody, a leader in the disability community, Jim Dirksen who recently died. Jim lived in my neighborhood and Winnipeg when I lived there. And Jim was an amazing character. He was a wheelchair user, he had polio when he was younger, he wore very evocative clothes like you always knew where Jim was, but he made, he just drove around my neighborhood. And everybody in the neighborhood knew Jim. And it was no big deal, right? Like, by being present in the neighborhood in house like all the rest of us, he was our neighbor. And that's I think how change happens is when people with disabilities are part of our communities, when we are included without having to make big adaptations or whatever when we use inclusive design in our homes so that people can visit us who may have mobility barriers or you know, when we have scent free environment so that folks with chemical sensitivities can be at discussions and meetings. Those are all ways that we build inclusion and belonging. And we recognize that disability is just part of the range of what human life is about.

Evan Kelly  30:31   I think you wrap that up nicely. I was gonna say if you do have anything else to add, but I think that just sort of hits hits it right on the head. It's all part of it.

Deborah Stienstra  30:39   I think so. Yeah.

Evan Kelly  30:42   Just one thing that your your book about Canada disability rights, Second Edition, where do people find it?

Deborah Stienstra  30:49   You can find it on Fernwood Publishing's website you can also find it in in some stores. It's available... It's available as audio book, as well as a PDF book and hardcover book. So it was my first experience in having an audiobook which was a lovely thing to have this, a woman read my text with lots of things. So there are a number of ways for folks to do it. But Fernwood publishing is the best place to look. So that's where you can find it on Amazon and all those other places.

Evan Kelly  31:30   I believe I did see it there. Yes. But Fernwood publishing is the main one. Okay, well, today we have been listening to a developmental disabilities encouraging abilities podcast. Our guest today has been Deborah Stienstra. Again, author of about Canada disability rights, Second Edition, disability and woman's advocate and professor of political science at the University of Guelph. Once again, we thank you for joining us today.

Deborah Stienstra  31:54   Thanks so much. It's been a pleasure.

 

Esther Thane is an expert in music therapy whose team helps families with children who have autism communicate and reach behavioral objectives while exploring the universal language of music.

 

TRANSCRIPT

Evan Kelly  0:04   So welcome back to DDA's Encouraging Abilities podcast. I'm your host, Evan Kelly. I'm the Communications Manager here at Developmental Disabilities Association. This is where we connect with advocates in the disability community, help tell their stories, raise disability awareness and just be a supporter and advocate for them as well. For those who don't know about us at DDA, we are a community living agency that serves Vancouver and Richmond, we support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. So yay, this is our 70th anniversary. We recently came across an article that's actually quite near and dear to my heart. In fact, it's been published a few times over the past couple of years that drum lessons have a positive impact on people with autism. Now, I've been playing drums for over 30 years, so I thought the impact was fantastic. And I just read this on the website disability scoop, so I'm going to read this verbatim from the website about their research, "researchers looked at 36 people with autism between the ages of 16 and 20 with no drumming experience. 19 of them received 45 minute drum lessons twice each week for eight weeks while the rest took no lessons. All of the participants were given a drumming assessment and an MRI scan at the beginning and the end of the study, and their guardians were asked about their behaviour. At the conclusion of the intervention, those who improved their drumming abilities showed a reduction in hyperactivity in attention and repetitive behaviours and they displayed better control of their emotions. According to findings published recently in the journal Proceedings of the National Academy of Sciences. Now that is just drums. So music therapy obviously covers a lot more than just playing drums. So joining us today is Esther Thane who operates ET music therapy in North Vancouver and Richmond, ET music therapy covers a wide range of musical mediums all focused on treating autism and they have been operating since 1996. Esther has been involved in music and music therapy for years and used to teach the Bachelor of Music Therapy Program at Capilano University and has received several awards for her groundbreaking work. So welcome to the podcast.

Esther Thane  2:06   Thanks so much, Evan. Happy to be here.

Evan Kelly  2:09   Excellent. So what initially inspired you to work in the field of music therapy?

Esther Thane  2:14   Oh, gosh, that's a long story. I'm not sure everyone wants to hear it or not? Well, we were very musical family. I mean, my parents are not musical. But it's something that they always pushed my sister and I to do so ever since we were children we were involved in choir, vocal lessons, piano lessons, theory, etc. We were in band, etc. And my sister is a concert pianist. Her and her husband have a piano duo called the Bergman duo here in the Lower Mainland, and I watched my sister as a child, I was younger than her and I watched her practice diligently for four hours a day plus, and thought to myself, that's not what I want to do. However, I realized very early on that music was one of the only things I did know how to do and was good at so at the same time, I didn't want to teach recorder and ukulele in the school. So I thought where do I go from here? Where's the middle ground? And I hadn't heard about music therapy whatsoever. But my parents encouraged me to take a year off of university because I was just, you know, accumulating student loans taking this and that and not knowing what I wanted to do. So I took the year off, and I was living in Germany. My sister at the time was also in Germany, studying music. And at the end of the year, I was supposed to, of course, find myself in that year's time and decide what I wanted to do for a career. But that hadn't really happened. And a few months before I was leaving to come back home, I was going for a walk with my sister and she said, well, what about music therapy? And I just, something inside me went, that sounds good. I had no idea what it was. But I just kind of took a leap of faith and thought that's probably what I want to do. So I did all my prerequisites. I got into the music therapy bachelor program at Capilano. And that first day I remember sitting in class and all of my classmates were telling stories about in the summer time how they volunteered with this music therapist and did this then that. And I still had no clue what music therapy was. But my gut told me this is where I'm supposed to be. So it was really as simple as that, of just, you know, taking that leap of faith that blind faith and as I was going through the program, every week that I progressed in the program, realizing this was, this was my vocation. This was my calling. And the first time I saw a video of kids with autism in music therapy session I thought to myself, and that's the population. That's the community I want to work with. So I've never looked back.

Evan Kelly  5:07   What does music therapy offer that other therapies don't?

Esther Thane  5:12   Well, you know, that's a really good question. And I think what I always say is that any child, like when we're just talking about children, because of course, music therapy you can do with adults, you can do in palliative care you can do with brain injury, there's a myriad of different diagnoses and conditions that music therapy can target very eloquently and beautifully. But when we're talking about kids, I always say, you know, a child will integrate new information at a deeper level, new skill sets at a deeper level, if it's coming from a place of inner motivation. So instead of being taught and told what to do to explore and experience it on their own, and they will integrate that new learning differently. So, you know, for me, I think we are really lucky, and we're blessed. And we kind of have this extra thing called music as our partner in therapy that other therapies don't have. Because for most kids, I mean, not all but for the majority of children, and individuals in the world, all adults of all walks of life, music is motivating. Music is something that helps us pass the time, it makes time go faster, you know, I'm a runner, if I don't have my music with me in my earbuds, I can't run a block. But if I have music the time, just you know, that's why we listen to music on long trips, you know, it warps the perception of time. And I think for kids, they come into the music therapy space, feeling like it is more effortless that they're just having a good time. And they have no idea that we're targeting all of these sensory systems and primary systems simultaneously, just by making active music. 

Evan Kelly  7:00   So it's just you taking it from the point of view that this is fun. This is fun. Yeah. I mean, as musicians, you and me both can attest to that. 

Esther Thane  7:08   Yeah, you know, otherwise, we wouldn't be doing it, right? 

Evan Kelly  7:10   Exactly. Yeah. Now, have you always only just primarily sort of worked with autistic children? Or have you worked with adults? Other neurodiversity? Or PTSD or anything like that?

Esther Thane  7:23   Personally, I would say my wheelhouse is developmental delays in general, all diverse needs from autism to ADHD, Down syndrome, anxiety, some depression, any different developmental conditions, and of course, have worked all the way from, you know, two year olds, to adults, so yeah.

Evan Kelly  7:46   Wow, that's good. Now, your website says this is quoting your website, children with ASD seem to enjoy musical experiences, because they're often good at it. Can you expand on that?

Esther Thane  7:57   Yeah, I mean, I, that is a little bit of a blanket statement. And I don't want to generalize with that statement. However, really, in my experience, that's what I've seen, they are good at it. And what I mean by that is, there is a special relationship with autistic kids and music. It's a medium that they often prefer to live within. They have often more sophisticated musical tastes. They have incredible memory recall, you know, I had one client come in, and we were just improvising the whole session. And a whole week went by, I'd seen multiple other clients in the meantime. And when he came back through the door, he remembered the exact music motif from our improvisations a week prior, I couldn't remember because I had had many different improvisations with lots of other clients in the interim. But they can hear something, they can memorize it, they have unbelievable appreciation often for even just chord progressions and chord structures. And, you know, for me, I was so spoiled by that, that element within their personalities, because I've worked with hundreds of kids with autism before I had my own children. And then when my own children came along, I was like, perplexed, why, why aren't you so excited about music because, you know, as a musician, I am very excited about music, and it's my passion. And it's, it's what really gets me from within, you know, and I was always able to share that joy and that passion with the kids that I was working with, and, you know, my kids, they love music, too, but, you know, they can kind of take it or leave it. They weren't as like, they didn't get the, you know, the goosebumps like I do when I hear certain chord progressions, and you know, and so I think I was really spoiled all those years with with working with them and, and I think that's something that we share on a on a real visceral level.

Evan Kelly  10:04   Yeah, I mean, as you know, again, as a musician, I feel lucky that we sort of connect with music on those levels, and then sort of go and play it and have fun with it. Now, music obviously can be very structured in a lot of ways. If it's sort of written down and written there, there's a song you're supposed to play in a certain way, a certain tempo, a certain loudness. But you've also mentioned improvisation. And it seems to me that kids with autism, appreciate that structuredness. But how does improvisation work?

Esther Thane  10:36   Well, you know, it really goes on a case by case basis, you know, when when a kid comes through the door, we're really assessing informally, what do they gravitate towards? What types of instruments, what genres of music, what kind of musical experiences do they gravitate towards, you know, some kids really like structured music activities, where we're really addressing auditory discrimination and temporal skills, and temporal pacing, and self regulation through the music and other kids just walked through the door, and all they want to do is improvise. So when we're improvising, we're having a conversation. And I think for autistic kids, often, they love music, because it's a non threatening language. And whether you are verbal or nonverbal, we can all communicate through the music. So if a child is saying something, by playing three notes on the piano, the music therapist can take those three notes, they can shadow those three notes and create a whole music motif and structure around that. So we're letting that child know I hear you, in whatever you're doing, if you hit the drum once, we're gonna hit the drum and accompany you, and just play when you're playing and match you. And so in that way, you can have a call and response conversation back and forth. That doesn't require words, it's really the skills of the music therapist intuiting what that child is trying to say, through the music, what their emotive expression is in that moment and matching the intensity. So it's not just about matching the notes, but it's matching the intensity or the intent that we're perceiving behind what that child is giving musically.

Evan Kelly  12:36   Now, you mentioned nonverbal, I assume you work with some nonverbal clients as well. Do you find that music helps them open themselves up a bit? 

Esther Thane  12:47   Oh, absolutely. You know, we can just start out with vocalizing even if we're nonverbal, and we don't have the ability to form language, it doesn't matter in music, right. And we can take a microphone and an amp and we can just vocalize and we can match the client's vocalizations and create again, music around whatever it is that they're vocalizing. If it's a simple hum or grunt or just an ahh or an eee sound. They are it it kind of opens up this whole channel of expression that doesn't require language.

Evan Kelly  13:23   So it'll be almost be anything it needs to be or anything it wants to be. 

Esther Thane  13:26    Absolutely, you've got it. Yeah.

Evan Kelly  13:29   That's amazing. Now, how much of your practice is based on vocal therapy and how much is on actual instrumentation?

Esther Thane  13:36   You know, I would say it's pretty half and half, the therapists, we have it ET music therapy, they use their voice acapella all the time. They use the voice as a primary instrument, but they also use the piano and the guitar. So yeah, it's almost like, I would say almost a third, if you know, actually, it's a third guitar, third piano third voice, but it's always intermixing and changing, you know, the dynamic changes. Depending on each child, you know, some children don't want you to use your voice and they, they don't want to hear you sing, they just want to hear themselves sing. And, you know, some kids are more instrumental based. So again, it's a real, a real case by case basis.

Evan Kelly  14:21   Do you find, I mean are there benefits to either or do they sort of have similar outcomes in what you're after?

Esther Thane  14:29   Well, you know, it depends. If the child, if one of the target goals is language acquisition, then of course, we're going to use more oral motor vocalizations. We're going to use the kazoo to use that as an outlet for expression to explore the voice and making sounds. You know, that whole pre verbal level first, but certainly expression can be absolutely just through instrumentation. You know, we have a lot of kiddos that come in the door and you can tell from the get go. And you probably are the same way as a drummer for so many years, you can you can pinpoint who's the rhythmic guy in the room, right? They come in and they're tapping on the walls already, they're tapping on the doors, and they just need to get things out rhythmically. And especially if a child is having a really frustrating day. And I think everybody can relate to that, having that outlet, that cathartic outlet to just wail on the drums, you know, and feel heard and know that that is an quote unquote, appropriate way to get any anger out, or any frustration that you have, by you know, wailing on a conga drum or something or djembe, where it's going to be heard, and it's going to be accepted by the therapist in the room. And, and we feel better after.

Evan Kelly  15:49   I can attest that that is an appropriate way to get rid of some emotion and energy. Absolutely. In terms of like instrumentation and vocalization is all you know, obviously a part of that. Do you try and teach them musical theory? Or like, Hey, have you heard of this guy? It's Rachmaninoff? Or it's, it's Rush?

Esther Thane  16:13   Yeah, well, you know, I mean, great comparison, all the way from Rachmaninoff to Rush, absolutely. And anywhere in between, you know, somewhere there's a book in there, Rachmaninoff to Rush. That's a great book title. Again, it really depends on where the interests are for the child and kind of a main foundational principle of music therapy, not dependent on you know, any type of person you're working with is that music therapy is going to be way more effective if you are using the client's preferred music. So whether or not you like country music, if the client likes country music, you gotta go there. You know, if they like classical music, then you're gonna go there. And we find that, you know, in general changes can be made in the brain based on music preference. There was a study, I don't know, quite a few years ago with Oliver Sacks. And you know, Oliver Sacks was always a real advocate of music therapy. And, you know, he wrote that that book musicophilia. And there was this one YouTube that I was watching that he did, where he was getting an MRI of, you know, when he was listening to certain music, and it was very well known that he preferred Bach to Beethoven. And what they did was they, I can't remember what university he was at. Well, I won't, I won't try to say what I can't remember, anyway. But what they did was they found a piece of Bach music that he had never heard before. And before that, they played Bach. And they played Beethoven. And they could see that the activity in his brain was less when they played Beethoven. And then they played a Bach piece that was just kind of later on in Bach's compositions. So it was kind of the end, almost nearing the end of the Baroque period, he was kind of touching on some classical and romantic, you know, essences of Beethoven. So he wasn't sure himself if it was Bach or Beethoven. But his brain scans showed it, that he was more lit up listening to the music. So I think his premise at the end of this experiment was that, I may not know or I think I know what I like, but my brain actually knows what I like, and responds more. So I think that's a really key principle, is that where that child wants to go to if they like reggae, if they like pop music, if they like alternative, or Rush or classical. That's where we really start the therapy from, we're always going to use what motivates the child because again, if it's coming from that place of inner motivation, it's effortless. And, you know, I don't like country music. So I'm not going to be receptive if you're playing country music for me.

Evan Kelly  19:12   Maybe some Keith Urban. 

Esther Thane  19:15   Maybe, maybe, yeah, you know, but it's, it's really what is invoking this kind of interest and curiosity, and it really is dependent on where they, what they like, and what they're humming. And, you know, that's one of the first things we do when I'm talking to parents at the beginning. Before you know, just for the intake information is I asked, you know, what kind of music does your child listen to? What are they gravitating towards? What are they dancing to, you know, whether it's a theme song from a kid show or something they found on YouTube or if they like Metallica, then we prepare our therapists. That's what they're going to do in that first session. So that becomes that icebreaker and bridging the gap you know, so we're establishing rapport with that child using the music that they love. Because then they feel heard and understand, understood, you know? 

Evan Kelly  20:07   Now, does that mean you've got to hire people that can play Metallica or Rush? Workout some riffs here for you?

Esther Thane  20:14   Yeah, well, you know, I think a lot of the music therapist life, from a day to day basis is learning different types and styles of music based on their clients. So you know, you whether you like it or not, you kind of have to, because we have to go there so that we're meeting that person where they want to be met in the music. And that's, you know, my curriculum that I created is called meet in the music. And that's, you know, as the name says, it's really about meeting that person in the music and going on this journey together.

Evan Kelly  20:48   Now, like in terms of the instruments, I mean according to the article that I've sort of inspired me to talk to you about this stuff, drums work well, what other instruments do you find work well? Is it sort of whatever? Again, a case by case basis, I would assume, yeah. But uh, you do find that there are other certain instruments that work better and helping the child progress?

Esther Thane  21:08   A great question. And again, you know, there's no magic formula to that it's each child, you know, is is their own case, we try to have at both of our Music Therapy Studios a whole myriad of different instruments for the child to explore from electric guitars, to electric basses, drum kits, we've got a harpsichord in our Richmond studio, we've got pianos, we've got a harp, we've got in our North Van studio, we have a big four foot long tone drum like a slick drum that has lots of different tones. And we can turn the drum over on the side and the child can lie on top of the drum and the therapist is playing on the side of the drum. And they're getting all of this deep vibrational input, which really helps with self regulation, it helps calm their systems down, and it brings them to an appropriate arousal level, so to speak. 

Evan Kelly  22:07   And that sort of brings me to the parents aspect of this, do you find that the clients that come to you, are they... Are they just using the music program in addition to other therapies? Or are they sometimes coming to you because they've exhausted other therapies?

Esther Thane  22:25   Both. Yeah, absolutely. You know, the music therapist is enhancing all of the other goals that the rest of the treatment team has. So you know, if a speech therapist is working on language acquisition and wants to work on ideation of thought, and for the child to formulate their own sentences, and have conversations, we do that in the music. We'll sing different things to each other, will sing questions and answers to each other. You know, an occupational therapist might be working on motor practice and gross and fine motor skills. Well, naturally, we do that, I mean, when you're playing an instrument, when you're striking a drum with a mallet, you're working on eye hand coordination, you're working on mallet grasp. If you're playing an instrument, like small percussion instruments, where like a triangle, for instance, everybody knows what a triangle is, and you know, you're holding the triangle with one hand, and you're holding a mallet with the other. So you're doing two different things with two sides of your body. So I think naturally, we're always targeting multiple goals simultaneously.

Evan Kelly  23:31   Now, how soon after starting music therapy, do you notice changes in your clients?

Esther Thane  23:37   Again, that can really vary. I mean, you know, a lot of parents will say to me on the phone, well, you know, my child doesn't attend, doesn't have a high attention span can maybe only tolerate a half hour, you know, in any activity. And I'll say, well, let's just, let's just give, you know, let's just wait and see how it is in music. Because again, that perception of time, it's evasive, it just, it's gone when you're actively making music. So, you know, for some kids, they come out, you know, the withdrawn kid just comes out and starts to blossom and express themselves in different ways. Because it's a different outlet than when we, the rest of what we see in society where we're just kind of walking and talking and having to act a certain way. And in music, we can express ourselves creatively, some kids, you know, they progress in different ways. You know, I've had clients that have been very anxiety ridden, very disregulated. And all they do is scream for the first you know, couple of sessions or even months or it's hard to get some kids even to come into the space to go over that threshold of the front door and go into an unknown environment. But then they don't want to leave you know, so it really depends, you know, some kids start vocalizing and saying words for the first time, after a few sessions, some kids, you know, it'll take longer, but they're also very highly motivated to come back. Because again, they're building this relationship with the therapist in a different way where it's not, you know, sit down table work here, we've got to go through these exercises, etc. And, you know, kind of coming back to one of your original questions about do we teach theory or music, that's often a natural progression that will be incorporated in the session. So, you know, some, some kids are with us for many, many years. And after they've kind of gone through the traditional music therapy route of different activities and improvisation. As they grow up, it kind of naturally evolves into music lessons, but it's more adapted music lessons, where, you know, the therapist is very knowledgeable of, you know, what things are going to trigger the person, if they have any auditory defensiveness, you know, do they need frequent breaks, because they need to do some spinning or movement, or stimming of some kind, you know, we have that flexibility as music therapist, so an adapted music lesson looks quite different than a traditional music lesson.

Evan Kelly  26:23   Now, do you find that they're permanent changes in emotional control under behaviour through music therapy? Or is this something that you find things to keep going for a longer period of time?

Esther Thane  26:33   No, you know, I think that because again, I know I keep kind of coming back to this same point, because they are motivated from within, because there is a natural curiosity to explore music, a child's attention span can naturally just be extended, right? We know that a child when they're interested in something, and they're focused, they can focus for hours, right? If it's something that intrigues them, and so the more often you're doing this, the more that's going to generalize and carry over into when they walk out the door. And they're going to be able to regulate for longer periods as well. You know, and we always encourage parents, you know, to do different things at home and use music, in day to day tasks, anything that's going to make it more fun, whatever it is that the child doesn't, you know, warm up to immediately you can add this whole level of music to it. And, you know, it's just, I don't know why I just thought of this, but thinking about, you know, Mary Poppins, when they were cleaning the room, and she started singing, you know, a teaspoon of sugar makes the medicine go down, right, and singing that song, all of a sudden, the task of cleaning the room was easier. You know. So I think it's marrying music with things also that are not preferred tasks to do, kind of alleviate any anxiety around it, or stress and make it a more fun experience. You know, there's, there's a reason why in every single culture in the world, throughout the history of mankind, there's music, you know, I think the oldest instrument is a flute, they found 30,000 years ago, you know, there's something inherent inside human beings that we want to express musically. We have rituals, in our cultures, there's no culture that doesn't have music, be integral, we always have found time, even if we're chasing, being chased by dinosaurs, or well, okay, whoever, you know, we feel this need to express through art in general. And, and so I think that is something that's universal. So that's why music therapists could work with a child who comes from an entirely different country and speaks a different language. And they can still build a relationship through music. It's a whole language of its own. And there aren't a lot of activities in the world that you can do that.

Evan Kelly  29:01   No, there definitely isn't. Now, what ongoing work in your field right now has you the most excited?

Esther Thane  29:10   Gosh, I would say, what makes me the most excited is bringing it to everyone else in the world to realize that, you know, yes, there's the profession called music therapy. And yes, people go to school for it and get lots of training and medical and psychology and therapy and blah, blah, blah, blah. But what excites me is, creating this, this level of awareness that people realize they can be doing this, they can do a level of music therapy for themselves, they can do that at home, that we don't own the therapeutic benefits of music. And you know, I think that a lot of that has been lost in our culture. You know, we pay money to go to concerts and sit quietly and listen to music. You know, we don't make music anymore. In the household, you know, 100 years ago, there was always a piano or a violin or accordion somebody in the family did that. And after supper, that's what you did. You sat around and you made music. That was your MTV that was I mean, even that's dating us, a little bit, of but that was our technology that was our devices, you know, was making your own music and expressing that. And I think, you know, for parents to get back into that to feel confident that they can use their voices with their children that you can vocalize and sing and, you know, we get shut down at a very early age, often in music education, by being told by teachers, especially if you were in a choir, I'm sure there's people out there that can relate to this experience at a young age, if you're in a choir, and the teacher said, just lip sync, right? You're tone deaf or you're not singing the right. So just pretend that you're singing, and those old truths, they stay with us throughout our entire lives. And then we have our own kids. And we're convinced Oh, I don't have a good voice. I can't sing around my children. But we're forgetting that the voice is the first way that your child connected with you, whether you're a father or a mother, you know, the, the auditory system is the first sensory system that's fully developed or gets developed at four months gestation. So that child has been listening to the mother's voice inside in utero, all the time, they are hearing the father's voice through the womb for many months before they come out. So when you speak, when you sing, you know, chances are that's the most beautiful sound your child has ever heard. Because that's what is familiar with them. And so that should keep going, you know, and, and being able to just free yourself of any sort of criticisms of your voice, you know?

Evan Kelly  32:01   I could see that being pretty daunting for parents, because I know lots of friends and fellow parents who are like, Oh, I haven't got a talented bone in my body. The idea of, you know, offering music to my kids isn't difficult for me. I'm not a great singer. But they know, I play drums and I can, they know, I still play music in a band. So they know that element is there in their life. And as much as I'm trying to push it onto them, yeah, forget it. They're not interested. Yeah. But it's there, you know, and we, my partner, or I, our partner and I are always playing music in the house. So we're always trying to make sure that that's there. Now. ET music therapy already has quite a big team. How do you see your company changing in the next decade?

Esther Thane  32:41   Well, you know, I think we're always expanding, we just hired two new music therapists and, you know, we've got the two studio locations. I foresee in the future, you know, that maybe we're going to expand to another studio location, you know, right now we kind of serve the whole lower mainland and depending on where you're situated, where it's closer to, you know, where's easier to go to, is it Richmond, our Richmond studio or North Vancouver studio. So we have a lot of clients that are in the Vancouver area, but travel to us because we are open seven days a week in both studio locations. So, you know, that makes a little easier for parents to travel on the weekends. But certainly expanding, growing, getting a new site, maybe, you know, all of our therapists are using, as I mentioned before, the curriculum that I've created meet in the music, and it's on a cloud software therapy and documentation software called Unitas TI. And there are music therapists now that subscribe all around the world that are using that curriculum with their clients in Australia, in the US and across Canada. So just you know, helping to spread the word and get music out there to the massesm, really.

Evan Kelly  33:56   We're doing what we can. Now, do do clients need ta referral? Or can they just approach you for services?

Esther Thane  34:03   They can just approach us, no referral is necessary whatsoever. On our website, there's a Contact Us form, and they can just fill it out. And then I usually have a nice chit chat with them on the phone and get to know who their child is, you know, what their preferences are, their challenges, their strengths. And then we try to see if we can fit them with a good music therapist and a good time that you know, they can come for weekly music therapy.

Evan Kelly  34:31   That sounds really good. How do people get in contact with you?

Esther Thane  34:33   They can go to the website. It's www.etmusictherapy.com

Evan Kelly  34:41   Well, that's fantastic. That about does it. We have been speaking with Esther Thane and she is the creator of ET music therapy. That's a music therapy organization that caters to families and children with autism. They've been around for how long you've been around for about?

Esther Thane  34:57   26, we're on our 26th year yeah. Absolutely.

Evan Kelly  35:01   You're going strong and in North Vancouver and Richmond, correct?

Esther Thane  35:04   Correct, correct. And we see all diverse needs. You know, certainly our specialization is autism. But we see all different, all different walks of life.

Evan Kelly  35:16   Thank you very much for joining us today.

Esther Thane  35:17    Thank you.

 

DDA operates nine child development centres in Vancouver and Richmond. As the province shifts towards a $10-a-day childcare system, we reached out to childcare advocate Sharon Gregson about where we are now and where we need to be when it comes to reaching that goal.

 

TRANSCRIPT:

Evan Kelly  0:04   Welcome to DDA's Encouraging Abilities podcast. I'm your host Evan Kelly. This is where we connect with advocates in the disability community or the community at large and help tell their stories, raise disability awareness and be a supporter and advocate for them as well. For those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond, we support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. So if you can do the math 2022 is actually our 70th anniversary. Now today we are talking about the province's move to a $10 a day childcare system. It's something the NDP has been promising for some time and with the federal government's assistance is moving forward, at least in a pilot project. Child care, of course, is also a vested interest for DDA, we're not just about supporting developmental disabilities, we operate nine inclusive Child Development Centers in Vancouver and Richmond. So our guest today is Sharon Gregson. She speaks for CCCABC, or the Coalition of Childcare Advocates of BC. And she's also part of the $10 a day campaign. This group, of course, has been advocating for $10 a day childcare for some time. So thank you for joining us, Sharon.

Sharon Gregson  1:17   It's entirely my pleasure, especially as DDA operates such high quality childcare program. So I'm glad to be part of your podcast series.

Evan Kelly  1:27   Oh, well, thank you very much for that compliment. Just right off the bat. Yeah, that's right, I mean, there's many childcare providers have been part of this, this pilot program, where you have to apply for it. And there are numerous childcare operators who are now part of this $10 childcare program. We are not yet unfortunately, I think we're going to be doing one of our locations at play house to sort of test that because we'd like to give some feedback as well. So that's sort of where we are with that, just so you know. So Sharon, right off the bat, what really drew you to this kind of advocacy work?

Sharon Gregson  2:09   Like many advocates, I come to it through lived experience, I was a young mother, with an infant and a toddler. And I wanted to go back to university I was in my early 20s. And as a single mom, I was shocked to discover that childcare was neither available nor affordable to a young student like me, and I became an advocate, and an activist overnight. And as my children got older, and my family grew bigger, I continued, and changed my career to align with my advocacy and the importance that I saw for children's rights and gender equity and economic health, for childcare to be a better investment by provincial and federal government. So I've been doing this now for 30 plus years, and my commitment is as strong now as it was when I first recognized the problem.

Evan Kelly  3:09   Well, 30 years is quite a long time to be at this. So and just in a general sense, how's the landscape of childcare doing? Are we doing better now than we were?

Sharon Gregson  3:21   There's a huge, huge change from 30 years ago. So when my two oldest sons were young, there was very little government support for childcare, it was really all about user fees. There was very limited access. It was really considered babysitting, professionals in the sector were looked at as babysitters. And so over the last few years since 2018, there's been a huge shift, both on that the provincial and federal governments to recognize the workforce behind the workforce that is childcare, the importance of a good early start for children, gender equity issues, so yes, a massive change. And really, that's coalesced around the $10 a day child care plan. And we don't talk, $10 A day sites now are not prototype sites. They are now part of the emerging childcare system that is growing in BC and across the country.

Evan Kelly  4:25   Now, so in your view, what's the biggest motivating factor to achieve a $10 day childcare? Are we, is this just simply a monies game? Or is there something more to it?

Sharon Gregson  4:35   Well, if governments were going to make good investment decisions around childcare, because it's the right thing to do for children, families, they would have finished 50 years ago when the status of women report first recommended a national daycare act. And so it's really been the impetus of COVID perhaps, it's been the issues of growing around gender equity. And, frankly, the cold economic issues that have, I think, spurred governments to actually make the investments that are necessary. And of course, we, as advocates, we don't only focus on the economic issues. But we have had to make the economic argument for why this is a good investment for senior levels of government in order for it to start to happen.

Evan Kelly  5:28   Now, in your view, is the BC government's roadmap, current roadmap adequate?

Sharon Gregson  5:36   Well, we always knew it would take 10 years to build a childcare system, and it would take sustained government commitment through those 10 years. And so we're in year four and a half right now. And yes, we have seen a significant progress since 2018. We've seen fees that are lower. We've seen new spaces, we've seen wage enhancement for educators. And so yes, there's been significant and measurable progress. Has government got everything right? No. Are they moving quickly enough? No. Is there so much more work to do? Yes. But we are on the right track now, particularly with a $3.2 billion federal commitment.

Evan Kelly  6:18   Now, so are you pushing to make this full on legislation so that other governments can't overturn it? How much more work needs to be done in this regard?

Sharon Gregson  6:25   So two new pieces of legislation were introduced around early childhood educators, and around Early Care and Learning. And so that was a significant step forward to bring disparate pieces of existing legislation together into two streamlined pieces. There is more to do to embed the rights of children, all children to access services that their families choose for them. And there's more to do around developing the provincial wage grid for early childhood educators, expanding spaces in the public and nonprofit sectors. And of course, dealing head on with the most significant and immediate crisis, which is recruitment and retention of early childhood educators.

Evan Kelly  7:10   Yeah, that's, that's a huge part of it. I mean, not you did mention the provincial government recently created new legislation around ECEs, the Early Childhood Educator act to improve oversight and retention, what in your mind, does that do for that profession?

Sharon Gregson  7:27   Well, it's it makes it clear who can call themselves an early childhood educator, which I think is helpful in the profession. And it also indicates some ways in which credentials can be recognized from other jurisdictions. There is a new nominee program to attract international educators into British Columbia. But we actually need a more robust strategy, we need to think about student loan forgiveness, we need to think about financial incentives to attract people into the sector, incentives to keep people in the sector more than just bursaries and the wage enhancement, we need to have a review of overall compensation. And part of that is the provincial wage grid.

Evan Kelly  8:15   Can you expand on the provincial wage grid a little bit?

Sharon Gregson  8:18   Right. So right now, early childhood educators are only required to be paid the minimum wage plus the $4 an hour Wage Enhancement if their employer has applied and is successful in receiving that $4 an hour. And that is, that only brings educators up to $19.65 or something an hour, which is not sufficient for the level of education and the level of responsibility that goes along with that in the profession. So a provincial wage grid would take into account level of education, whether it's a certificate or a diploma or a bachelor, as well as years of experience in order to ensure that we are competitive with the education system, so for education assistants, for example, where often childcare staff leave the childcare sector to work in elementary schools. And so we need to make sure that the childcare sector is attractive for people to enter into retain, to stay in.

Evan Kelly  9:26   Yeah, and I mean, talking about, you know, money that we were talking about you know, financial incentives for ECS just to crunch a few numbers, I went to numbeo.com. It's a website that compares the cost of living around the world is that this one, the numbers I have from October 2021, so they're a little bit skewed because it hasn't taken into the current rate of inflation or anything like that. But it says the average monthly cost for single person in Vancouver is $1,200 that does not even include rent. And so if you add it add the average one bedroom $2200 plus the $1200, you're looking at $3,400 a month, whereas a full time ECE II can expect to make approximately $47,000 A year before taxes. And that's $3,900 before income tax benefits and pensions, I mean, what, what more do we need to do to tell the government say, 'Look, this is just not feasible.'

Sharon Gregson  10:23   In the Canada wide agreement that British Columbia signed with the Government of Canada last year, there is in the Action Plan, the commitment to develop a wage grid, and in 2020, the advocates along with ECEBC, the professional organization recently representing ECEs, came together and released a report, a wage growth report suggesting then that the starting wage for ECE should be $26 an hour. And for those with their infant toddler and special needs certification, it should be $29 an hour, that's starting wage. And that's two years ago. So we are right now in the process of reviewing those, those figures. And we'll be recommending to government, new starting wages. And of course, starting wages are just the starting place and years of experience would ladder on top of that in a wage grid. So we absolutely are aware as other advocates from across the country, because this is not just a BC problem. Recruiting and retention and low wages are an issue across the country.

Evan Kelly  11:35   Yeah, absolutely. But at the same time, there are obviously cheaper places to live in Canada. Are you seeing a drain from, in this profession to more affordable parts of Canada?

Sharon Gregson  11:50   No, I'm not aware that that is an issue. I know that there are people who might be moving to other parts of British Columbia. I personally haven't heard of childcare educators, early childhood educators moving to other parts of Canada, specifically around us this issue.

Evan Kelly  12:10   Now, what about the current inflation? Is that being built into what you're advocating for?

Sharon Gregson  12:18   Absolutely, yes. So the the wage rates that we're talking about that would be any provincial wage rate would be would be tight to current context. And so as we are looking at updating our wage grid report, absolutely. Inflation is something that we take into account as are the effects of COVID and the demands that are put on the sector. So these things have to be taken into account.

Evan Kelly  12:42   Yeah, absolutely. Now going back to the the actual $10 A Day campaign, like for two kids, for example, $10 a day works out to about $400 a month, you know, from my experience, I've had two kids, they're older now. It's better, of course, but given that the cost of living varies depending on where you are in Canada, do you think this is a little out of reach for some still?

Sharon Gregson  13:13   So you're right, $10 a day is $200 a month. And so the the plan actually call for a maximum fee of $10 a day. And so for families that are low income, or have other barriers, then there could be no fee at all. And in fact, we specify that for families with an annual income of $45,000, a year or less, there will be no user fee at all. So the fee is a maximum of $10 a day.

Evan Kelly  13:43   So in terms of this, this no user fee, is that something that's been in British Columbia already, or is that sort of new part a new part of his program?

Sharon Gregson  13:55   So that is in effect now. So for families that are low income and are enrolled in a toddler program, if their fees are, for example, $1,200 a month, they wouldn't be paying any any user fee at all. That's achieved, that's currently achieved through the affordable childcare benefit, which is an income tested subsidy.

Evan Kelly  14:21   Okay, so that's good. So that's, so they don't, there are no other subsidies that you're pushing for anything like that at this point?

Sharon Gregson  14:27   Well, when we have a truly accessible system, where the maximum fees are $10 a day and families have the access that they need, not just Monday to Friday, nine to five, but for extended hours or to accommodate shift work or or part time work, then we don't need a lot of other subsidies and funding streams for parents to have to navigate. If there's a, an affordable fee to start with, then it's much easier to think about how to make it even more accessible for low income families, or those with additional challenges. When the maximum fee is $10 a day, where it puts us in a different context of affordability and accessibility.

Evan Kelly  15:16   Now, the government is also trying to, or they've said they're going to add an additional 30,000 spaces that the NDP is promising. I mean, it's, there's going to be a workforce issue that I would see moving forward, and where, where are we going to get all these people that are gonna work and support these spaces?

Sharon Gregson  15:39   I just want to correct you on one thing he said as the NDP that is, that is promised 30,000 new spaces, it's actually the government of British Columbia and the Government of Canada in an agreement to make this commitment. So it's not a political party commitment, it is a government commitment. And so we would expect that that would remain whoever is in government, because it was officially signed and is in effect. So you're right. 30,000 new spaces between now and 2026, is a lot of new childcare programs. And that's why I mentioned that the recruitment and retention issue has to be front and center. Because there's no sense, creating new programs and even making them affordable if there's no qualified educators to work in those programs. And so our roadmap to $10 a day, puts the workforce front and center and provides government with some suggestions on an urgent transition strategy for encouraging more young men and women to enter the sector, and ways in which to retain educators in the sector, particularly through that wage growth that we were talking about.

Evan Kelly  16:52   Now, caregiving, and early childhood education, it's largely done by women, how do we attract more men into the system?

Sharon Gregson  17:01   Well, I think as we saw in nursing and teaching, that when the respect and remuneration are lifted up, then it becomes more attractive for men to enter the sector.

Evan Kelly  17:17   Now, more of a broad question, as a feminist organization, what do you feel are the most urgent steps the BC government can take to address gender inequality?

Sharon Gregson  17:28   Right, so that's a great question. And it really for us, it really does center around investing in delivering a $10 a day child care plan. And that, that is multifaceted because that then addresses gender equity, through respect to remuneration, for the mostly women who work in the sector, it creates gender equity for women who need to use childcare programs, so they can fully participate in the workforce and in their communities. And respecting the leadership of childcare managers and directors and those who are in leadership positions in childcare as well respecting their contributions. And so this is, childcare really is front and center for for gender equity on multiple fronts.

Evan Kelly  18:30   Now, we mentioned early on that there's, there's a handful of organizations, or sorry childcare providers that are involved in the $10 a day project right now, are we, are you concerned that that's going to take a long time for everybody to get on board? Are we like, are we seeing like even DDA we're hearing of you know, parents are wanting to jump into our Playhouse and one that's taking part in this sort of creating a bottleneck at others. I guess what I'm asking is, is this short term pain for long term gain? Where some parents are going to spend 10 bucks and others who are going to spend the full price.

Sharon Gregson  19:12   So when the $10 a day sites first started, there were 2500 spaces across the province. Now there are 6500 spaces, and by the end of this year, there'll be 12,500 spaces. So getting to about 10% of childcare in the province will be in 10 day programs. But for families, and this is really important, for families who are not fortunate enough to be in a $10 a day site yet, other childcare programs are going to have the option to reduce their fees to an average of $20 a day by the end of this year through the childcare fee reduction initiative. So it's getting to 10 a day for more families, so hopefully DDA will be participating in that fee reduction initiative. And so you'll be able to reduce the fees in your other programs to an average of $20 a day by the end of this year. Now, that doesn't apply to school age yet, the school age fee reductions come into effect September 2023. But this will be good news for families who are not yet in 10 a day programs. I think it's also important to recognize that the agreement that the BC government signed with the Government of Canada commits to achieving $10 a day child care across the province by 2026. So $10, a day is expanding. And in the meantime, there's the $20 a day average, that will be in effect in other programs if the childcare provider applies to be part of the program.

Evan Kelly  20:50   So from your perspective, what is your focus now, now that we've got a $10 a day Child Care coming in by 2026? That should be across the board. What is your focus moving forward?

Sharon Gregson  21:01   Well, we have to make sure that these government commitments come to fruition and we have to make sure that all the decisions that government makes, moves us in the right direction of the $10 a day system. So the goal is to have a system where childcare is not just a product in the marketplace, it's not considered a business or an industry, it's actually a public good. And that taxpayer dollars are spent in ways that build a public system that serves children and families and serves our economy in the best possible ways. And so that's really a focus, is moving childcare out from being a market commodity, to being a public good. And having a system that all children have access to if their families choose it, it's high quality, where educators are respected and fairly compensated. So all those things are happening at once. It's, there's a lot happening for childcare this year, and in the years to come.

Evan Kelly  22:05   I think that about does it. Anything else to add today?

Sharon Gregson  22:09   I'd love people to go to 10aday.ca. And sign the petition to support this campaign and this work and you're always welcome to become a member of the coalition of childcare advocates of BC.

Evan Kelly  22:22   And I'll add that DDA and their childcare centers are fully behind the $10 a day childcare program and we hope to be fully involved by 2026. You have been listening to DDA's Encouraging Abilities podcast Our guest has been Sharon Gregson from the coalition of childcare advocates of BC and the $10 a day campaign, the topic of course, $10 day child care and the future of early childhood educators. Thank you for joining us Sharon.

Sharon Gregson  22:48   My pleasure. Have a great day.

 

Heather McCain is the creator of www.canbc.org, a disability advocate website born out of need that offers workshops and support for those in the disability community and the disability Queer community. As Pride Month comes to an end for another year, it's good to raise awareness that people in LGBTQ community who identify as disabled have other concerns they often need to deal with.

 

TRANSCRIPT:

Evan Kelly  0:04   So welcome back to DDA's Encouraging Abilities podcast. This is where we connect with advocates in the disability community, help tell their stories, raise disability awareness, and be a supporter and advocate for them as well. Now for those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond. We support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. That means it's our 70th anniversary this year. So today we are joined by Heather McCain, they are the founder of creating accessible neighborhoods or CAN for short, you can check out their website at canbc.org. They also run the chronically queer support group, which is a group designed to offer advocacy and support to people in the LGBTQ community who identify as disabled either physically or cognitively. Now, of course, June is pride month. So I feel it's a great time to talk to Heather about accessibility in our own neighborhoods, from the queer perspective here in the Lower Mainland. So welcome to the podcast. Heather. 

Heather McCain  1:07   Thanks for having me. 

Evan Kelly  1:08   Excellent. So tell me a little, just to tell the audience a little bit about yourself, just right off the top here.

Heather McCain  1:15   Sure. So I am disabled and neurodivergent. And I founded Creating Accessible Neighborhoods in 2005, after my own experiences with ableism and inaccessibility.

Evan Kelly  1:32   And do you know, I might be bouncing around your website a little bit because you just call you call yourself a crip doula. Can you expand on that?

Heather McCain  1:40   Absolutely. Crip doula is a disability justice term for someone who helps disabled people navigate our complex systems, whether that's government, medical, whatever, provide resources, support, and build communities. And it's a, it's a term that is given to people by community, and members of chronically queer gave this title to me. And out of all my titles are just the one I'm proudest of because it is people like myself that I have positively impacted who have given me this title.

Evan Kelly  2:18   So it's a well learned title. That sounds great. And so you started CAN or you know, it's a great acronym for a website, by the way, creating accessible neighborhoods. CAN, you started from your own experiences of ableism? Can you tell me, can you expand on that a little bit for us?

Heather McCain  2:36   So I use the power wheelchair at the time, and I was trying to get about my community. But where I lived in Maple Ridge, the bus came once an hour. And at least half of the time, the bus drivers would lie and say that the ramp was not operating, because they just didn't want to bother with someone in a wheelchair. And obviously, that made it very difficult to get around the community and very hard to find any kind of day when the buses only came once an hour. And I wrote letter after letter to TransLink with no response. And then someone kind of jokingly suggested to me that I should just start my own organization. And after another letter came back with no response, I thought, okay, well, at least look into it and started, CAN, I wrote the exact same letter, but this time was executive director underneath my name and got a response a week later.

Evan Kelly  3:30   Funny how that works sometimes, isn't it? 

Heather McCain  3:33   Yeah, it's not how the system should work, or what you should be required to have before you're paid attention to. 

Evan Kelly  3:41   Yeah, it's a bit of a sad reality in our society sometimes, isn't it? Now it seems, it seems that CAN is, you know, since 2005, has expanded a lot. I mean, you you've got lots of projects. So what are some of the current projects you're working on with CAN?

Heather McCain  3:56   Yeah, so our current focus is on education. We have a series of workshops that we were doing, and they include breaking barriers, crip kindness, disability awareness, disability justice, gender and sexuality, impostor syndrome, and two queer and trans histories, one for BC and one for Canada. And we're also part of a variety of committees. For example, we're working with the Vancouver Writers Festival on increasing the accessibility of the festival. And we're working with the UBC on some focus groups on how to have lived experience more within the curriculum for medical students.

Evan Kelly  4:41   Wow, it's a lot of, that's a lot of outreach. So you offer, obviously offer quite a variety of workshops. Are these open to anyone who wants to learn? Do you bring your own experts in a variety of fields?

Heather McCain  4:53   So what we do is we have facilitators within our organization and we have both private and public. Currently we're doing private, because we're so booked. But we will be adding public in August. And we're looking forward to doing those and having it open to all sorts of people. Currently, we're working with organizations like Fortis BC and Bill Reid Art Gallery, and talking to these organizations to try to improve the equity and accessibility within their organizations.

Evan Kelly  5:27   Now, do you, do you on some of these you bring into the office, you said you bring in some facilitators and some other experts. Do you bring your own expertise to these things? Do you spearhead some of these yourself?

Heather McCain  5:37   Absolutely. So I'm facilitator for quite a few. And we have a co-facilitator, Harmony Bongat, who is a single mum, Filipino, disabled neurodivergent, has, you know, real experience in a lot of these intersectional issues that we need to discuss and say, co-facilitate gender and sexuality, the queer and trans history workshops, they actually created and research. And they're quite excited about those, those came about during the pandemic. And it's been great to be able to share our history more.

Evan Kelly  6:15   Yeah, for sure. So when did you begin the chronically queer group meetings and what inspired you to do so?

Heather McCain  6:21   So the chronically queer group meetings were actually originally through the organization Qmunity, and they were looking for a facilitator. And I started about three or four years ago. Unfortunately, we, I heard from a lot of people within that group, that there was a lot of ableism and inaccessibility within the organization. And so for a year, our group tried to work with the organization to improve accessibility. And unfortunately, that did not result in any changes. And the group voted to move away from that organization until a point at which they are going to center disabled people and accessibility. And so the group asked to come under the umbrella of my organization, creating accessible neighborhoods, and have been running that since. And it's a great group of people. It's wonderful to be in a room with other people who have shared experiences where you don't have to explain yourself, or you're not being told you're too sensitive, or you know, that you shouldn't take certain things a certain way. And you can talk to people about how hard it is to navigate the systems that are working against us.

Evan Kelly  7:36   Yeah, that's definitely an ongoing dialogue. So in what ways right now from your point of view, is BC succeeding in supporting the disability community? And sort of what successes have you seen in recent years with your actions?

Heather McCain  7:51   Yeah, so we have seen some changes through our advocacy to the Disability Program, the increase in what people are allowed to earn on disability, as well as things like crisis funding for someone if they have to move really quickly. There's been a lot of conversations about how to make the system work better, particularly the interactions between people on disability and the staff. And we have heard from members that there have been slight improvements, obviously not enough, and not where we would like it to be. But it's been nice to see some of the policies change. I think there's a lot more room for conversation with BC, we were part of the BC Disability Act consultations. And I think, you know, that's moving in the right direction. I think it didn't necessarily encompass everything that we had hoped for. But the fact that, you know, this is something that government is thinking about is excellent. And part of why we do this work.

Evan Kelly  9:00   Now in a more of a sort of, dialed down sort of way as to how well is BC meeting the needs of the queer community? And when it comes to accessibility, where are we falling short?

Heather McCain  9:12   Well, I think where we're falling short is often we're asking people to divide themselves. And so we have accessible spaces for disabled people, but we don't have accessible spaces for queer disabled people or black disabled people or incarcerated disabled people. And so we really need to look at having accessibility across the board. And I think BC relies a lot on the organizations for disabled people to provide accessibility and doesn't think about that broader community focus. So we definitely need to, you know, really incorporate that intersectional lens in whether it's for people who are queer and trans or whether it's for black indigenous people of color. You know, we really need to make sure that organizations and government understand people with disabilities are everywhere.

Evan Kelly  10:05   Yeah, I read a really interesting sort of meme the other day, and someone had this idea that, you know, creating something that's accessible, doesn't sort of go far enough for humanity at large. It's more about looking at it a lens through a universality, rather than creating, like, oh, we've got accessible building codes. Well, okay, well, that's great. So we're, we're at that point, we're looking at maybe a couple of groups so that they have access to whatever we're building. But what about the idea of just universal lands? Looking at everybody, when we do anything?

Heather McCain  10:40   Yeah, absolutely. And I think, you know, that's one of the things we talk about is that access is for everyone. And what improves life for one type of population improves life for others. So if you make condos and rentals accessible to people who have wheelchairs, you make it accessible to people who have strollers. And so it's really important that we look at this lens of, as you say, universality. And I think one of the most important things that is often missed in accessibility is options. You know, people want to make accessibility be one thing. But to people with disabilities, accessibility means different things. And we need to have options. Because you can have five people in a wheelchair and their abilities within that wheelchair are completely different, and what accessibility they need is different. And so yeah, I think we need to have more conversations about what everybody requires.

Evan Kelly  11:43   Yes, absolutely. Now, you mentioned gatekeepers a lot on your website, can you explain what that is?

Heather McCain  11:49   Yeah, absolutely. So gatekeepers, are people who whether intentionally or unknowingly create barriers to access. And so the organization was founded because of experience, my experiences with gatekeeping, which was a bus driver who drove an accessible bus that had an accessible ramp, who then said to me, that the ramp was not operating, therefore making the bus inaccessible. And so this is really frustrating because disabled people had to fight so much just to get the access on the bus. And then here is somebody who doesn't want to bother with someone who's in a wheelchair, and so he can cut off that access. Another example is that sometimes there are places with accessible washrooms, but you have to walk all the way back to the help desk to get a key. Now, first of all, this is difficult for a lot of people who have mobility issues, and that additional walking is difficult. There are people who don't have evident disabilities and have to talk the people at the help desk into letting them have the key to the washroom. Another example is, we spoke to a couple of universities that lock their elevators, and will only give the access key to certain people and some disabled students were unable to get that key because they didn't fit the image of what the university thought disabled people who need elevator access are. So those are all examples of where there is access, but then people are creating barriers to that access.

Evan Kelly  13:32   Wow. So in 2022, here we are today in June 2022. Are there fewer gatekeepers these days, in your mind? Are we doing better at this?

Heather McCain  13:42   I certainly think that there's more conversations about how people can be gatekeepers. And I also think that there are a lot more empowered disabled people who are willing to speak up when they see that gatekeeping which then allows the organizations and individuals to consider the gatekeeping and, and hopefully to move forward, unfortunately, some are told about the gatekeepers, and still don't do anything. But I think that's been a really great thing is I see so many more people advocating for themselves feeling comfortable to say, I am disabled, and I need this. And I think that really comes from the community support. However, as great as that is, I wish that disabled people didn't have to advocate for themselves so much, that the gatekeepers just didn't exist. And part of that is the organizations doing the work. And we do see a lot more organizations that are actually doing disability awareness workshop. We encourage organizations to have accessibility protocols. And this is something that helps everyone be on the same page, whether it's staff management clients, and that's something that has helped eliminate gatekeepers. Because I think to a large extent, it's just not understanding accessibility and how you're impacting another person's life.

Evan Kelly  15:06   Very true. Now, but for me, I think it goes even a step further and probably for you, too. It's, you know, it's not just understanding, it's like, how do we get people to get past understanding and get towards empathy? That's the biggest one for me.

Heather McCain  15:24   Yeah, I mean, I think one of the biggest barriers is that people are overwhelmed right now, you know, there's so much that's going on with the pandemic in the world. And within diversity, people often are overwhelmed with diversity, because, you know, what kind of diversity are we learning about, and then you look at the disability community, you know, if I focus on people with cognitive disabilities, what about people who are deaf or blind or, have mobility devices, and it can seem overwhelming. And so I think one of the things is, like, really breaking down this information to make it more accessible to people to make people realize the joy of learning, and this is something we really focus on a lot within our gender and sexuality workshop, is like, it's fascinating to hear people's stories. And so that's how we connect with people, is we use our members' stories, their lived experience. And we find that that connects to people better, because when they leave, they may not remember the details, but they do remember how they felt. And they do remember their reactions, and then that helps them to remember to actually make change the next time, because they have someone specific that they can kind of bring to mind, you had this experience. And it's really important for people to understand how their actions impact others.

Evan Kelly  16:57   Yep, definitely. And it's, you know, it's, it's one of those things where, you know, I think that it starts at home, you know, it's, let's take these workshops, let's learn from those who are living these lives, let's empathize with them. But you know, let's be, let's start that at home with our kids and getting them to understand.

Heather McCain  17:17   I think that's great, empathy, however, does have its limits. Because to an extent, empathy is trying to imagine being in someone else's shoes. And, you know, as a non disabled person, it is very hard to actually imagine being disabled. And so I think one of the key things is to listen to people of that identity, you know, people try to imagine what it's like to be disabled. And unfortunately, that's what government has done for so long. And then they make decisions and create policies that don't actually meet our needs. Because they're imagining a life in a different way than is actually the realistic experience. But absolutely, starting at home, make Google your friend, visit your library, you know, make sure that the shows that you're showing your children have different representations. SOGI, for example, has great book lists, and we actually created one on our Creating Accessible Neighborhoods website, that's for zero to six year olds have queer and trans books that are written by queer and trans authors. And we include some books that have disability in there as well. Because yeah, it's really important to move forward with the new generation. And it's been interesting. I am third parent to a child who's five and was in kindergarten this year. And you can see how societal pressures are already starting around language. And it's really important that this work is being done at home. And that, that kids are learning about it from a young age.

Evan Kelly  19:00   Yeah, absolutely. I was super impressed with your website, you've received numerous awards for your work. You're even a torchbearer for the 2020 Paralympic Games. That must have been exciting. Can you tell me about that?

Heather McCain  19:12   Yeah, that was awesome. So at the time, I was on the board for BC disability games, which I had been a competitor in in bocce, and they nominated me to be a torchbearer, which was awesome. And it was quite the experience. I learned that it's very hard to smile continuously as you hold the torch. But it was, it was great because actually what I enjoyed the most out of the experience was afterwards I was in my wheelchair with some friends going to a restaurant to eat after the, my section of it was done, and I had the torch with me and the amount of people who were so excited to see a Paralympic torch. Who knew what the Paralympics were who had attended the Paralympics. And I let anybody who wanted to hold it and take pictures with and it was just great to see so many people aware of adaptive sports and and see how interested they were and how excited they were about the Paralympics. So it was a really good experience.

Evan Kelly  20:19   So I guess you're hoping for hoping we win the bid for 2030? 

Heather McCain  20:23   I have complicated feelings about the Olympics and Paralympics because of knowing how much money it costs and where that money could be used. So I, I wouldn't say I'm a complete Yes in support of it. But I think with anything, if we do get it, you know, I know that it will be an excellent experience, and that it will help increase awareness about disability and adaptive sports.

Evan Kelly  20:51   Yeah. And it's, you know, the Olympics that always is a bit of a double edged sword, isn't it? It's good for some things not so good for other things. So now here at DDA, we use a lot of adaptive tech to help our clients be engaged, help them to communicate, it helps them, let us know what their needs are, some of which we design or build ourselves. I noticed on your website, I thought this was really cool. You designed to double sling to alleviate pain on your back. Because I guess, because of the weight of your arms, that seems really, really cool. Now, are these things that you designed specifically just for yourself? Or do you market these things? Or what do you do with those kinds of ideas?

Heather McCain  21:29   Yeah, so I have arthritis in my collarbones and can lose the use of my arms, if, like with repetitive motion, or if they're down too long. And so that double sling was created to help with that. And I actually did it through the Tetra Society of North America. And I know that they have a database of all the projects that they've done, and essentially, they're their projects, that if you can't find it, you know, in the in the current market, then they'll work with engineers and people to, to create it for you. So they made me a meditation bench that I could put on my wheelchair. They've made me trays for both my power chair and my manual chair, the manual chair had to be able to go in luggage for flights and the power chair had to be able to fold up and be okay with me kind of using my wheelchair as an ATV and being in really rough terrain. And they do these projects on a volunteer basis. And they just happen to have someone who knew how to sew. And so I was really excited. And I'm actually currently in the process of getting, I found some people who are disabled who know how to sew, and they're making me new versions to update it with some new ideas. So that's not something that our organization does, but we very much support the Tetra Society and the work that they're doing and point people to their websites, which have amazing projects listed on it.

Evan Kelly  23:03   That's really great. Now, when you when you look at sort of your life and what your own needs are, even just from your own point of view, do you find like, when you find that you need something, it's relatively easy to find it? Or have it made? Or is this Is that something that you know, becomes another obstacle you have to get over?

Heather McCain  23:23   It's definitely been an obstacle, I've had to be very creative, as I think a lot of disabled people have to be, we're very adaptive. And while we might find something that can be bought, it still needs to be personalized. You know, one of the downsides of having a disability is the fact that things that are available on market are usually so expensive. And so often we don't have the funding for that and have to create a cheaper version on our own. And so there's been a lot over the years that I've had to adapt whether I get the ideas from things that already exist or try to create them myself. But yeah, I'd say it's, it's not always that easy to get exactly what we need.

Evan Kelly  24:07   Now, do you think you know, you mentioned money there. Do you think that the government is not doing enough to provide those kinds of funds?

Heather McCain  24:16   Yeah, absolutely. And I think they're... kind of the narrow criteria of who is allowed to get mobility devices is problematic. For example, I currently am using a walker because it's during the pandemic and I don't have to go very far. But I have a power chair that's now 15 years old and will need to be replaced but because I am walking outside of my home for short periods with a walker, I no longer qualify to get the power wheelchair. And so I think the government is missing a lot of people who need mobility devices with their narrow criteria. I also think that they need more money to make the process faster. We've heard from quite a few people who, you know, it takes nine months to a year to get their mobilities device. And in the meantime, they're sitting at home and unable to go out. So I definitely think that the government could be putting more money into assistive devices, and particularly custom assistive understanding, that is not a one size fits all kind of solution.

Evan Kelly  25:28   Yeah, of course. Now, is that the kind of lobbying you are doing these days with CAN?

Heather McCain  25:34   That definitely is some of the projects that we do. And we look for kind of what comes to us. And currently, our focus right now has been on looking at the, the medical system and trying to get lived expertise from disabled people within the medical curriculum. So that we have advocates who are working on our side within the medical field as well. We hear from a lot of our members who have to fight and fight and fight in order to get their doctor to fill out whether it's, you know, disability benefits, or adaptive equipment, the paperwork that the government requires, and some of our members, their doctors just won't do it. And so we feel it's really important that those medical students learn it from a early stage, so that by the time they are doctors, they can be active and effective advocates for their patients.

Evan Kelly  26:32   So just one last question for you here, Heather. What are your future plans for Creating Accessible Neighbourhoods?

Heather McCain  26:38   Ooh, that's a good one, we have so many plans. One of the main things that we're looking at right now is trying to get our workshops online so that they're available for people who aren't able to make it at specific times. Or we have some people who need more time to process. So if it's a two hour workshop, they need to take it in chunks, or they want to watch it multiple times. So we want to make it as accessible as possible. So that's something that we're currently looking at. We're also looking at partnering with more organizations to move the conversation forward on creating more accessible pride events. And understanding that it's really important that we don't just think about people with disabilities, as spectators, but as active participants, because often, organizations, for example, an art gallery will think of the people who come to view the art, who have disabilities, but not the artists who have disabilities, private organizations will think of spectators, but not people in the actual parade who have disabilities. And so we really want to have more organizations understand that 360 degree view and continue to work with these organizations on educating them and helping them create accessibility protocols. And moving these conversations forward so that future generations don't have to do this work.

Evan Kelly  28:10   Well said. Well, thank you very much for joining us today. You have been listening to DDA's Encouraging Abilities podcast Our guest today is Heather McCain a powerhouse in creating awareness and accessibility. Yes, a powerhouse and support for the disability and queer community here in BC. If you'd like to find out more about them and what they do, you can go to www.canbc.org. Heather, thank you so much for joining us today.

Heather McCain  28:36   Thank you for having me. I appreciate it.

 

DDA talks with Jeanne Hansen who's sister, Tracey McKinley, who suffered mental health issues, died in the heat dome of 2021. Despite new government policy, what can we do to better protect people who can't protect themselves?

 

TRANSCRIPT:

Evan Kelly  0:05   So welcome back to DDA's Encouraging Abilities podcast. This is where we connect with advocates in the disability community, help tell their stories, raising disability awareness and be a supporter and advocate for them as well. For those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond. We support roughly 2000 clients with developmental disabilities and their families and have been doing so since about 1952. In fact, this is our 70th anniversary year. So as we head into summer 2022, we've just passed the first sort of hot weekend, I guess, you remember last year when over 600 people in BC died as a result of the heat dome that settled over the province in early July. The unprecedented weather system showed a lot of vulnerabilities and how the province operates and transmits crucial information to better protect those who can't easily protect themselves. So that of course includes people we look after at DDA. Many people with developmental disabilities such as Down syndrome, can leave people unable to regulate their own body heat. So protecting them becomes very important. And sometimes when people with disabilities or even mental health conditions, can't properly communicate, if something is wrong, so that becomes very problematic. So today we are joined by Jeanne Hansen. Last year, she lost her sister, Tracey McKinlay, who suffered from schizophrenia to the extreme heat and is now advocating for change, for better education and compassion for the most vulnerable people in society when it comes to weather. So welcome to our podcast, Jeanne. It's very nice to have you here. Right from the start, condolences for the loss of your sister Tracey, who you said, just know that today's the anniversary. 

Jeanne Hansen  1:50   The one year anniversary, thank you for your condolences. 

Evan Kelly  1:53   That's, you know, that's very very difficult to take, of course, and we really appreciate you being here. So tell us a little bit about what your sister was like.

Jeanne Hansen  2:03   Gosh, what wasn't she like, she was a pretty awesome sister. She did have schizophrenia, which caused her to have lots of different issues over the years. But she always did it with kindness and humor, very, very witty humor, and love for everybody and anyone. So she was a very kind soul who everybody in New Westminster where she lived knew her. It didn't matter what we were doing, where we were going, if we were shopping, or out for lunch, or just walking around and going to Timmies for a double double. Everybody knew Tracy, everybody had nice things to say to her and about her.

Evan Kelly  2:48   Her illness, schizophrenia, did that limit what she could do in terms of employment? How does she function in her own life?

Jeanne Hansen  2:55   Yes, she did live on her own. She did have support, of course from family and as well as the SIL program, the semi-independent living program and mental health in New Westminster. But the stresses of everyday life that we just face normally she couldn't handle so she didn't have a nine to five job or any job really, and but she did function well in her life that she did live on her own.

Evan Kelly  3:23   Now, you said early in another news piece that the medication she took to battle, her mental illness damaged her kidneys, which the heat exacerbated, which ultimately led to her death. How do we as a society inform ourselves that this could even be a risk, like that might for people that might not even enter their consciousness, as something you need to consider?

Jeanne Hansen  3:44   Well, we certainly didn't have a clue that it would have the effect as quickly and as damaging as it did. We knew she had issues with her kidneys, we would always go with doctor appointments and stuff like that. So we were very well involved with her overall health as well as her mental health. Her kidney function was anywhere between 15 and 20% and had been for quite a few years. So they were doing things to kind of get her ready to the possibility of ever having to have dialysis but she wasn't close to that yet. Knowing what we know now, not really realizing that all these different things can make things worse for people more susceptible for people with the heat, not just kidney but liver damage, high blood pressure, certain medications that you're on can make you more susceptible. Antihistamines, for example, we were talking about allergies coming in and that can make you not feel the heat. Make things worse for you, antidepressants, antipsychotics, certain antibiotics, there's lots of different medications that you should be aware can lead to you having difficulty with realizing what the heat is doing to you. You don't have to have a lot of damage to your body in order for these things to make a difference, and I'm certainly not saying don't take those medications, they serve their purposes. But certainly speak to your doctors and that sort of thing about seeing how the heat can affect you.

Evan Kelly  5:16   Yeah. And she, didn't know she, you mentioned that she lived with an assisted living.

Jeanne Hansen  5:20   Not assisted living, no, she lived on her own. But she did have a group that helped her with living on her own that was semi independent living. So she would be, you know, taken out and shown how to shop for herself and different things like that. 

Evan Kelly  5:38   Right, so there was someone sort of checking on her, in a way. And so there was nothing, there's no red flag or anything like that, at that point in your mind to say that, that wasn't enough to protect people like this, from the heat or things seemed normal? And was this, I guess, was that a kind of a surprise here?

Jeanne Hansen  5:58   Very much so. And it was to everybody involved with Tracey as well, there, there is no one entity, one group, one person, the government, paramedics corner, anybody to blame, in all this, it's either all or none. We need to take responsibility for ourselves. And if we can't, then there's, the people that do caretake for us, our loved ones or family members, the people if we are in any sort of program, where we are being watched, even people who do live in homes that are... have caretakers in that there. We didn't know, we didn't realize how bad it was, we didn't realize that it would be you know, it just never crossed our minds. My other sister Jane and I, we would call Tracy and check in on her and she'd always "Oh, I'm fine. I'm fine, I'm fine." And even the people that lived in the building where she lived, it's a nonprofit run building. And they were doing their damnedest to go around and knock on doors, morning, afternoon, evening, checking on everybody to see how they're doing. And they didn't know and they're not to blame either. But they have the guilt associated with it, too. Nobody truly knows exactly what's going on inside the body. And if someone doesn't have the ability to say, "Hey, I'm feeling this way," or whatever, you know, sometimes these symptoms of heat exhaustion, and heatstroke can be just ignored or mistaken for some issue that they might have physically already. Or they just don't know what to communicate how they're feeling.

Evan Kelly  7:32   Yeah, that's that's obviously the biggest sort of the biggest piece there. So it's clear you don't believe assigning blame is productive, of course. But where do you think we need to be directing our energy instead?

Jeanne Hansen  7:44   Well, I sat back for the last year and just kind of thought of different things, but was waiting to see what would come up out of this report from the coroner's office, what the government might want to do, no point reinventing the wheel, if there's things that are going to be put into place. But there's a lot of gaps in what's come out that need to be filled. A lot of it is just awareness, and trying to figure out different ways to fill those gaps. And sometimes, there's not enough funding, there's not enough time, there's not enough people, there's not enough for the government to do. So it's kind of up to us to take some personal responsibility to try and fill those gaps. And that's what I'm trying to do.

Evan Kelly  8:31   And you're creating sort of I guess we've got a Facebook page up and what else are you doing to try and raise awareness to get people motivated to sort of, you know, maybe look out for each other a little better? 

Jeanne Hansen  8:41   Well, a lot of things like this, media, we've done some reports, some print, some news reports, the Facebook page, email, anybody can reach out and say, hey, what can I do? Can I donate a fan? Can I, I work for an air conditioning company, and I want to see about what we can do to help, or just... it doesn't have to be money. It doesn't have to be anything like that. If you don't have those, maybe you live in a building that is a little bit older that doesn't have central AC or anything like that. And maybe you can volunteer to coordinate door knockers in your building to just go and check on people. It can be something as simple as just putting a signup sheet down in your lobby that anybody can sign up for and say they are they want to be a volunteer to help knock on doors or they want to be put on a list to make sure that someone comes check in on them.

Evan Kelly  9:40   Now you do have a Facebook page do you have the handle for them?

Jeanne Hansen  9:44   It's Tracey's legacy, "T-r-a-c-e-y-s-l-e-g-a-c-y," it is a Facebook group and there is a Facebook page and they'll direct to each other.

Now what is, what can people find on this Facebook page?

Oh just information they can reach out through the Facebook page if they need some assistance if they need some direction as to where to go, what to do, awareness things we do posts about simple things that people can do for themselves and for their loved ones to help stave off the heat to keep their core temperatures down, doesn't have to be 40 degrees outside just as much as 30, 32. And you can start having some issues with heat exhaustion, which then can lead to heat stroke and possibly death. It doesn't have to be air conditioning units in every building. Sometimes that's not possible. I know a lot of people will say things about oh, we need, the government needs to give everybody an air conditioning unit. Oh, you know, it's there's older buildings that can't support it electrically. There's issues with people not understanding how to run it, there's people that are afraid that they run it that now their heating bills, or their electricity bill is going to go up too high, and they can't afford to pay it. There's certain issues with people who do have those, but aren't allowed to use them by their, either their strata or the building manager because it ruins the aesthetics of the building outside. So they don't want to have those. So there's certain rules and things that could be advocated for to make some changes, to make sure people are able to cool down their buildings, just because the temperature cools down outside at night, some of these buildings will keep retaining it like a convection oven.

Evan Kelly  11:35   So there, certainly there's lots of bylaws or whatever rules or strata rules, things can be put in place. But to me, it just seems like you know, we all have, we all have relatives, we all have older people in our lives, we all have people with disabilities in our lives, I mean, 25% of the country, say they have a disability, we've got people with mental illness issues. Seems to me we really, as a society have to be just more aware of these people in our lives. And be more compassionate.

Jeanne Hansen  12:05   Yeah. And the awareness is the biggest thing right now. Everybody's aware of what happened last year, and it's to keep the awareness going that you know, this issue with temperatures getting hotter, and that sort of thing is not going away. And just making sure that, you know, the first thing we should be doing is making a plan. Making a plan for ourselves, making a plan for our loved ones, making a plan for clients and that sort of thing to know, okay, this is the steps we need to take. This is how we need to build the information to get to people that's easy to follow. Things that are easy to do and inexpensive to do to help them keep cooler, and have that plan ready. So that when things do start heating up, they can start enacting some of those plans.

Evan Kelly  12:58   You know, the government has put in a new BC heat alert and response system. Any thoughts on that? Like, I'll just give it the the old list here that number one is they want to coordinate a provincial heat alert response system. I'm not sure what that is necessarily going to entail. 

Jeanne Hansen  13:16   I know they want to put out some sort of warning system that kind of beeps on our cell phones and stuff like that, if there is an extreme heat advisory, that's great for someone like me, that might not be paying attention to the heat and might not be feeling the effects of it that I can go, okay, hey, we've got this plan, and we need to start enacting it. But there's a lot of people like Tracey didn't have a cell phone, didn't go on the computer. She didn't have any, didn't really watch the news. So she wouldn't have really benefited from that. And there's a lot of other people that wouldn't either.

Evan Kelly  13:45   Absolutely lots of the a lot of our seniors don't have the latest tech stuff. So that becomes a communication gap. How do we get that information to them and ensure that they're not, that they're actually using that information and protecting themselves and are we're helping prepare.

Jeanne Hansen  14:00   The kind of a care watch, I just kind of dubbed it instead of a block watch, a care watch where if you set something up in your building, that you can then go around and slip things under the door or put them in the mailboxes or something to let people know, hey, this is what's coming, and the warnings out and if you need any assistance or whatever, then let us know.

Evan Kelly  14:22   Now like I was just going through that list. So the number one was a coordinated provincial heat alert response system. Number two, ensuring vulnerable populations are identified and supported during extreme events again, like that sort of care watch you're talking about. And that is, the care watch is not a government program. That's just something...

Jeanne Hansen  14:41   I came up with right off the top of the head, yeah.

Evan Kelly  14:43   And number three is implement extreme heat prevention of long term risk mitigation strategies. That might, who knows what that might involve might be bigger, bigger picture.

Jeanne Hansen  14:56   I think that's what they were meaning when they were talking about how they want to change the bylaws. So that all buildings built after a certain date have to have central AC and stuff like that. And that's going to be great for anything in the future. But it's certainly not going to change anything for the buildings as they are now.

Evan Kelly  15:11   Yeah. And that's, that's obviously the, the key. And again, how best, how can we better address that communication gap between us and those who are more, more vulnerable.

Jeanne Hansen  15:24   Again, being more aware like that, that warning will go out to the general population. And if you already are aware that there is an effective heat on your loved one, and you have that plan, now already planned for and built in as to what you want to do, then that alert that you receive means you enact it. So you're going physically to check on the person, we were just phoning Tracey to check in on her. We didn't know how hot it was in her apartment. It wasn't till we went a few days later to clean it out that we realize, holy smokes, it's like 45 in her apartment, it was very hot. And we had to keep taking breaks. And and we're very aware, it was, it was more like a convection oven. That's what I keep referring to it. The building in itself, the ventilation, just the windows weren't large enough, it was large windows, there's no reflection tape or anything like that on the outside of the building itself to kind of reflect some of that heat away. So there's lots of different things.

Evan Kelly  16:31   You don't, in your mind find the building owners or anybody partially responsible, or is that something that needs to be addressed?

Jeanne Hansen  16:38   No, I don't, like again, there's nobody to blame. It's, it's what's happened. Now we know about it. Now we know different things that could be done about it. And a lot of times, it's not until an event like this happens, where we really want to kick it into gear, and to say, okay, you know, unfortunately, these poor 619 confirmed so far souls have passed away because of this heat. Now we're aware of it, now we need to take the steps to do something about it. A lot of these buildings where these folks live are nonprofit buildings, you know, they don't necessarily get the government funding, there are different funds that are out there that people could apply for, different grants and that, they're just not aware of it. So now they're starting to learn that they're aware of it and can make applications to get that funding to put the film on the windows, to put cooling centers in the buildings themselves where these people live, the cooling centres are awesome, that's part of the plan for the province to have more cooling centers available. But there's not necessarily, excuse me, a lot of people who will leave their apartment building to go. There's social anxiety, they aren't aware of it, they don't know how to get there, they don't want to go out in the heat to go get it, to go to the cooling centre. They don't know that there are places they could call to get rides there. But even that can have an issue because there was some issues reported to me about companies in that they would be supporting people to give them rides to the cooling centers, but couldn't necessarily pick them up or weren't, the whoever answered the phone wasn't aware of it, that sort of thing. So there's a few different tweaks and things that need to be worked out. And that's going to take reporting from a lot of people who are actually trying to use those services and have issues.

Evan Kelly  18:31   The cooling centers are nice, but you can't stay there for 24 hours a day.

Jeanne Hansen  18:39   I'd like to see more buildings have the cooling centers built in either in their lobby, have a little area that set up to have some portable air conditioning units that can be put down there so people can go down and get some respite from the heat. And then that's a good opportunity to then also have some things that people can read about to learn about what to do personally for themselves if they're able to have a cold shower or have a cold bath. Put on a long sleeved cotton t shirt that's been soaked in some cold water. Where that to cool down have some spray bottles with some water I just learned something interesting yesterday and it was peppermint tea. Somebody told me if you make peppermint tea, and I've been looking into it, put it in the fridge cool it you can drink it as well as spray it on yourself in a spray bottle or put it in the t-shirt and wear that the peppermint will help cool you down which then can help cool down your core temp. So lots of different things that can be done easily and inexpensively for people and that are easy to follow. But the cooling centers being where they're at having misters setup outside so they can go and cool down there too, fans, industrial fans in the hallways to encourage more airflow throughout the building. Making sure that the building has their inspections and that done to their ventilation systems to make sure that they are operating, as they should even have sections created down in underground parking. And that if they have it so people can go downstairs and sit and relax. And even if they had to, could have a cot or so down there that they can sleep in. 

Evan Kelly  20:23   One of the main issues though, was like your sister said she was fine. And that's where I, as a as a group, as a society, sometimes we have to learn that we can't take some things on face value.

Jeanne Hansen  20:38   Absolutely. Yeah. When I am asked the question, who I'm mad at who's to blame? You know, it always comes back to me. I didn't personally go and check my sister's apartment, I didn't realize how hot it became in her little bachelor apartment. And I didn't realize that when she was saying she was okay, she wasn't. And that is the biggest regret. I have an app that I didn't personally go. So the people I talk to, don't just phone them, go, physically go and see what things are like for them. And if part of that means that you then take them out of that and bring them home, where they can be watched and be cooled down and be monitored, then please do that.

Evan Kelly  21:26   Yeah, absolutely. Some interesting things about actually heatstroke and heat, the heat exhaustion, we have this little list here. That's supplied by one of the CDCs. The heat stroke, I thought was interesting. If you're suffering from heatstroke, you've got a high body temperature around 38 degrees or over. Hot red skin, fast, strong pulse, headache, dizziness, nausea, confusion, you could pass out at this point when you've got just heatstroke. And that's different from heat exhaustion. But one of the things that's, that I thought I found was counterintuitive was don't give the person anything to drink. You know, it's one of those things where people, if you just assumed, oh, give him a cold glass of water or something like that. Well, in this case, they're saying, don't do that, call 911 right away.

Jeanne Hansen  22:15   Well with the dehydration, because there's the first dehydration, then there's heat exhaustion, then there's heatstroke, and then there's death. So with the dehydration, if you're already feeling thirsty, you're already dehydrated, pure and simple. When you get to heat exhaustion, it's the body temperature goes up, you use get red, you can feel nauseous, you can have all these dizziness symptoms, you can have a lot of symptoms that sometimes mimic what they feel like all the time already anyway, depending on what their health issues are. Or they're just not realizing it. Once you move into the heat stroke, well then that's when you need more medical intervention and emergency situation and go to the hospital and call 911, that sort of thing. It can, it can cause you dehydrate more if you were to give somebody who's already at that stage a lot of fluids, because they can actually then turns into diarrhea and vomiting and they can dehydrate even more faster.

Evan Kelly  23:19   And within heatstroke confusion. I mean that's perhaps where some of the miscommunication comes in. And the heat exhaustion for another example here, it's the you know, their skin is going to be cold, pale and clammy. So you don't necessarily feel like this person is physically hot.

Jeanne Hansen  23:38   No, if it's hot outside, and they're having some of these symptoms and feel cold and clammy and they kind of stopped sweating. That's when you know you've reached that point that you need medical intervention. Caretakers have to watch out for that stuff themselves, too.

Evan Kelly  23:54   Oh, absolutely. I mean, DDA is an organization that, I mean, we look after, we have numerous group homes where we got two people, 24/7. And we were lucky last year that we you know, when the heat dome hit, we managed to get all the air conditioners that we needed to keep our houses cool, because we have people that cannot, like I said earlier on, cannot regulate their body temperature. So we were quite fortunate that we sort of kept kept everybody safe. But I mean at the moment, with all the changes coming in, do you think the government is going to be doing enough? Do you feel better about where we're going in this direction?

Jeanne Hansen  24:34   The government run buildings are going to have the funding just given to them. I know I was at a bit of an event out in New West and there was quite a few different groups that were there. There was reps from BC preparedness. There was BC housing there, there was the senior society, there was the New West city, there was the MLA office that was there, and we had quite a lot of it interesting conversations. But I know BC housing, they're going to start doing a couple buildings with the film on the outside as kind of like a trial to see if that helps. And then eventually that will hopefully spread out to all the buildings run by BC housing. So there's things like that that have been put into effect for the buildings that are government funded. The problem is running into the the nonprofit run buildings, buildings run by the legions and, and that sort of thing where they don't necessarily have that funding to be able to do that. So hopefully, the government will pull in more money into these grants and make them more readily available. Government isn't always too quick to say, hey, here's some money apply for it. You have to do some searching for it. But they are out there. 

Evan Kelly  25:55   Certainly, there's lots of grants for accessibility. We've seen that come down a lot. I mean, I'm not sure that you know, protecting from the heat falls under accessibility to a point it does. But would you be able to talk about where people can find these grants to help protect themselves? 

Jeanne Hansen  26:16   Google. Google is our friend and sometimes our worst enemy. But yeah, no, Google it. There, they are out there, I do have some links that are on our Facebook page and our Facebook group. So they can also go on there for information, don't have to join up or sign up there or anything like that. Just go peruse it for the information. And there are some grants that they are accepting right now. So they can certainly make their applications and deal with their boards and figure out what they want to do. But there is some funding out there. And then hopefully, just over the next little bit, building up more and more of a network base, to you know, I have people reach out and contact to say, hey, you know, I work for an H-vac company, and we want to see what we can do. Or I work for the company that puts film on Windows, let's see what we can do. Or, you know, I want to make a donation to a building or maybe your church wants to adopt a building of full of seniors that can give them some stuff to set up for cooling centers, to maintain fans and donate fans to organize and help them figure out how to set up the the cooling centers, the misting stations, the contacting everybody in the building and get it going. Like there's lots of grassroot groups that are kind of doing things individually. I like to see everybody who's trying to do the same thing on the same road. So let's communicate to each other and more voices certainly get more attention.

Evan Kelly  27:53   Yeah. So it's, it's unfortunate that I mean, we know that climate change is here. We know there are things happening. There are more extreme weather patterns. And there's been no indication yet that we're headed towards another heat dome. Hopefully not but, and they said it was like a one on 1000 year event. But it still happened. And unfortunately, things like this. It's like bad things have to happen. In order for us to have a wake up call as a society. It just seems like we that's the way humanity operates.

Jeanne Hansen  28:20   Every year people pass away from heat, of course. But it's certainly not the the great number that happened in the short amount of time that it did last year. So that's been kind of the "aha" thing. It's always happened. But it's kind of those things that we become used to and it sort of, we don't really remember it or pay attention to it or anything like that, till it personally happens in your life. And then all of a sudden, you're like, hey, wait a minute. What can I do? Where can I go?

Evan Kelly  28:50   While we were certainly appreciate the advocacy work you're doing now, in the name of your sister. It's definitely definitely worth it. For information, again, is it only on the Facebook page where you go, largely where you're putting stuff?

Jeanne Hansen  29:05   I think eventually we're going to have a website. I just haven't had time to do that. It's all been very sudden that I've kind of been put into this position or forced my way into it. I don't know how else to say it. But it's right now, it's Facebook and email. So we do have an email setup as well. Traceyslegacy@gmail.com.

Evan Kelly  29:29   So Traceyslegacy@gmail.com, you can reach out to Jeanne and it's Tracey's legacy on Facebook. I'm not sure how that's going to Facebook, probably Facebook slash Tracey's legacy kind of URL. 

Jeanne Hansen  29:41   And I think there's a couple others out there. I think one's like a hen party from England and all this stuff, so make sure you're on the right one. Yeah, it'll be Tracy's smiley blue face, or blue eyed faced in her blue t-shirt, that's what you're looking for.

Evan Kelly  29:56   Well, thank you very much for joining us today, Jeanne. We have been talking to Jeanne Hansen about the concerns of heat in BC ever since the heat dome hit the province last year and 619 passed away as a result, her sister Tracey was one of those people unfortunately, we've been talking about the the ways we need to communicate to people to ensure that they're safe to move things forward. So hopefully we can stop this from happening again. Thank you for joining us.

 

Finding a job is a dauting experience for anyone. Now, imagine having a developmental disability. There are many barriers that can prevent you from finding work and gaining independence. Fortunately, there are people like Delia Meinhardt who helps run DDA's social enterprise operation, Jobs West.

 

TRANSCRIPT:

Evan Kelly  0:05   So welcome to Developmental Disabilities Association's Encouraging Abilities podcast. Joining us today is Delia Meinhardt. Now Delia is the Assistant Director of Employment Services at Jobs West. Now, if you don't know what that is, that is one of DDA's social enterprise operations. Jobs West is an employment service that connects clients with developmental disabilities with employers to help the client find and keep a job but also works with the employer to ensure success of the program. Job West fosters inclusion, community and independence for its clients. Part of that success, of course, is ensuring accessibility for everyone involved. So thanks for joining us today, Delia. Now, can you take us through the process of finding a client and getting them a job, sort of, you know, if you're gonna bridge it sort of start from finished?

Delia Meinhardt  0:54   Yeah, sure. So our client referrals come to us through government programs, such as Community Living British Columbia and work BC employment services. We also find potential clients when we're in the community presenting to local high schools and colleges, we will support them with accessing our service. So before our client can get a job, what we do is we do some prep work with them. So we take the time to discover the person's skills and abilities. Identify what type of environments are ideal. So for example, do they prefer to work independently versus within a team? Do they want to work outside versus inside? We assess work skills, provide skills training, and clients attend implement workshops. Workshops, such as how to write a professional resume, ways to ace an interview, dress to impress, how best to communicate with your colleagues, time management, and what are implement standards. After that we move into placement. We encourage clients to participate in informational interviews. So for those that aren't familiar with us, we schedule a time to meet an employer at the worksite to discuss their business, the industry, what skills are required for a specific position. If it's possible, we ask for a tour of the job site. This gives a chance for the client to see the site and whether it's an environment they would like to work at. Our staff meets with employers and discuss their current business needs. And we specialize in customized employment, which is customizing an existing position within a company as well as creating a new position. So for example, of how this can be a benefit for business, would be an employee in a management position, spending their majority of their time inputting data, compiling information or researching. All of those previous mentioned tasks could be allocated to a client freeing the manager to focus on high level business, rather than entry level tasks. Once a client is placed, we provide on site job training, assist with workplace accommodations if necessary. Once a client is fairly independent, we fade our support to follow up supports, which can look like check ins once a week, once a month, once every quarter. If there is retraining required or the job description changed due to promotion or restructure within the business, our staff can step right back in and support the client... support of the client and employer.

Evan Kelly  3:11   Sounds really good. So how many different businesses does Jobs West work with currently?

Delia Meinhardt  3:16   Yeah, so this number kind of changes daily. Everyday we work with employers, whether it's to develop a new position within the company, provide disability awareness or diversity and inclusion workshops. So for example, like last year, we placed 174 clients in businesses.

Evan Kelly  3:31   Wow. Now, what's the process for outreach to businesses? Do you look for specific sectors? Or are there some styles or businesses that are easier to work with than others?

Delia Meinhardt  3:42   Yeah, so our staff tend to not necessarily look for specific positions or sectors. We meet with businesses to understand their business needs and see if we can provide a solution. So our staff are pounding the pavement knocking on business doors, they are tasked to develop business relationships with employers. So we're looking for entry level positions where businesses typically have high turnover in these positions.

Evan Kelly  4:07   Now clients, obviously, some of our clients, or your clients rather, have some very specific and individual needs. How do you ensure accessibility at a workplace? Is there a process that Jobs West goes through or a level of compliance that a business must have in place?

Delia Meinhardt  4:21   Yeah, so when a client starts work, or even before they start work, our staff goes into the business and kind of, kind of speak with the team and management and kind of get a tour of the site to ensure that the site itself is accessible. So accessibility is more than just ramps and large print monitors, although those are common things that make life easier for people. Accessibility is also about attitude and what a person can do versus what they cannot and many small changes for example, like a one hour difference in start time can be really meaningful to someone. So for myself as the employer at Starworks packaging and assembly, we know what it's like to employ people with diverse abilities. Not everyone fits a Monday to Friday nine to five, we have flexible scheduling, allowing part time work and break periods where someone may not be available due to a mental health crisis. Even at Starworks, we use talk to text technology for those with hearing impairments. So something that you and I may take for granted would be starting new job, and successfully complete orientation. We have supported many employers to revise their orientation handbook, so it is more accessible for everyone. So we will revise the document. So it's in plain language minus all the jargon.

Evan Kelly  5:36   So how much of the onus is on the employer to ensure accessibility? How much is on Jobs West, is there more of a sort of a team effort?

Delia Meinhardt  5:43   Yeah, no, definitely, I would say team effort, I guess the duty to accommodate and ensure accessibility. It is teamwork, but it's mainly the business, they have to ensure that they are being inclusive, and they're allowing workers to participate fully. Employers should make every effort to be more accessible. Unfortunately, without disclosing a need for accommodations, sometimes employers won't likely provide those tools. So as part of our services, we can assist in making things more accessible, or even applying for accessibility and accommodation grants to tweak someone's workspace.

Evan Kelly  6:17   Also, the grants, okay, so what are some sort of common issues that you face with employers in terms of accessibility? And how did you overcome that?

Delia Meinhardt  6:24   Yeah, so many employers that we work with or start the conversation about our services have no understanding or knowledge about the population we work with. So part of our role is to provide the information and educate them on what accessibility looks like. So for example, let's talk about the interview process with a potential hire. Before the applicant comes into the office, are we asking them if accommodations are required? Is interview location at an accessible location? So are we looking at lighting, so I myself do not necessarily like sitting under a fluorescent light. Are there even any physical barriers for the person coming into the office? Employers should stick to using common use words and stay away from jargon. So shorter sentences using active voice rather than passive, ask skill based questions rather than complicated behavioral questions. There are alternatives for individuals who may struggle to verbalize their experience and skills. So what we love to do is a working interview. So the client tries out the job for a couple hours. This gives the opportunity for the client to understand the job and gives the employer the opportunity to identify if the client has skills to meet the minimum requirements. Another thing we do is we do a lot of unpaid work experience, this can be a multi day trial of the job to ensure an employee match or a wage subsidy to support with training and accommodations are required. A lot of our employers are hesitant to provide accommodations, they believe it will cost 1000s of dollars, in actuality, the cost is actually less than $500. So most times this can be covered through assistive technology funds.

Evan Kelly  7:58   Now that was you know, so that was my next question. So do you find most employers are relatively easy to deal with in terms of getting employees in place and doing the job?

Delia Meinhardt  8:06   Yeah, so for many of our first time employers, it's a new experience, one that they are kind of uncertain about. So as part of our service, we support employers with next steps: how to place an individual's diverse needs in their company. We spend time educating employers, we hope the message stream down from top to frontline staff, with open communication and similar views on outcomes, it can be a success.

Evan Kelly  8:28   Now, what about, you know, typically developed employees? Do you see any issues sometimes there? Or do you find most people are accepting and welcoming of people with neurodiverse needs at work?

Delia Meinhardt  8:40   I myself don't generally see an issue. I see people who are unsure and don't have much exposure to some of the folks we work with. So with time the employees recognize that the individual is contributing to the workforce, just like them, they have a role to fulfill. So what we see most often is there is at least one person on each team that has a friend or family member with a disability. We identify these individuals and teams and really champion them. They are the individuals who know that people with diverse needs have something to offer. And we see team morale increase, we even see employees adopting training materials that we put in place.

Evan Kelly  9:18   Yeah, absolutely. Now, moving on to the Employer of the Year, each year we give out this Employer of the Year Award, or rather Jobs West does, what does an employer have to show to earn that level of recognition given that we've got, you know, dozens of employers?

Delia Meinhardt  9:33   Yeah, so Disability Employment Month in British Columbia is in September, and we present an employer with the award as you mentioned, it's always difficult to narrow down because we work with a lot of incredible employers. We look for someone that has committed to an inclusive workforce. Willing to champion this partnership with Jobs West, and understanding that hiring someone with a diverse pool of talent is not charity, but it is a business need.

Evan Kelly  10:01   Now you mentioned your 177 people you found jobs for in the past year? 

Delia Meinhardt  10:07   Very close 174. 

Evan Kelly  10:10   Is that a good year? Or is that a sort of an average year for Jobs West?

Delia Meinhardt  10:13   It's our best year over the last 10 years. We had a little dip when pandemic started. But it's just gone up. And even during the pandemic, we got creative with businesses and created and carved new positions that really spoke about high touch areas, sanitization, really catering to those needs.

Evan Kelly  10:35   So, I mean, from your perspective, is this is this sort of a growth industry? You're seeing growth, just sort of every year in the work you do?

Delia Meinhardt  10:42   Yes. 100% I think right now. It's definitely a job seeker market. I think we have a diverse pool of individuals who have  skills to contribute. So it definitely is growing.

Evan Kelly  10:58   That's amazing. And we know through research that having a neurodiverse staff, as you've mentioned, is good for a lot of reasons for morale. We know, the neurodiversity community are very, very hard working and very attentive, employee retention actually gets better, which all helps keep costs down and more. So do you see this reflected in the work that you do?

Delia Meinhardt  11:18   Yes, absolutely. Our clients who seek those entry level positions are loyal. They are longtime employees who bring commitment to their positions. For example, this year, we're celebrating a couple of big milestones. One individual who works at a local community center celebrating 10 years and another working at a Vancouver sports team is celebrating 15 years. We pre-screen applicants for employers, we can essentially be their HR department, employees tell us what they are looking for, and we find that for them. Another benefit as a company, you could be demonstrating corporate social responsibility by promoting diversity in the workforce, which in turn increases employee morale. Employees with Disabilities typically have a lower turnover rate. What else, there's a lot of other things, 86% had better or or equivalent attendance than their peers. It just makes sense to hire individuals with diverse abilities.

Evan Kelly  12:12   So what's one of the most successful job matches you've been a part of?

Delia Meinhardt  12:15   Yeah, I got I guess, two stories for you. One was actually in 2009. We partnered with Starbucks Canada to create the cafe attendant position. So you may walk into Starbucks and you may see someone that's not behind the counter, but people kind of roving in between the tables. Our staff spent a day at one of the busiest Starbucks location in Vancouver with a latte in hand, the staff observed the day to day operations. We recognized that baristas had many different roles, customer service, making coffee, restocking pastries, clean tables, floors, washrooms, dishwashing, and the list goes on. So from there, we saw huge lineups and people leaving the store because they couldn't wait any longer for the coffee. So we propose a carved position, the cafe attendant will take on the entry level tasks freeing up staff to provide customer service and to be more efficient with completing orders. That's just one of them. 

Evan Kelly  13:13   Oh, that's good. We know we like Starbucks. Did you want to talk about the the other success story?

Delia Meinhardt  13:20   Yeah, no, for sure. Um, I guess the other one is we supported an individual to, like they've never had a job before. So we worked on creating a resume, trying to find those experiences through high school. We prepare them for interviews, as well as explore different jobs. After spending time together, we recognized her love for flowers, and her amazing ability to focus on details. When we took the client for a tour at a local grocery store, she was seen spotting expired products on the shelves, in the floral department, she was picking the dead leaves off the flowers and plants. It didn't matter that a client didn't have the same education or work experience as her fellow colleagues. The supermarket was quick to recognize her abilities and hired her in their produce of floral department. So they recognized the benefits of having her on the team. I mean, like how many times have you come home with expired products? Try not to, but wouldn't it be great to have someone just dedicated to ensuring that all the product is fresh, therefore it leads to great customer service.

Evan Kelly  14:22   Now so in terms of the your hiring, you know, the the clients that you work with. You mentioned this last one was their their first job experience, are the majority of people that you work with, is their first job or is there an age range where people have been employed before?

Delia Meinhardt  14:36   Yeah, no, it's quite a large range. We have people coming out of high school with limited work experience. And we have people that actually have post secondary education, lots of experience. A lot of folks come to us because they find it hard to maintain employment, so we support them with that.

Evan Kelly  14:54   Well, that's good. Now do you see society at large getting better at including people with diverse abilities are we, are we playing a game of catch up?

Delia Meinhardt  15:02   Yeah, no, I think businesses are more open to diversifying their workforce. They may not know where to start. And that's where we come in the picture. We support businesses with their diversity and inclusion strategies. So I would say over the last 10 years, I'm using 10. Because I've been at jobs west now for actually more than 10. It's been 15 years, there's definitely been a shift towards facilitating accessibility and inequality in the workforce. So government programs such as work BC, provides free services for people with disabilities to find work in BC. Jobs West is actually subcontractor, and we work with individuals in the Lower Mainland to find a customized employment. There's also other programs the government have put in place like assistive technology, where they fund assistive technology for individuals.

Evan Kelly  15:46   Now, kind of a personal question, is the government in your mind doing enough to facilitate this kind of accessibility and equality in the workplace? Or could they be doing more?

Delia Meinhardt  15:54   I think it's a good start. I think there's a lot of programs right now. And we are tapping into those programs to support people with disabilities.

Evan Kelly  16:04   What would you like to see happening more of or what can society be doing better for accessibility or creating opportunity?

Delia Meinhardt  16:10   I think it comes down to just I would like to see more conversations about what our folks can do for businesses. We spend a lot of time going to businesses and providing workshops such as disability awareness, as well as workshops on how to create tools and accommodations in the workplace. These workshops are usually held over lunch hour, but I just want to see more discussion. More discussions and questions and how we can better be more inclusive.

Evan Kelly  16:38   So how can how can people find out about these workshops? 

Delia Meinhardt  16:41   Yeah, so they can go on our website, and they can contact us through the website, or they can give me a call. And these workshops are free, so we can come on site, or we can do it over zoom and kind of support your team.

Evan Kelly  16:55   Now, the website, of course, is jobswest.ca. Very simple to remember. Just a couple more questions for you, Delia, what got you interested in this line of work?

Delia Meinhardt  17:04   Yeah, so I'm studying psychology at UBC and minored in family studies. I've always wanted to work in the social services sector. So before my time at DDA I was actually working with kids with autism. And I just thought the next step would be working with adults. So after a few years at DDA, I applied for the employment specialist position at Jobs West and just loved the position and program. I kind of got to do a little bit of everything. So I would have to go marketing, I would have to job train people at different sites every day. And I love doing workshops.

Evan Kelly  17:35   So you really like doing this kind of work. So what kind of training, I mean, you mentioned that some of your schooling with schooling, what other kinds of training is required to be part of a team at Jobs West?

Delia Meinhardt  17:46   Yeah, so if anyone is interested in working at Jobs West as an employment specialist we require experience in education in a social science field. Obviously preferred experience with diverse population as well. As for training DDA has a comprehensive online training program where staff can sign up for courses related to customized employment. And our management team also provides hands on training for new staff.

Evan Kelly  18:09   You've been listening to the Developmental Disabilities Association's Encouraging Abilities podcast. My guest today was Delia Meinhardt. She's the Assistant Director of Employment Services at Jobs West. That is one of DDA's social enterprise operations that helps connect neurodiverse clients with employers for success. Thank you for joining us today. 

 

Christie Faye Collins is Autistic. Like many in the disability community, finding a partner isn't always easy. So, she is creating NOMI. A new dating app specifically for the disability and neurodiverse community. www.nomiconnect.net is still in the testing phase and Christie and her team hope to have it up and running in 2023.

 

TRANSCRIPT:

Evan Kelly  0:06   Welcome again to the Developmental Disabilities Association's Encouraging Abilities podcast. We are here to connect with people in the disability and neurodivergent communities to help tell their stories. As much as 25% of Canadians identify with having a disability so there are certainly plenty of stories to tell and awareness to raise. Today we are joined by Christie Faye Collins. Christie is a young web developer based in Victoria, BC. She is also part of the Autistic community and has built a new dating app called Nomi, that targets of disability in neurodivergent communities. So welcome to our podcast, Christie.

Christie Faye Collins  0:42   Hi, Evan. It's so nice to be here. Thanks for having me.

Evan Kelly  0:44   Yeah. Thanks for joining me today. So tell me a little bit about yourself.

Christie Faye Collins  0:48   Yeah, well, my name is Christie. I'm a part of the neurodivergent community. I'm autistic. I live in Victoria. I recently moved here from Montreal a few months ago, and I had grown up on the west coast. So it feels really good to be back home. And right now I'm working on an app called Nomi, which is for the disability and neurodivergent communities.

Evan Kelly  1:11   Now, Nomi, the website for those listening is nomiconnect.net. So that's where they can find you. So you are a web developer, so are you a one person army in this thing? Or tell me a little bit about how you're putting this together.

Christie Faye Collins  1:29   Yeah, so I'm a web developer. But when I first started this company, when I first had the idea, I quickly realized that it would be a lot of work to both be the CEO, and do all of the technical work. And I also would have had to learn a native web development language, which is what you need to know to build an app for the App Store or Google Play. So I personally am handling all of the non-technical stuff. And I have a couple of people working on the iOS app. They're currently working on a prototype so that we can start user testing very soon. And yeah, they've just been absolutely amazing. We get to bounce ideas off of each other and it feels a lot less lonely, having a company, having a thing that I'm working on every day, without having any external kind of validation, or having people who I can talk to you when things get difficult. So that's just been absolutely wonderful. It's a great experience working with them. And they're both really passionate about the project as well.

Evan Kelly  2:37   Alright, sounds good. So to be clear, for listeners, that Nomi is still sort of in the testing in prototype stage, it's not up and running yet?

Christie Faye Collins  2:46   Exactly, yeah. So we're hoping to have it up and running by 2023. Of course, also, if anybody wants to participate in user testing, you can send me an email through the website. But yeah, for now, we are just working on a prototype so that we can really hash out exactly what features people really want and need. And we can meet and hopefully exceed those needs with the first run of the app. And then we'll have it actually running by 2023. That's the goal. 

Evan Kelly  3:19   Now, where did you come up with the name Nomi?

Christie Faye Collins  3:22   Yeah, so I wanted to find something short and unique that people might find fun to say. I was bouncing around a few ideas, thinking maybe something alluding to disability or neurodivergence. But after a while, I was like, "Okay, I'll just figure something out. It'll be a placeholder for now." And I had recently finished watching - rewatching, my favorite show called sense8 on Netflix. And one of the character's names is Nomi. She's a self proclaimed hacktivist, and just an all around amazing and strong woman. And the name also just so happened to sound like "know me," like k-n-o-w-m-e, get to know me. So I felt like that was very fitting for an app that connects people with one another.

Evan Kelly  4:08   Now, what first inspired you to turn your efforts towards a dating app for the neurodivergent community?

Christie Faye Collins  4:16   That's a good question. I suppose I was kind of an amalgamation of a few things. I feel like community has been such an essential part of my life. I am very close to the people that I'm close to, if that makes sense. Like, I don't have very light friendships, I don't take relationships very lightly. And I know that that's true for a lot of people. So I just have a few select people and I honestly don't know what I would do without them. So I really wanted to aid other people in finding that. I feel like for myself, I was really fortunate to have found the friend group I found, I kind of fell into it. I was friends with my sister's friends, and then I found my own friends through them. So I think that that was a wonderful experience. For me it was, it was really lucky, I just felt very lucky that that happened to me. And of course, I developed those friendships and relationships past that point. But for a lot of people, it's more challenging for them to be in social environments. I didn't know that I was autistic at the time. So I tended to go out more, and I didn't realize why I was so burnt out after. So I would go out and do the things, and meet the people, and then be exhausted for days because I didn't realize that I was overstimulating myself. So now it actually is more challenging for me to find friends and develop friendships. Because what a lot of people want to do is go to bars, go to parties, go to the club, and I just can't do that. Can't do that as consistently anymore. So we need to find alternatives. And a lot of my friend group just so happened to also be neurodivergent. So that's another reason why I was so lucky, not knowing that I was autistic and finding friends who were also any array of neurodivergent. Yeah, so I really just wanted to create something that could help people who may feel overstimulated in social environments and find it more challenging to get out there and find friends and relationships.

Evan Kelly  6:36   So I guess it's safe to say that through your own research and experience that others in the neurodiverse community were having these same issues.

Christie Faye Collins  6:44   Yeah, exactly. The more that I learned about neurodivergence and talked to folks in the community, the more I realized that friendship is an issue that is so real for so many people, finding friends, maintaining friendships is a real challenge. And so many people find themselves feeling isolated and lonely because of it. And there's never going to be a clear answer to this problem. But the goal in creating an app for people to build their community is that we can provide a resource for people to intentionally build relationships from a place of common experience. A lot of neurodivergent people also including myself, appreciate structure. So taking a structured approach to dating and friendship by intentionally seeking out people in your community with similar interests could be really beneficial.

Evan Kelly  7:31   Yeah, absolutely. Now not to get too personal in your own experiences in sort of finding a partner, did you find that difficult in your in your adult age?

Christie Faye Collins  7:42   I definitely had more luck dating within my friend circle than online, so I didn't actually find it to be too much of a challenge. Before I knew I was autistic, I inadvertently surrounded myself with other neurodivergent folks who I felt I was able to relate very well with. And it was actually quite easy to start partnerships from some of those friendships. But it was mostly because I was really good at following the romantic scripts. So many of us learned very well established rules around romance and navigating romantic relationships. And I found the romance scripts to be an easy one to follow, personally. I've been partnered now for nearly four years, but neither of us knew that we were divergent - neurodivergent when we started dating, we just had a great connection and understanding right off the bat and looking back, I realized that part of that can most likely be attributed to our brains working in similar ways. But yeah, the real challenge for me in relationships came down to friendships, because I feel like there's less of a well established script for friendships, it's kind of easy to start hanging out with somebody, I used to be a hairstylist, so I learned to be very good at small talk. But when it really came down to maintaining those relationships, I needed people to be very, very clear that their intention was to be friends with me. And we would need to hang out consistently. And I needed kind of a more consistent, like validation and communication with that than a lot of people were able or willing to provide. And I probably also didn't know that I needed that at the time either. So the beginning part of friendships was difficult for me and still continues to be and there's also less of an established script for breaking up with friends as well. Because if a romantic relationship isn't working, you break up you go through that process, there's a bit of a grieving process a lot of the time and then you move on and you find another romantic partner if that's what you want. But with friendships, friendships tend to just fizzle out. One of you ghosts, one of you moves on and it just fades into the background. And that I don't know what to do with. That's a bigger challenge for me.

Evan Kelly  10:11   I understand. So when it comes to sort of putting this, this app and this website together, what sort of feedback have you received? I mean are you hearing from people in your community that are saying, "Hey, this is a great idea. I've tried sort of the online, regular online dating sites," if you will, like, you know, OKCupid, or something like that. Were they having less success through those type of sites? Do you have any any sort of data or insight on that?

Christie Faye Collins  10:40   Yeah, I mean, I have a very simple 123, on a scale of one to three, how would you rate your experience with the dating apps, you've used, and on this specific survey, we don't have too many responses to go off of, but the overwhelming response, so 50% of responders said their experience is a 1 with other dating apps. 42% of responders say that their experience is a 2. And only one person said that their experience is a 3, like the best experience with other dating apps. So yeah, that's kind of more just numbers based. But the real feedback that we've been receiving is that dating apps are not personal enough, you don't get to see enough about the person to make an informed decision on whether or not you want to start a conversation with them even. And the conversations kind of just fizzle out into nothing. And you're left wondering if you should start the conversation again, or just move on. So there's a lot of bad, like communication issues with dating apps. And there's also design issues, accessibility issues. So bright colors, animations, pop ups that come up asking you to pay for different features. And like screen reader issues. A lot of people have problems with dating apps, most people who use screen readers and dating apps together, encounter some sort of issues, not having alt descriptions on the images, not being able to navigate the app easily, but still needing connections. So doing it anyway. And it just ends up being a really draining experience after all that. So yeah, overwhelmingly, the response has been quite negative toward other dating apps. And we're trying to collect all of that feedback in order to avoid the problems that other dating apps have created for people in the community.

Evan Kelly  12:54   Gotcha. So I'm just gonna take a little quick break here right now for a PSA for the engineering health lab at KITE Research Institute. At the University Health Network, they are hosting a virtual conference on the national parks accessibility in Canada, this is a free event that will take place from August 23 to the 25th 2022, you can visit their website to register or submit an application as a speaker if you'd like, that's www.parksaccessibilityconference.ca. So that's all about making sure our national parks are accessible to everyone. And just a reminder, we are speaking with Christie Faye Collins, she has developed Nomi, a new dating apps, we're talking about online dating for the neurodiverse community. So obviously, starting a business like this is not cheap. I mean, you're doing a lot of the legwork yourself, are you are you doing this all on your own dollar? Are you seeking outside investment to make this happen?

Christie Faye Collins  13:52   We are seeking outside investments. So at the moment, we are bootstrapping the whole thing. We're just putting together different bits of free software, anything that we can access for free or virtually free. And that will actually get us to a place where we can present that to investors. So once we have our functional prototype, we'll be able to say hey, this is exactly what we're going to create. We've done user testing, we know that people need this, and then they'll be able to invest knowing exactly where their money will be going. So that will hopefully be happening soon. Living is not cheap. So I will need money very soon anyway. So yeah, that will definitely propel us in the right direction once we have investment.

Evan Kelly  14:50   So this is really meant to be a money making venture for you. This is going to be your job and your profession.

Christie Faye Collins  14:56   It will be, yeah. Many startups don't have have actual revenue real income for a couple of years. So we'll have to ensure that we can sustain ourselves for the first couple of years. But eventually, we will be making revenue off of this. And we're also planning on hiring, so far, most of our team is disabled or neurodivergent. And we'll keep up that trend throughout our whole hiring processes. So the internal team will be compiled, comprised of the community who tends to have the lowest income in Canada. So yeah, we'll want to have enough money to be able to pay fair wages to our disabled neurodivergent employees, and for me to make a living, and hopefully be able to give back to the community in a big way as well.

Evan Kelly  15:52   Now, here's a sort of a $64 million question, what about typically developed people or those people who don't identify with a disability or anything? Can they join? And if not, how do you, how do you make sure that there's only people on on the site who identify with these groups?

Christie Faye Collins  16:14   Yeah, so that was actually the question on our previous survey, as well, I had assumed going into this that neurodivergent, and disabled people would not want a neurotypical able bodied non disabled people to be a part of the app, because some people don't feel safe around people who are not a part of their community, and as a minority community safety is our primary concern. So I put the question out there assuming that the response would be no, it should just be a space for us. But we had a huge response in favor of having all types of people a part - to be a part of the app. So that's really lovely. It's, it's great that everyone wants to intermingle, socialize with each other. A lot of people gave personal feedback that they want to meet allistic people, they want to meet non disabled people. They just mostly want to be a part of a community where they're the majority for once. So yeah, they will be able to use the app, I suppose it just comes down to whether they want to be a part of it. So they're more than welcome to join, they can definitely be a part of it. Some people, there will be an option to just show users, just show other profiles that are similar to yours. So if you identify as disabled, you'll have the option to view other disabled folks. That's kind of what we're trying to navigate right now. So if you don't want to see people who are not, quote unquote, "like you," that's okay. That's something that you can do. But the default will be that you can view everyone who's using the app, and everyone who's using the app can view you as well.

Evan Kelly  18:10   I guess those like, how would you screen that? Like, how would you be sure that someone signing on signing up is a member of one of those groups?

Christie Faye Collins  18:19   We can't, it kind of just comes down to partially trust, we're also going to have a profile validation, but just to ensure that the person who created the profile is themselves. So we're not going to gatekeep for disability or neurodivergence, it will be kind of an honour system. So if you are neurodivergent, in the signup process, you can say I'm neurodivergent, if you're disabled, you can say you're disabled, if you're both you can say both. And then otherwise, there will be an option for not neurodivergent or disabled. And then from there, it will be at your own discretion after you filter for users, quote unquote, "like me." So let's say I'm autistic, I would select neurodivergent in the signup process. And then when I start using the app, I can filter for other neurodivergent people. There won't be like different categories, at least not yet. Because we do want to keep users' identities as private and safe as possible. So just using the larger umbrella terms, I'll be able to see other neurodivergent users, and then I will make the decision whether I feel safe meeting up with them or not.

Evan Kelly  19:41   Right, kind of pretty much just like every other dating website, I guess there's there is a bit of an honour system, you got to you know, unleash a little bit of trust, I guess. So, is the app going to be designed for a global audience, do you have visions of making this in multiple languages?

Christie Faye Collins  19:56   Yeah, yeah, definitely. Right now we are only releasing to Canada, we're going to do it on a kind of rollout basis hitting the biggest cities first and then expanding to the whole country. And then we want to expand to the States, that would be our next international goal. And from there, I definitely want it to be global. I don't know exactly what that looks like yet. But that is the ultimate goal.

Evan Kelly  20:33   Is this going to be free to join to start with? Or is there going to be a monthly fee, or is there going to be like ads that you can run to generate? How do you plan to generate revenue? I guess is the main question.

Christie Faye Collins  20:46   Yeah, we're playing with a couple ideas right now, I feel like the so the main business models or payment structures that a lot of apps are using at the moment is called freemium. So you have your free version, and that's heavily restricted. And then you have your premium features that you can pay for on top of the free version that will not be as accessible to lower income users. So if you, if to make the same amount of money, as let's say, Bumble, we would need to have our payment structure be free, and then the premium is $29 monthly. That's what Bumble's structure is. And that's just not accessible to anyone. I don't know how people pay that much for a monthly subscription to a dating app. So what we're thinking right now is a Pay What You Can monthly or yearly subscription. We feel like that would discourage unsafe users from accessing the app easily. And we feel like if everyone pays, everyone will be able to participate equally in the app. So everyone will have equal opportunity to find connection, rather than some people having a better opportunity to access connection than others. It will be very affordable, we're thinking around $5, that would be kind of the average payment would be $5. And that would sustain us and our team and hopefully allow people access to something that could be really valuable for them.

Evan Kelly  22:32   Did you have any unexpected challenges that you faced in developing an app like this?

Christie Faye Collins  22:37   Two main things, safety, of course, is our main concern. In terms of safety, we have a few established features and kind of attitudes, I guess if that's the right word to use, I don't think that's the right word to use. But I will explain. So, in terms of safety, we will have anonymous user reporting the ability to flag profiles that contain content against our guidelines. Eventually, we will either not allow photos at first or if we can, like photos within the chat when you're messaging with somebody until we can block unwanted pictures while chatting because that's a big problem for many people. Having the identity and profile verification before being allowed to interact with users will be a big one as well, because bots are a thing. They're mostly annoying, but they can be harmful, there can be scams. So we want to make sure that the person using the app is who they say they are. And the ability to block users, consistent moderation of the app. Just any other suggestions that people have, we're very open to it, we want to establish as many features to keep our our people safe as possible. And the other thing pertaining to safety, we'll be having a few videos and guidelines, and just general recommendations for keeping yourself safe outside of the app. So there will, of course be recommendations for keeping yourself safe and navigating the app itself. But outside of the app, we want to ensure that people are protecting themselves as well. So partnering with different organizations who have videos around consent and around establishing boundaries, and how to meet up with someone safely how to meet up in a public place and if they want to take you away from that public place, what to say or what to do. So just having a whole slew of guidelines to help users navigate interactions in general, and especially navigate interactions safely will be really big. And of course, accessibility, which I've mentioned before, that will be a challenge in developing. And that's why so many apps aren't accessible. Because it costs more money, they don't see the fast revenue response to making their app accessible. But if they made it accessible, the people who needed that accessibility would use their app. Makes sense to us. Apparently, it doesn't make sense to a lot of app creators. So yeah, making it as accessible as we possibly can constantly adding more accessibility features, and taking feedback really seriously from people who need more accessibility in technology will be a huge thing for us as well.

Evan Kelly  25:56   Yeah, I mean, accessibility is so important, you know, especially for an organization like ours. You know, I think we're about to refresh our own website. And we're, you know, that's the number one thing, we've got to make this website accessible for everybody. So I'm going to hit you with one last question. And then I'll let you go. From your perspective, has the cultural attitude towards people with disabilities changed in the last few years? How is that looking from your eyes? 

Christie Faye Collins  26:24   Yeah, I mean, I feel like a bit of an imposter answering this question. So I'll do my best to only answer to the extent of my knowledge. But I know that we have come a long way in terms of disability justice in the last few years, in the last decade even. And I know that we have a long way to go still. But I really think that media has given us a more consistent exposure to different bodies and minds and ways of living. And that has been embraced by mainstream media in a way that it never has been before. We started celebrating disabled models, TikTok also gives us a chance to hear directly from disabled creators in a way that we never have been able to before. And I think that's really beautiful. We still, however, are not at the point of creating media from a fully collaborative perspective, like mostly pertaining to mainstream media. So that's a huge missed opportunity. Because if you're going to create something about the disability community, or claiming that it's for the disability community, you need to talk to disabled people. Like that just makes sense to us. Yea, right? But it's still a huge problem where we're not being consulted about media about us, nothing about us without us holds true. But so many media creators are still creating content for allistic, non disabled viewers, without consulting disabled people. And we haven't yet reached the point of many disabled and neurodivergent people, or a majority of disabled and neurodivergent creators being celebrated for their own independent contribution to the world. Everyone's also familiar with, quote, unquote, "inspirational stories of disabled people living their lives," that leave viewers feeling warm and fuzzy. But those videos and stories tend to increase the stigma around disability more than anything. And it doesn't actually inspire real change in how we view the world and how we approach disability. It doesn't actually make people turn inward and look at their own biases, and stigmas around disability that they hold that they may not know about. So you can watch a video of somebody getting dressed and be like, "Oh, wow, that's so beautiful. Go them for existing." But that person is literally just trying to exist. So I think that with media, we have some beautiful aspects. And we also have a lot of negativity that we need to work through. But for the most part, obviously, we've come such a long way in disability justice in our own mindsets and exposure to different people. And overall, I think that it has changed for the better. But of course, there's always more work to be done.

Evan Kelly  29:28   Yes, that's true. And I think you know, with people like you jumping on board and creating opportunity for people in the disability community to connect with each other and build meaningful relationships, that can only push this forward. I think it's great. And I applaud what you're doing.

Christie Faye Collins  29:45   Thank you. Yeah, I'm really hopeful that it will help people, that's the whole idea. I want to know that we're helping people so we have a survey that if anyone's interested in they can fill it out on the website, and that will help us continue creating this for the community and not just what we think the community needs. So yeah, we're really hoping to help people and create an impact on our community in a big way.

Evan Kelly  30:24   And that website of course, is nomiconnect.net. You can take that survey there. Today we have been speaking with Christie Faye Collins. She is the developer of Nomi, a disability and neurodivergent dating app. Just to be clear, it's not up and running yet. They are still in all their testing phases and they hope to have it running by 2023. So Christie, thank you very much for joining us today. Hope we can raise some awareness for you.

Christie Faye Collins  30:54   Thank you so much for having me.

 

Nathan Shipley was born with Cerebral Palsy. Today he is a public speaker and does not see himself as disabled. DDA reached out to him during National AccessAbility Week to talk about his life and what it means to build accessible communities.

 

TRANSCRIPT:

Evan Kelly  0:05   Welcome to the Developmental Disabilities Association's Encouraging Abilities podcast. Here we are on national accessibility week in Canada and we're connecting with people in the disability community chatting about their experiences, maybe what's working, what's not, and what we can all do better to promote accessibility and inclusion and hoping to raise a little awareness for the disability community. Joining me today is Nathan Shipley, a self advocate who has cerebral palsy and uses a wheelchair to navigate the world. He has a website called Rollingwithnathan.weebly.com. Thanks for joining us, Nathan. I'm happy you could be here.

Nathan Shipley  0:40   No problem at all. My pleasure. Yeah.

Evan Kelly  0:43   So what do public awareness events, like the national accessibility week mean to you?

Nathan Shipley  0:50   Um, good question. Thank you. I would say, always it's really good because it always raises awareness. It's always good to raise awareness. Especially to make places accessible is always important. And we're making good progress. But always having awareness weeks like this is always important.

Evan Kelly  1:24   So do you believe that weeks like this are helpful in generating public awareness?

Nathan Shipley  1:29   So yeah, I believe they're helpful in changing the narrative, however, like I was joking with my support aid earlier,  it should get to a point where there shouldn't have to be a national accessibility week. I mean, those, those are important and cool, all that stuff. But it should be, it should be just something that people should be aware of eventually, and most people are, fortunately, but it's always good, you know, always room to improve. Nothing, unfortunately, in the world is ever gonna be perfect. I don't think. As much as we try, right?

Evan Kelly  2:17   Yeah. Yeah. And you're in your 20s. Now. So, you know, obviously, you've been dealing with cerebral palsy your entire life, you've been in a wheelchair for that, for that time. Do you feel like things are getting better for the disability community?

Nathan Shipley  2:33   Of course, I would say in the last four or five years, there's a lot more awareness around, you know, building buildings. So they're not just... accessible is good. Being accessible is really good. But what they need to think about, and we will talk about this, is, making places accessible are good. But when they actually build the building, building it, so it's something called universal design, universally designed, and it's really acceptable, because accessible is good, but if you build it universally designed, it would save you money in the long run, because you won't have to renovate, you know, all the features will already be there. And that's a place where we're already going. So that is good. I would say the city of Surrey is a is a good example of that. They made a proclaim, they proclaimed last year, or this past year, I don't know when it was, that all civic buildings will be built to the gold standard, the ranking of the Rick Hansen Foundation meaning that there'll be no barriers to access, which is good. Does that make sense?

Evan Kelly  4:04   Yeah, that's, that's a really, really nice concept. I mean, for you know, for decades, since, you know, we've been around that whole idea of accessibility was was sort of, you know, good enough, I guess. And so when you enter something like that, where you have this concept, and it is a concept, there's this, this, this idea of universal design, in everything we do, is really maybe just a bigger, global perspective for the community at large. I really like that.

Nathan Shipley  4:34   Yeah, I mean, that's the whole goal of the Rick Hansen Foundation, is to instill that universal design principle, so that when they build buildings, they already think about that. They don't have to go in and, and spend like 200, 300, 500,000 dollars in the future, to build, you know, renovate. I was at a workshop yesterday for national accessibility week, they were saying 80% of the buildings that are built now will still be around twenty years from now. So it's not just now it's building for the future.

Evan Kelly  5:17   Yeah, so right now, from your perspective, what are the biggest issues you see, when it comes to accessibility?

Nathan Shipley  5:24   I would say that, it's not just, accessibility is good, but there's a lot of issues, you know, around housing, it's good, you know, building these houses, but, I mean, building these buildings that we were just talking about, but if you don't build, you know accessible, housing, that's affordable, and decent, then there's is no point, because where are all of us gonna live? You know, but I would say, the other main thing is the awareness.

Evan Kelly  6:06   Housing definitely is, you know, is an issue, especially here in the Lower Mainland, where it's so expensive, you know, I mean, we have we have homeshare people here who, you know, who get paid a certain stipend by the government to support and care for people in their home, people who have extra space. And that's for generally for people with cognitive disabilities. And, but it's, it's people make more money just renting their house out to regular renters or even Airbnb. So it'd be the problem becomes even bigger, just because of the cost of living here.

Nathan Shipley  6:44   Yeah, I mean, I recently, I don't know if you want to discuss this more in depth later. But I will say that, even like me, living in my own house is great, like the house I have now is great. Because I have my own, you know, I'm on my parents medical plan, etc. But even like looking for accessible hotels, because I recently started you know, wanting to go away for a couple of weekends here and there. Finding an accessible hotel is great. And everybody, everybody's definition of accessibility is great. Like everybody's - pardon me - everybody's definition of accessibility is great, like, but I'm in a wheelchair. So my definition of accessibility will not work for a blind person. So there's multiple, like... deafness, what works for a blind person definitely won't work with somebody who's deaf or hard of hearing. So that's important.

Evan Kelly  8:00   Yeah, I mean, thing things even like, like a round doorknob can be a challenge for somebody, instead of just like a lever, where you can, you know, use a different part of your arm. It's those kinds of things that I think sometimes the general public just, you know, it's not that they're ignorant, they just don't necessarily think about that. And like something accessible could just be as something as small as opening a door that we just seem to take for granted.

Nathan Shipley  8:26   Right. That is also that's very important.

Evan Kelly  8:30   Now, in terms of technology, tell me a little bit about the technology that helps you make your life better.

Nathan Shipley  8:38   Yeah, so I, I have had you know, I had the Tetra Society, build phone holder, and so that my phone can be on my chair for safety. I have a Google Home. Thanks to the Technology for Living, you know, that Google Home that I actually hook up to Google Nest, so that I can see actually, who comes to my door and so all that, you know, minor things, expensive things. Keep in mind that technology is already always expensive. But all these expensive things, they make a huge difference.

Evan Kelly  9:35   Yeah, like companies like Apple and Microsoft, they're, you know, they're developing apps all the time that become, become assistive and make, you know, independent living possible. Like you say, Google Nest. I mean, iPads are, you know, just changing the world in more ways than just accessing information.

Nathan Shipley  9:55   I mean, like, I have an iPhone and I can only - I have cerebral palsy. And I only have the use of my left hand so I can use, you know, the button to activate in theory. But then it'll be like, text so-and-so. And it will text, it may come up with some unusual words, or some swear words, but it'll work with practice. But it'll work. But the point is that the technology is there. And I would say, you know, it's not just iPhones, computers, etc, but wheelchairs, like I have a power wheelchair, thankfully that technology was generated years ago, but now they have chairs that, you know, you can, you know, smart homes, they'll be able to control your own home, like your whole entire home, you know, thousands of dollars later, but the technology's there, you know?

Evan Kelly  10:58   Yeah, exactly. And it's like, in terms of that technology, it's becomes easier to scale, doesn't it? Like you've got, you've got one sort of program, which has a bunch of code and whatever, but then replicating it again, becomes cheaper, so it becomes even more accessible. But I mean, when you look back 10 years ago, how has technology changed your life? Has that been a big part of it for you?

Nathan Shipley  11:23   Yeah, well, I would say that I was lucky, lucky enough to be born in did be born in the 90s. And I was very fortunate to be born into a world where technology was coming. I mean, back then, there wasn't a lot of technology, but it was coming. It's expensive. It was expensive. But all these things and people don't realize, you know, if you spend a little bit more now, it may be, you know, cheaper in the future.

Evan Kelly  12:02   Yeah, hopefully. When it comes to all the, you know, the technologies and the phone holders and things like that, that you need to get through your life. How, how much of that, are you out of pocket for? How much of that does social programs cover? How much do medical plans cover?

Nathan Shipley  12:20   Yeah, so in terms of the ministry only - though, I got to be very careful what I what I talk about here - in terms of wheelchairs, the ministry will only fund, you know, the bare minimum power chair, so I can get my chair and get around, you know. All the rest of it, would come out, you know, luckily, my parents have a very good medical plan. So, any advice out there will be, you know, make sure you're getting a medical plan. But that's a side note, kind of a joke, but seriously, make sure you find a good medical plan. But the chair I'm sitting in right now, was $16,000 so, the government paid for a little bit, and then my parents medical paid for a little bit, but even that, we still had to pay a little bit out of pocket. I just got a phone that I still had to pay, the ministry covered a little bit. And we still had to pay out of pocket a little bit. So it's a little bit complicated, and I don't really know how much you want me to get into, because I could spend hours teaching you about that.

Evan Kelly  13:50   I'm sure you could. Um, but I guess I guess that's the question. Does BC have room to improve its care for people with disabilities?

Nathan Shipley  14:00   Yeah, well, I mean, what I would say is that BC is one of the more progressive provinces as it comes to people with sorry, repeat so over that against my apologies, BC is when the more progressive provinces as it relates to, you know, treatment of people with disabilities, care, support, etc. But there's always, there's always room to improve. And, you know, there's all this research now, not so much people with physical disability but more seniors, there's more research that indicates to seniors and not too much people's physical disabilities, but also the same thing as they want people with disabilities and with disabilities and especially aging, to be able to age in place, that aging in place essentially means to be able to stay in their home as much as they can. 

Evan Kelly  15:22   Yeah definitely, is that a big concern for you? Like, how does your future look to you?

Nathan Shipley  15:28   Well, I, I will say, going back to the previous question, my apologies. Thankfully, I'm on the CSIL program, which is choice in supports for independent living, the choice in the supports for Independent Living, which is a good program, but I will say, they will only cover medical, like medical needs, aka, you know, going to the washroom, and you know, brushing teeth, and etc. But as you know, and all your listeners will know, and as I know, life isn't always about, you know, showering and all the personal care needs. So, for instance, if I wanted to go swimming, I would need two support workers for safety. But I can't, I can't do that. But swimming is important for my therapies. So I kind of sometimes have to choose, oh, do I have enough funding now to do this? Or do I not, and I'll trim it. We can have a debate about funding, that will be another podcast, that would be another podcast, which we don't have time to do that. We don't have time to do that at the moment. But I would be more than happy to come back and join you again, if you wanted to have a much longer podcast about planning specifics, etc. But that's basically it in a nutshell. But outside of the CSIL funding that because I live in my home, my parents and have to, you know... when my workers leave they take over, which they love doing it, but my mom, she's really good at it, but she is older, and a lot of people with with physical disabilities, their moms end up you know, busting their shoulders, with my mom has a wrecked shoulder, she's got tendinitis, all those things, and migraines and you know, all those things. So that's what I mean is if you, if they provide more funding, which I know is tricky. But it all goes back to what I was saying earlier, is if they provide more now than it would provide more mental and physical wellness, so that it would cause the medical system a lot less in the long run.

Evan Kelly  18:24   Yeah, that makes sense. Well, let's, let's shift the conversation a little bit here. So tell me a little bit about your business around education and public speaking.

Nathan Shipley  18:33   Yeah, so the business Rolling With Nathan you mentioned the website off the top. And so what that is, is I originally, prior to COVID to this was 2019, after getting the business going, I wanted to go into elementary and high schools to educate them about, you know, accessibility and people with physical disabilities, all kinds of you know, disabilities, etc. But then COVID hit. So with the advice of my family and support teams, I then pivoted to speaking to medical students like nursing students, people in healthcare assistant programs, nursing, and Doctors, and thankfully, I've been able to do it virtually so not just in BC but all over Canada. And thankfully all the feedback has been very, very positive. And and they often asked me to come back because what I find and I've worked with, and I still work with, a lot of nursing and medical students when they find a job like working with me very important as they go into the medical field. They say "Oh, you know um," people graduated, they tell me, "Oh, I wish you were around when I was in school." Because the thing that I hear is, a lot of people can learn. Like, you can learn a lot of things by a textbook. But until you hear from somebody who actually receives it, and until you actually do the care of a patient? You know, it's totally different.

Evan Kelly  20:27   Yeah, that definitely would be true. If so, when you when you speak to a group or someone, what are some of the key messages that you want to get across to people?

Nathan Shipley  20:37   That that's a, that's a good question. Basically, what I want to, what I basically want to do is I want to basically, because they talked about my surgeries, my medical treatments, etc. But what I would say is that I talk about my nursing, medical treatments that I basically want to instill, you know, with this kind of empathy, kind of make them realize, you know, how to communicate with people with disabilities, you know, how we can feel pain a little bit differently than other people, because our pain tolerance might be higher, it's a minor thing, but in a medical setting can be very important. I will say, nursing training today is a lot different than it was like a few years ago, even. So even doing that, and the way the schools train now is a lot different. And I can tell you, that a lot of the young nurses that are just graduating now, they're very, they're very enthusiastic and passionate about what they do. You know, the older generation one, there weren't as much education, you know, around disabilities and you know, pain scale. There was a little bit, but all of it provides better education for them, which in turn, provides better care us. I'm sorry that was a long answer.

Evan Kelly  22:22   Long answers are good ones. I'm going to finish with one more little question here, sort of a statement that I thought was really powerful. I can't remember where I read it. It's either on your Facebook page or on your website that you don't feel disabled. Can you speak to that a little bit?

Nathan Shipley  22:41   Right. Yeah, I think what you're referring to is, I don't feel disabled, it's more differently abled. What I mean is that a lot of people nowadays are like, "Oh, poor," well not so much to me now, they think I'm really cool. But the older generation, they haven't seen people with disabilities as much. They used to it being in instituted, like, people with disabilities being instituted, whether physical, cognitive, whatever it is, right. So my theory is that I'm differently abled, yes, I can't walk. But, and I can use my hands, but I have a very, very good, I have, I can use my voice very well. I can, I can do a lot, a lot of things and I told other people, just because I can't walk - I can't walk yes, but like, I can do some things better than, you know, some able bodied people can.

Evan Kelly  23:59   That's very true. Even just you know, having a really good conversation is difficult for some people. But I think that's all the time I'm going to take up. I really, really appreciate talking to you, Nathan. And really, thanks for joining us today.

Nathan Shipley  24:14   Oh, yeah, and just before I go. Just before I go, sorry to cut you off. Something very important that my fabulous support worker has shoved some prawns in my face here, to remind me to, in relation to the housing question, I really encourage people to watch a movie on YouTube called Laura's story, uh, Lauren. Sorry it's not Laura, her name is Lauren, and she, I don't know if some of you listeners might be familiar with unity and harmony and all that stuff, but there's a documentary on a lady named Lauren. And it's basically about a housing project for people with intellectual cognitive, I'm not sure about physical disabilities, but they were basically going to build housing for people with disabilities, while also including able bodied people as well. And that project was denied but that documentary is also really good at illustrating the housing shortage. Sorry my pronounciation isn't the greatest today, but I will say that, for all your listeners, it's on YouTube, it premiered at the inclusion BC conference last week, but that is a really good illustration, you know, how the housing shortage is very important not just for able bodied people but for people of all abilities as well.

Evan Kelly  26:16   And that was called Lauren's story? 

Nathan Shipley  26:18   Yeah, Lauren's story is on YouTube. It's also, if you guys go on to my Facebook page Rolling With Nathan, if you type that in on Facebook and you scroll down there is a YouTube link, you can watch it there. It's only 20 minutes but it's the best documentary I've seen about housing so I highly recommend that as well.

Evan Kelly  26:49   Yeah, that sounds really good. And thanks again to Nathan Shipley. We'll definitely go check out that video. You have been listening to Developmental Disabilities Association's Encouraging Abilities podcast, again our speaker - or our guest today rather, has been Nathan Shipley, a young man with cerebral palsy is a staunch self advocate and public speaker bringing messages of hope and inspiration to the world. Thanks for tuning in.

 

May 29th to June 4th is National Accessibility Week in Canada. We sat down with Keegan Newberry, DDA's Assistant Director of Assistive Technology, to discuss what's happening in the community and business world to help facilitate accessibility for people with developmental disabilities.

 

TRANSCRIPT:

Evan Kelly  0:05   So welcome to Developmental Disabilities Association's Encouraging Abilities podcast, of course, we're here to tell stories and chat with members of our neurodiverse community I'm your host, Evan Kelly, the Communications Manager here at DDA. Today we are chatting with our very own Keegan Newberry. She is our Assistant Director of Assistive Technology here at DDA, which means she uses a bunch of different things or applications or adapt devices, adaptive devices, rather, to really help our clients communicate, have fun and learn. And one of the reasons she's here today is because it is national accessibility week in Canada. So we're doing a couple of podcasts just based on that. So right off the top Keegan, maybe you could just tell me a little bit about what you do here at DDA.

Keegan Newberry  0:51   Sure. Thanks for the lovely intro. So what I basically do at DDA is I allow our clients to be as independent as possible. And I do that by looking at what they want in their day to day activities, trying to give them the best sort of lived experience by removing barriers. And that often means introducing different technologies to help overcome barriers that we have for them to access the community or to interact with friends.

Evan Kelly  1:24   So what got you interested in this line of work?

Keegan Newberry  1:27   I came from the high school system of years ago as a high school teacher. And I was working with a primary, primarily ESL demographic group. And while I was teaching a social studies class, and writing my exams, like a high school teacher usually does, I came to the realization that with my exam, am I actually testing for their social studies knowledge? Or am I testing for their ability to read English? And that really kind of made me look at what barriers are present in our everyday lives that we don't even consider. And so after finishing my year at teaching, I decided to go into special education. And so I could help individuals with developmental disabilities to sort of specifically target those barriers that are kind of hidden in a lot of things that we do. 

Evan Kelly  2:23   So did you, in terms of your high school teaching, you then launched yourself into, in within a high school, helping people with neurodiversities maybe or?

Keegan Newberry  2:34   I went actually to the elementary system, specifically, because I wanted to work with individuals who had complex needs, I think a lot of the resources that we have available tend to be for people at either ends of the ability spectrum. So for individuals who have complex needs, such as multiple diagnoses, or developmental disability plus a motor impairment or speech impairment, they're... the tools needed for them to overcome these barriers are much more complex; it involves a lot more creative problem solving to get around it. And that's where I really saw my, what I was doing, having a direct impact on the clients I was supporting, and for me, that was the most rewarding,

Evan Kelly  3:26   Fabulous. We're in a, you know, a digital age, of course, and technologies, you know, is getting, you know, making a lot of our lifestyle easier in a lot of ways. And you know, and I see you're working around here at DDA, you know, you're reviewing apps and a whole bunch of other things. How is technology, is it making your job sort of easier, or more creative, or how's that working for you?

Keegan Newberry  3:47   Technology has become more accessible. And because of that, it's being embedded into phones and iPads and other devices as base features, which allows for a lot of the tech that we've been using to be more compatible sort of across the board. That has sort of resulted in lowering costs, which is huge, for some of the accessibility tools that we have out there are thousands of dollars. And those costs have dropped dramatically in the last couple years. I think 10 years ago, eye tracking software was the biggest newest thing. And you'll be talking seven to $10,000 to have it set up for one individual. And now I can go on to the app store and download eye tracking software for free. It's just there. 

Evan Kelly  4:44   It's just a huge leap, isn't it? It's amazing that you can go from this sort of this big concept to, here, it's ready readily available. No problem. 

Keegan Newberry  4:52   And cost is a huge barrier when you're talking thousands of dollars. So I think that's been the biggest change with technology, is being able to work with clients, work with families and say, here's an app, it's not even 99 cents, you can go download it right now.

Evan Kelly  5:09   Yeah, that's amazing. I saw I saw a video just yesterday, you know, it was again talking about accessibility week. And it was this young, young man, or a boy rather who, you know, obviously had had motor skills and or issues and couldn't move his arms or his legs. And they had this eye tracking software, which helped him select musical notes. And he was like playing along with this thing. And, you know, I'm a musician, I know you're a musician. And it's, to see something like that and see that sort of level of inclusivity, where someone who doesn't have the use of their arms and can contribute creatively, it was just absolutely mind blowing. And like you said, like, 99 cents, we can make these things happen. It's unbelievable. 

Keegan Newberry  5:52   It's come even further than that, you have to come out and check out the music section in the AT lab, we had all sorts of fun stuff like that.

Evan Kelly  5:59   That's awesome. Well, we'll get the video on there as well. So the with the technology do I mean, do you find it easier to find solutions to problems or that you might be trying to solve with respect to a client?

Keegan Newberry  6:11   I like to describe the demographic we're supporting as being square pegs in a round hole world. There's not a one size fits all. And unfortunately, a lot of the supports that are out there have been developed with that idea of well we'll create one thing and will work for everyone. If anything, the diversity of new technologies have come out have just sort of made more sizes out there for us to choose from.

Evan Kelly  6:39   And so the next question, I guess, with advances in tech, can you give me an example of where you've seen something like more of a profound impact on a client or a group of people?

Keegan Newberry  6:50   I think, not necessarily an advancement of technology, but an awareness of how assistive tools can help. Not just people with disabilities, but everyone seeing things like fidget tools becoming very normalized. I hate using that word, but very popular in the media. It makes it easier for individuals to access that technology. And because it's not just this really small demographic, who's now using accessibility features on their iPads or needs a fidget device while they're sitting in a classroom. There's more choice out there, and it's easier to get to.

Evan Kelly  7:35   Yeah, that's a good thing. Just hop onto Amazon, if you need something. Now, this, you know, I think you mentioned a little bit about this. But does the tech typically cater to a broad category of disabilities or there's more specific designs that suit specific conditions?

Keegan Newberry  7:50   The tech that's out there right now, there tends to be a lot on either end of the spectrum, there is a ton of technology for individuals, especially on the autism spectrum, who are independent or semi independent in community. There's also a ton of technology for individuals who require significant assistance with their activities of daily living, significant sensory supports for them. The biggest challenge, and that's kind of where I come in with AT, is finding that halfway in between that is, they have a tool that's developmentally appropriate for their needs, but that's also age appropriate for their needs. And we're really lacking that middle ground. And often that means finding things that need to be repurposed or redesigned. Which involves a lot of creativity on my part to find the right modifications to make it right for that client.

Evan Kelly  8:50   Right, you've kind of got to be a bit of an engineer at the same time, I guess. Now, pardon me. COVID, I know like that, that is hurt a lot of technologies and people with their ability to get things like microchips and supply chains have all been cut off. How has that affected your office at this point, in the last couple of years?

Keegan Newberry  9:10   We've lost a ton of our vendors, which has been a lot of the tech that we get in is coming from small companies. And I would say about 50% of our vendors went under with COVID, which is terrible. Some of these, I remember looking for the specific sensory bracelets a couple of weeks ago, and they're not made in Canada anymore. I had to order them in from the UK to get them here. So that's been a huge challenge and some things we can't get in at all. So we end up having to buy things in pieces, and then sort of recreate the different tech kits or tools that we've used in the past in our own lab.

Evan Kelly  9:58   Ironic, it's a bit of a step backward to try and move forward, I guess. But in terms of those small sort of businesses where you're, you know, you're finding specific things, are you finding there's real growth in that area, there's a lot more businesses coming? I think there's a lot more awareness in terms of, certainly in terms of autism, and, you know, other developmental disabilities and people are, you know, inclusion of course is a driving force for DDA, it's a driving force for this community. Are you seeing a lot more small businesses and people coming up with ideas and people coming up with things and, and creating, you know, things that we can purchase to help? Is there, is that a real growth industry do you think?

Keegan Newberry  10:38   There definitely is growth in that industry. I would say that about 60% of all of the tools that I currently have out, that clients are using, were not actually developed to be used for people with disabilities. They were assistive tools that were developed for neurotypical individuals that... I was on the internet one day sort of trolling around different websites, and looked at that and said, "Hmm, you think you've created this, but what you have actually created is this really cool assistive tool." And so we're often repurposing it.

Evan Kelly  11:19   Yeah, I look at the like things like fidgets spinners, you know, that to me, they were very popular with with my kids, when they sort of first came out and popular with a lot of people. But it wasn't, I don't think they were necessarily designed with people with autism in mind. You know, even though that became something that people could focus on and sort of have fun with. So is, to me, that was a primary example of that.

Keegan Newberry  11:47   Well you think about, they weren't, they were designed, yes, as a toy, or as a fidget. But the skills that are actually required to use a fidget spinner requires the fine motor control, to have that pinch point to hold the center, the gross motor control to be able to spin it, have an understanding of cause and effect. What happens if I hit my hand against this? And then, because it's a toy, it has this built in reward system. So really, it's a teaching tool for a lot of individuals that we can use. And that's where we're finding a lot of the different AT that we're actually using is people not realizing what they've created yet and how it can be used.

Evan Kelly  12:34   Yeah, that's amazing that you, you've just, you just hit on like a few different points where, you know, from my office, I might not even think about it like that, to me, it's this funky thing that spins, it feels like sort of gyroscopic and, you know, slightly entertaining, because I'm a very fidgety person I can sit in with a fidget spinner while I do something else. But then to look at it as this learning tool and this cause and effect thing is really quite fascinating. What about upcoming technologies that you're eager to get your hands on anything on the horizon that looks cool?

Keegan Newberry  13:05   Brain computer interface, 100%. In the last couple of years, there has been some really incredible things that have been able to be done, especially they were originally designed to support people with Locked In syndrome. So we can process literally what their brains are doing, what different neurons are firing in their head, and convert that to text, convert that to speech through a computer. And there are a lot of different companies who are working on it in a very prototype sort of type level right now. But when we're thinking about, especially about assistive communication, a lot of our individuals have shown that if we give them the right tools, they might be technically nonverbal, but if we give them a way to communicate, whether it's through pointing at picture symbols using an iPad, using sign language, that they have the desire to communicate, which means that the more tools that we have, that basically removes the stress on the actual client to have to learn that tool, the more they'll be able to communicate with their friends, their family, their community, and the more independent they're going to be able to be.

Evan Kelly  14:26   That would be amazing. I think it's, you know, people like Elon Musk are working on these kinds of interfaces. I don't know what any other companies that are doing it, you might know that but that to be able to communicate with people who are nonverbal or, I mean, it goes beyond developmental disabilities, people with injuries or brain injuries or who may be in a vegetative state, but could still communicate would be unbelievable, unlocking worlds. 

Keegan Newberry  14:49   Exactly and that's where a lot of these technologies have been developed out of. And this is me, again, sitting on the internet being like, ooh, two years from now. I can totally use this.

Evan Kelly  15:02   Exactly. So I mean, what are some of the bigger companies that are that are doing stuff? I mean, we're seeing a lot of companies, like I look at a lot of stories like the latest one from Reebok, you know, people bringing in assistive footwear or more accessible footwear for people, what are some of the bigger companies that you're seeing developing stuff when it comes to inclusion?

Keegan Newberry  15:28   Apple has definitely been in there the last couple of years, not as much with their own development, but working towards making their devices more compatible with different assistive tools, which has been a huge change from even five years ago. We have Logitech in there, Microsoft, Microsoft released a really cool app actually called seeing AI a few months ago, I think it would have been now, that literally, you can take a picture of a room, and it'll process it and tell you what is probably in that picture. So people with visual impairments, they can have their environment described for themselves, just by using a free iPad app. There are smaller companies that are continuing to produce technology. Go Talk is sort of one of the big names that we see and have seen for over 10 years. And then Proloquo2go TouchChat, they develop AC, so assistive communication apps, they're still there lingering in the background, and they still have great tools. But definitely seeing bigger things coming out of Microsoft and Apple in the last couple of years that have really shown promise and have really sort of taken that big step forward, especially in the mainstream.

Evan Kelly  16:55   Yeah, it's really the digital realm that sort of really seems to be pushing this envelope. But what areas of disability care would you like to see more development of tech? I mean, it's, it's one thing to get the apps and it really helps with communication, but is there something else, there's another area of disability that we need to, would like to see more focus on?

Keegan Newberry  17:17   Community access tools, I think a lot of people don't realize how many barriers that can be. When I used to teach about barriers in community I used to have my students walk through a building and see if they could find all the different barriers, things like round doorknobs, if you have a gross motor impairment, they're extremely hard to turn. You might have a ramp, which is fantastic, almost all of our buildings are accessible now with ramps. But if you're a wheelchair user, and that is a very steep ramp, it's really challenging to push yourself up some of them, like I get winded walking up some of these ramps. Even other things like having communication systems, there's some amazing communication systems they're developing, where video can read American Sign Language, which is, there's such a big community that uses ASL to communicate. But it's so closed off for a certain aspect. So finding tools that you could walk into a coffee shop and be able to sign on a camera and it would translate for you would be incredible. So all of those like little barriers that really are big things that need to be overcome for a lot of our clients to be truly independent in community.

Evan Kelly  18:52   Now, I've seen a couple of other things, I know some people in the disability community are developing apps themselves, like map apps, to map out what is, what parts of your community are accessible, what parks are really accessible. So I see that growing quite a bit. I've seen quite a few of those things, but it's one of those things like how do you, particularly here in Canada when we get snow and and the thing is when it comes to accessibility, people, even like myself, would take for granted that, you know, where there's a layer of snow that can be deadly for someone who's got limited mobility, because you can't see what's under it. Like if there was some way besides, you know, getting people to constantly clear their driveway. Is there some way to sort of, I don't know, find out what's underneath the snow and some sort of radar, who knows, but it's that, that to me was one of the biggest things I've noticed in the past year that a lot of people just don't seem to understand that even just a light layer of snow becomes a really impassable thing for people particularly in a wheelchair.

Keegan Newberry  19:53   And that's the importance of community awareness, more than once I've been out and crushed gravel driveways that have not been packed down, I've definitely gotten a wheelchair stuck in those before. But the more awareness we can bring to those kinds of barriers, hopefully, the more people will do to reduce them in our community. It's not something that we can just put in a single law or bylaw in and they're all going to magically go away. This is something that needs to become common knowledge across members of our community. So they're each doing their part to make sure that their small little piece of their community is as accessible as possible. So the greater community can be accessed by people with disabilities.

Evan Kelly  20:42   Now, is there some way that I mean, you sort of look at this stuff daily, of course, is there some way that people can stay up to date on the latest assistive technology? Or is there like a sort of a receptacle website with all different things updated? Or how do people find out about assistive technology in general?

Keegan Newberry  21:03   Probably one of the best websites is RESNA. So that's the Rehabilitation Engineering and assistive technology Society of North America. Their website is fantastic with new updates, they have forums to chat about different assistive technology ideas. And that is sort of one of the ones that I use, that is truly dedicated to assistive technology. Other ones wired.com, they have some incredible stuff on there. But again, it's things that aren't traditionally assistive technology, that people just have not realized what they created. I'd say I've found a good number of stuff actually on Kickstarter. There's lots of really good ideas out there that just need someone to sort of look at them from a different perspective to realize how impactful they could possibly be on this demographic we're supporting.

Evan Kelly  21:59   Exactly. Now, in terms of, you know, funding for things like Kickstarter, Kickstarter obviously, you're looking for sort of crowdsourcing. But is the government like of British Columbia, the federal government, even municipal governments, do they offer funding for projects such as these? Do you see, do you see them getting involved enough? Or are they, are they okay?

Keegan Newberry  22:19   It's... the funding is extremely limited, unfortunately. When you look at it, it's just a very small fraction of our population, if you're just talking numbers. So the funding is going to the greatest good, unfortunately, a lot of the stuff that we're seeing, where tech is coming out of is out of universities who have been able to get funding for special research projects. In fact, that's where some of the really cool brain computer interface technology is coming out of. So we're looking more down the academic road, then really down the government funding road to see where that new tech is coming from.

Evan Kelly  23:05   Right. Okay, um, do you have anything else to add to this? I mean, we've been covering a lot of things. Anything else you want to discuss in terms of assistive technology, what we're doing here at DDA, we've got, you can certainly come to our website develop.bc.ca, where Keegan puts together a lot of tech reviews, assistive tech reviews, it's on our Star newsletter and the like, on the website. 

Keegan Newberry  23:30   I'd say the biggest misconception about assistive technology is everyone thinks it's all about the iPads. A very small fraction of what we do is about iPads. It's the really little things from finding a spoon that counter interacts tremors for someone who has Parkinson's, finding special grips that can go on doorknobs, to make them easier to open. There's a lot of really creative problem solving that happens on the small scale. And it's those things that are making the biggest difference beyond iPads and the sort of high tech stuff that we're seeing out there.

Evan Kelly  24:14   So don't just rely on the digital realm. It's there's a lot more to it. Well, thank you very much, Keegan. This has been DDA's Encouraging Abilities podcast, our guest has been Keegan Newberry, our Assistant Director of Assistive Technology here at DDA. Thanks for joining us today. Alright, I'll see you all soon.