Encouraging Abilities Podcast

Kello Inclusive: Edmonton-based Modeling Agency is Starting to Get Noticed

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.
 

DDA Talks Accessibilty with Brad McCannell

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.
 

His Name is Nicholas

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 Prompts a New Awareness Campaign

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
 
00:06Time 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
00:29is 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.
00:59She 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
01:29to 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.
01:52I 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.
02:21working 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.
02:38This 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?
03:04Yeah, 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...
03:32So 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.
03:59Yeah, 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?
04:15I 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.
04:45So 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...
05:14these 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.
05:43of 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.
06:09is 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.
06:39helping 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.
07:08that 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.
07:36Now, 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.
08:06the 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
08:36The 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.
09:05dirty 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...
09:34can 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.
10:03I 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.
10:33cultural 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.
10:58Selena, 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.
11:27undoing 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.
11:55So 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...
12:23who 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.
12:53Yeah, 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...
13:20left 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.
13:47Absolutely. 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.
14:09and 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...
14:36information 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.
15:07Yeah, absolutely. And it's it's it's one of those things where, you know, we operate.
15:14Jobs 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.
15:44to 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...
16:01It'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
16:31to look good and get re-elected, but are these steps in the right direction? Is it enough? I ask that to either of you.
16:40Sorry, 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...
17:08the 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.
17:32to 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?
18:02Sure. 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
18:31that 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.
18:59This 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.
19:18poverty 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...
19:38that 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
20:08of 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.
20:35instances 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.
21:03which 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.
21:33talking 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.
21:59because 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.
22:23enshrined 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...
22:47we 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,
23:11But 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.
23:38cerebral 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...
24:04stool 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.
24:32And 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...
25:02uh 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
25:27super 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.
25:51And 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.
26:20Yeah, 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.
26:50of 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...
27:20ending 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
27:50in 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.
28:06that 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.
28:32To 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...
29:01our 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.
29:28to 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.
29:58And 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.
30:28of 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.
30:51is 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.
31:13lived 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
31:41Which 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.
32:09Sounds 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.
32:35similar 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.
33:01I 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.
33:26Yeah, 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.
 

A Chat with Dr. Jaimie Borisoff: On the Forefront of Wheelchair Design

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
 
00:04Welcome 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.
00:34can 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
01:04Director 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
01:34wheelchairs, 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?
01:54I'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
02:16the 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...
02:45I 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?
03:15Great 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.
03:30This 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.
03:47And 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.
04:12As 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,
04:39every 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.
05:02And 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.
05:26We 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?
05:56Yeah, 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
06:26We 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?
06:39Yeah, 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,
07:05that 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.
07:32I 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.
07:57So 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.
08:20Now 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,
08:48And 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,
09:18projects 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?
09:29Yeah, 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.
09:58to 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.
10:24As 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.
10:52And 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.
11:22to 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
11:52I 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?
12:00And 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.
12:30manufactured 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
13:00It 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.
13:20marketing 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
13:48at 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
14:18for 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
14:48people 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
15:15We 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.
15:42And 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.
16:12Absolutely. 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...
16:27don'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...
16:54in 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
17:23I 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...
17:43it 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
18:13There 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.
18:40And 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.
19:01with 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.
19:23and 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
19:52And 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.
20:15Well, 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
20:45in 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
21:13young 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,
21:43probably 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.
22:11And 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.
22:32So 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?
23:02mobility? 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.
23:17If 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.
23:36So 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.
24:06And 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,
24:36charred 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.
25:01So, 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.
25:28you 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
25:58coming 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.
26:26That 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.
26:56in 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...
27:25it'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
27:54I 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.
 

Transforming the World One Building at a Time With Karin Pasqua

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
 
00:05Thanks 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.
00:18find 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
00:48access 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
01:18environment 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
01:48that 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
02:16In 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.
02:45organizations 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
03:13more 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.
03:26talking 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
03:51meet 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.
04:21you 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.
04:49the 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.
05:02that 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
05:32to 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
05:57Often 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.
06:26You 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.
06:49Yeah. 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?
07:16Can 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.
07:41Now, 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.
08:09and 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...
08:37come 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,
09:05we 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.
09:30The 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.
09:59Now, 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...
10:26being 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.
10:55At 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.
11:23So 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?
11:51That 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?
12:19Yeah, 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.
12:44to 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.
13:07That'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.
13:32Yeah, 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.
13:54you 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?
14:21I 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.
14:50It 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?
15:20Okay, 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.
15:46an 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.
16:09You 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...
16:37on 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...
17:06abilities 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.
17:34Right? 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.
18:00As 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
18:28organizations 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.
18:52Now, 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...
19:16there 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.
19:43So 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.
20:13With 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.
20:42If 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.
21:01Absolutely. 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?
21:31Oh, 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.
21:59be 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.
22:28on 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
22:57the 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.
23:25up 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,
23:54My 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.
24:23And 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.
24:47Who 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?
25:15Hmm, 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.
25:41and 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
26:10This 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.
26:39it'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...
27:06from 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.
27:35the 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.
27:46on 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?
28:15One 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.
28:43And 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.
29:07Once 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.
29:32Well, 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.
 

70 Years of Doing the Impossible

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
 
00:05Hello 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.
00:20So 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
00:50B 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.
01:20big 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
01:50She 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.
02:16So 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.
02:45uh... 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
03:11and 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.
03:40Sometimes 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.
04:10And 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.
04:38At 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,
05:04I 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?
05:33She 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.
06:03And 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.
06:20and we lost Bobby.
06:22I 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.
06:52be 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?
07:13Well, 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...
07:34problems. 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
08:03The 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.
08:32And 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.
08:58There 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.
09:28How do you measure success in your position? Was that where the board members guided? Or do you sort of?
09:39look 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.
10:09when 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.
10:37to the point that we had regular town halls and got yelled at a lot. And a lot of the families were quite correct.
10:45So 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
11:15plans 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.
11:41There 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.
12:07So 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.
12:25There 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.
12:44And 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.
13:09The 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
13:39over 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...
14:05people 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.
14:28The 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.
14:51So 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
15:21It 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.
15:35Now 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.
15:59right 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.
16:29and 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...
16:57registered 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.
17:21And 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.
17:51It'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...
18:15to 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.
18:39Of 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...
18:53organizational 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.
19:22So 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.
19:52you 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
20:19Now 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.
20:49that 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
21:05So, 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
21:32and 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.
22:02their 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,
22:32I 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...
22:58you 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...
23:19allied 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.
23:49isolated 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.
24:10we'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.
24:34And 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.
24:59That 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.
25:29I 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?
25:41Well, 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.
26:11because you're dependent. And...
26:14some 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.
26:44My 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.
27:14And 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.
27:43So 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.
28:08in 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.
28:34you 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
28:57I'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...
29:26an 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.
29:53We'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.
30:07All 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...
30:36you 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
31:01That'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.
31:30and 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.
31:54and 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
32:24this 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.
32:42Sounds good.
33:12Association. It's a fantastic piece of work put together by our filmmaker David Poorsier and it's really worth checking out. Bye for now.
 

A Chat with Dr. Laverne Jacobs - Canada’s First Member of the UN’s Committee on the Rights of Persons With Disabilities

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.
 

DDA Talks to Author and Professor Deborah Stienstra About the Current Disability Rights Landscape in Canada

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.
 

Music Therapy - A Universal Language

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.