Accessibility Needs to be Universal: A Chat with CANBC Founder Heather McCain

Heather McCain is the creator of www.canbc.org, a disability advocate website born out of need that offers workshops and support for those in the disability community and the disability Queer community. As Pride Month comes to an end for another year, it's good to raise awareness that people in LGBTQ community who identify as disabled have other concerns they often need to deal with.

 

TRANSCRIPT:

Evan Kelly  0:04  
So welcome back to DDA's Encouraging Abilities podcast. This is where we connect with advocates in the disability community, help tell their stories, raise disability awareness, and be a supporter and advocate for them as well. Now for those who don't know about DDA, we are a community living agency that serves Vancouver and Richmond. We support roughly 2000 clients with developmental disabilities and their families and have been doing so since 1952. That means it's our 70th anniversary this year. So today we are joined by Heather McCain, they are the founder of creating accessible neighborhoods or CAN for short, you can check out their website at canbc.org. They also run the chronically queer support group, which is a group designed to offer advocacy and support to people in the LGBTQ community who identify as disabled either physically or cognitively. Now, of course, June is pride month. So I feel it's a great time to talk to Heather about accessibility in our own neighborhoods, from the queer perspective here in the Lower Mainland. So welcome to the podcast. Heather. 

Heather McCain  1:07  
Thanks for having me. 

Evan Kelly  1:08  
Excellent. So tell me a little, just to tell the audience a little bit about yourself, just right off the top here.

Heather McCain  1:15  
Sure. So I am disabled and neurodivergent. And I founded Creating Accessible Neighborhoods in 2005, after my own experiences with ableism and inaccessibility.

Evan Kelly  1:32  
And do you know, I might be bouncing around your website a little bit because you just call you call yourself a crip doula. Can you expand on that?

Heather McCain  1:40  
Absolutely. Crip doula is a disability justice term for someone who helps disabled people navigate our complex systems, whether that's government, medical, whatever, provide resources, support, and build communities. And it's a, it's a term that is given to people by community, and members of chronically queer gave this title to me. And out of all my titles are just the one I'm proudest of because it is people like myself that I have positively impacted who have given me this title.

Evan Kelly  2:18  
So it's a well learned title. That sounds great. And so you started CAN or you know, it's a great acronym for a website, by the way, creating accessible neighborhoods. CAN, you started from your own experiences of ableism? Can you tell me, can you expand on that a little bit for us?

Heather McCain  2:36  
So I use the power wheelchair at the time, and I was trying to get about my community. But where I lived in Maple Ridge, the bus came once an hour. And at least half of the time, the bus drivers would lie and say that the ramp was not operating, because they just didn't want to bother with someone in a wheelchair. And obviously, that made it very difficult to get around the community and very hard to find any kind of day when the buses only came once an hour. And I wrote letter after letter to TransLink with no response. And then someone kind of jokingly suggested to me that I should just start my own organization. And after another letter came back with no response, I thought, okay, well, at least look into it and started, CAN, I wrote the exact same letter, but this time was executive director underneath my name and got a response a week later.

Evan Kelly  3:30  
Funny how that works sometimes, isn't it? 

Heather McCain  3:33  
Yeah, it's not how the system should work, or what you should be required to have before you're paid attention to. 

Evan Kelly  3:41  
Yeah, it's a bit of a sad reality in our society sometimes, isn't it? Now it seems, it seems that CAN is, you know, since 2005, has expanded a lot. I mean, you you've got lots of projects. So what are some of the current projects you're working on with CAN?

Heather McCain  3:56  
Yeah, so our current focus is on education. We have a series of workshops that we were doing, and they include breaking barriers, crip kindness, disability awareness, disability justice, gender and sexuality, impostor syndrome, and two queer and trans histories, one for BC and one for Canada. And we're also part of a variety of committees. For example, we're working with the Vancouver Writers Festival on increasing the accessibility of the festival. And we're working with the UBC on some focus groups on how to have lived experience more within the curriculum for medical students.

Evan Kelly  4:41  
Wow, it's a lot of, that's a lot of outreach. So you offer, obviously offer quite a variety of workshops. Are these open to anyone who wants to learn? Do you bring your own experts in a variety of fields?

Heather McCain  4:53  
So what we do is we have facilitators within our organization and we have both private and public. Currently we're doing private, because we're so booked. But we will be adding public in August. And we're looking forward to doing those and having it open to all sorts of people. Currently, we're working with organizations like Fortis BC and Bill Reid Art Gallery, and talking to these organizations to try to improve the equity and accessibility within their organizations.

Evan Kelly  5:27  
Now, do you, do you on some of these you bring into the office, you said you bring in some facilitators and some other experts. Do you bring your own expertise to these things? Do you spearhead some of these yourself?

Heather McCain  5:37  
Absolutely. So I'm facilitator for quite a few. And we have a co-facilitator, Harmony Bongat, who is a single mum, Filipino, disabled neurodivergent, has, you know, real experience in a lot of these intersectional issues that we need to discuss and say, co-facilitate gender and sexuality, the queer and trans history workshops, they actually created and research. And they're quite excited about those, those came about during the pandemic. And it's been great to be able to share our history more.

Evan Kelly  6:15  
Yeah, for sure. So when did you begin the chronically queer group meetings and what inspired you to do so?

Heather McCain  6:21  
So the chronically queer group meetings were actually originally through the organization Qmunity, and they were looking for a facilitator. And I started about three or four years ago. Unfortunately, we, I heard from a lot of people within that group, that there was a lot of ableism and inaccessibility within the organization. And so for a year, our group tried to work with the organization to improve accessibility. And unfortunately, that did not result in any changes. And the group voted to move away from that organization until a point at which they are going to center disabled people and accessibility. And so the group asked to come under the umbrella of my organization, creating accessible neighborhoods, and have been running that since. And it's a great group of people. It's wonderful to be in a room with other people who have shared experiences where you don't have to explain yourself, or you're not being told you're too sensitive, or you know, that you shouldn't take certain things a certain way. And you can talk to people about how hard it is to navigate the systems that are working against us.

Evan Kelly  7:36  
Yeah, that's definitely an ongoing dialogue. So in what ways right now from your point of view, is BC succeeding in supporting the disability community? And sort of what successes have you seen in recent years with your actions?

Heather McCain  7:51  
Yeah, so we have seen some changes through our advocacy to the Disability Program, the increase in what people are allowed to earn on disability, as well as things like crisis funding for someone if they have to move really quickly. There's been a lot of conversations about how to make the system work better, particularly the interactions between people on disability and the staff. And we have heard from members that there have been slight improvements, obviously not enough, and not where we would like it to be. But it's been nice to see some of the policies change. I think there's a lot more room for conversation with BC, we were part of the BC Disability Act consultations. And I think, you know, that's moving in the right direction. I think it didn't necessarily encompass everything that we had hoped for. But the fact that, you know, this is something that government is thinking about is excellent. And part of why we do this work.

Evan Kelly  9:00  
Now in a more of a sort of, dialed down sort of way as to how well is BC meeting the needs of the queer community? And when it comes to accessibility, where are we falling short?

Heather McCain  9:12  
Well, I think where we're falling short is often we're asking people to divide themselves. And so we have accessible spaces for disabled people, but we don't have accessible spaces for queer disabled people or black disabled people or incarcerated disabled people. And so we really need to look at having accessibility across the board. And I think BC relies a lot on the organizations for disabled people to provide accessibility and doesn't think about that broader community focus. So we definitely need to, you know, really incorporate that intersectional lens in whether it's for people who are queer and trans or whether it's for black indigenous people of color. You know, we really need to make sure that organizations and government understand people with disabilities are everywhere.

Evan Kelly  10:05  
Yeah, I read a really interesting sort of meme the other day, and someone had this idea that, you know, creating something that's accessible, doesn't sort of go far enough for humanity at large. It's more about looking at it a lens through a universality, rather than creating, like, oh, we've got accessible building codes. Well, okay, well, that's great. So we're, we're at that point, we're looking at maybe a couple of groups so that they have access to whatever we're building. But what about the idea of just universal lands? Looking at everybody, when we do anything?

Heather McCain  10:40  
Yeah, absolutely. And I think, you know, that's one of the things we talk about is that access is for everyone. And what improves life for one type of population improves life for others. So if you make condos and rentals accessible to people who have wheelchairs, you make it accessible to people who have strollers. And so it's really important that we look at this lens of, as you say, universality. And I think one of the most important things that is often missed in accessibility is options. You know, people want to make accessibility be one thing. But to people with disabilities, accessibility means different things. And we need to have options. Because you can have five people in a wheelchair and their abilities within that wheelchair are completely different, and what accessibility they need is different. And so yeah, I think we need to have more conversations about what everybody requires.

Evan Kelly  11:43  
Yes, absolutely. Now, you mentioned gatekeepers a lot on your website, can you explain what that is?

Heather McCain  11:49  
Yeah, absolutely. So gatekeepers, are people who whether intentionally or unknowingly create barriers to access. And so the organization was founded because of experience, my experiences with gatekeeping, which was a bus driver who drove an accessible bus that had an accessible ramp, who then said to me, that the ramp was not operating, therefore making the bus inaccessible. And so this is really frustrating because disabled people had to fight so much just to get the access on the bus. And then here is somebody who doesn't want to bother with someone who's in a wheelchair, and so he can cut off that access. Another example is that sometimes there are places with accessible washrooms, but you have to walk all the way back to the help desk to get a key. Now, first of all, this is difficult for a lot of people who have mobility issues, and that additional walking is difficult. There are people who don't have evident disabilities and have to talk the people at the help desk into letting them have the key to the washroom. Another example is, we spoke to a couple of universities that lock their elevators, and will only give the access key to certain people and some disabled students were unable to get that key because they didn't fit the image of what the university thought disabled people who need elevator access are. So those are all examples of where there is access, but then people are creating barriers to that access.

Evan Kelly  13:32  
Wow. So in 2022, here we are today in June 2022. Are there fewer gatekeepers these days, in your mind? Are we doing better at this?

Heather McCain  13:42  
I certainly think that there's more conversations about how people can be gatekeepers. And I also think that there are a lot more empowered disabled people who are willing to speak up when they see that gatekeeping which then allows the organizations and individuals to consider the gatekeeping and, and hopefully to move forward, unfortunately, some are told about the gatekeepers, and still don't do anything. But I think that's been a really great thing is I see so many more people advocating for themselves feeling comfortable to say, I am disabled, and I need this. And I think that really comes from the community support. However, as great as that is, I wish that disabled people didn't have to advocate for themselves so much, that the gatekeepers just didn't exist. And part of that is the organizations doing the work. And we do see a lot more organizations that are actually doing disability awareness workshop. We encourage organizations to have accessibility protocols. And this is something that helps everyone be on the same page, whether it's staff management clients, and that's something that has helped eliminate gatekeepers. Because I think to a large extent, it's just not understanding accessibility and how you're impacting another person's life.

Evan Kelly  15:06  
Very true. Now, but for me, I think it goes even a step further and probably for you, too. It's, you know, it's not just understanding, it's like, how do we get people to get past understanding and get towards empathy? That's the biggest one for me.

Heather McCain  15:24  
Yeah, I mean, I think one of the biggest barriers is that people are overwhelmed right now, you know, there's so much that's going on with the pandemic in the world. And within diversity, people often are overwhelmed with diversity, because, you know, what kind of diversity are we learning about, and then you look at the disability community, you know, if I focus on people with cognitive disabilities, what about people who are deaf or blind or, have mobility devices, and it can seem overwhelming. And so I think one of the things is, like, really breaking down this information to make it more accessible to people to make people realize the joy of learning, and this is something we really focus on a lot within our gender and sexuality workshop, is like, it's fascinating to hear people's stories. And so that's how we connect with people, is we use our members' stories, their lived experience. And we find that that connects to people better, because when they leave, they may not remember the details, but they do remember how they felt. And they do remember their reactions, and then that helps them to remember to actually make change the next time, because they have someone specific that they can kind of bring to mind, you had this experience. And it's really important for people to understand how their actions impact others.

Evan Kelly  16:57  
Yep, definitely. And it's, you know, it's, it's one of those things where, you know, I think that it starts at home, you know, it's, let's take these workshops, let's learn from those who are living these lives, let's empathize with them. But you know, let's be, let's start that at home with our kids and getting them to understand.

Heather McCain  17:17  
I think that's great, empathy, however, does have its limits. Because to an extent, empathy is trying to imagine being in someone else's shoes. And, you know, as a non disabled person, it is very hard to actually imagine being disabled. And so I think one of the key things is to listen to people of that identity, you know, people try to imagine what it's like to be disabled. And unfortunately, that's what government has done for so long. And then they make decisions and create policies that don't actually meet our needs. Because they're imagining a life in a different way than is actually the realistic experience. But absolutely, starting at home, make Google your friend, visit your library, you know, make sure that the shows that you're showing your children have different representations. SOGI, for example, has great book lists, and we actually created one on our Creating Accessible Neighborhoods website, that's for zero to six year olds have queer and trans books that are written by queer and trans authors. And we include some books that have disability in there as well. Because yeah, it's really important to move forward with the new generation. And it's been interesting. I am third parent to a child who's five and was in kindergarten this year. And you can see how societal pressures are already starting around language. And it's really important that this work is being done at home. And that, that kids are learning about it from a young age.

Evan Kelly  19:00  
Yeah, absolutely. I was super impressed with your website, you've received numerous awards for your work. You're even a torchbearer for the 2020 Paralympic Games. That must have been exciting. Can you tell me about that?

Heather McCain  19:12  
Yeah, that was awesome. So at the time, I was on the board for BC disability games, which I had been a competitor in in bocce, and they nominated me to be a torchbearer, which was awesome. And it was quite the experience. I learned that it's very hard to smile continuously as you hold the torch. But it was, it was great because actually what I enjoyed the most out of the experience was afterwards I was in my wheelchair with some friends going to a restaurant to eat after the, my section of it was done, and I had the torch with me and the amount of people who were so excited to see a Paralympic torch. Who knew what the Paralympics were who had attended the Paralympics. And I let anybody who wanted to hold it and take pictures with and it was just great to see so many people aware of adaptive sports and and see how interested they were and how excited they were about the Paralympics. So it was a really good experience.

Evan Kelly  20:19  
So I guess you're hoping for hoping we win the bid for 2030? 

Heather McCain  20:23  
I have complicated feelings about the Olympics and Paralympics because of knowing how much money it costs and where that money could be used. So I, I wouldn't say I'm a complete Yes in support of it. But I think with anything, if we do get it, you know, I know that it will be an excellent experience, and that it will help increase awareness about disability and adaptive sports.

Evan Kelly  20:51  
Yeah. And it's, you know, the Olympics that always is a bit of a double edged sword, isn't it? It's good for some things not so good for other things. So now here at DDA, we use a lot of adaptive tech to help our clients be engaged, help them to communicate, it helps them, let us know what their needs are, some of which we design or build ourselves. I noticed on your website, I thought this was really cool. You designed to double sling to alleviate pain on your back. Because I guess, because of the weight of your arms, that seems really, really cool. Now, are these things that you designed specifically just for yourself? Or do you market these things? Or what do you do with those kinds of ideas?

Heather McCain  21:29  
Yeah, so I have arthritis in my collarbones and can lose the use of my arms, if, like with repetitive motion, or if they're down too long. And so that double sling was created to help with that. And I actually did it through the Tetra Society of North America. And I know that they have a database of all the projects that they've done, and essentially, they're their projects, that if you can't find it, you know, in the in the current market, then they'll work with engineers and people to, to create it for you. So they made me a meditation bench that I could put on my wheelchair. They've made me trays for both my power chair and my manual chair, the manual chair had to be able to go in luggage for flights and the power chair had to be able to fold up and be okay with me kind of using my wheelchair as an ATV and being in really rough terrain. And they do these projects on a volunteer basis. And they just happen to have someone who knew how to sew. And so I was really excited. And I'm actually currently in the process of getting, I found some people who are disabled who know how to sew, and they're making me new versions to update it with some new ideas. So that's not something that our organization does, but we very much support the Tetra Society and the work that they're doing and point people to their websites, which have amazing projects listed on it.

Evan Kelly  23:03  
That's really great. Now, when you when you look at sort of your life and what your own needs are, even just from your own point of view, do you find like, when you find that you need something, it's relatively easy to find it? Or have it made? Or is this Is that something that you know, becomes another obstacle you have to get over?

Heather McCain  23:23  
It's definitely been an obstacle, I've had to be very creative, as I think a lot of disabled people have to be, we're very adaptive. And while we might find something that can be bought, it still needs to be personalized. You know, one of the downsides of having a disability is the fact that things that are available on market are usually so expensive. And so often we don't have the funding for that and have to create a cheaper version on our own. And so there's been a lot over the years that I've had to adapt whether I get the ideas from things that already exist or try to create them myself. But yeah, I'd say it's, it's not always that easy to get exactly what we need.

Evan Kelly  24:07  
Now, do you think you know, you mentioned money there. Do you think that the government is not doing enough to provide those kinds of funds?

Heather McCain  24:16  
Yeah, absolutely. And I think they're... kind of the narrow criteria of who is allowed to get mobility devices is problematic. For example, I currently am using a walker because it's during the pandemic and I don't have to go very far. But I have a power chair that's now 15 years old and will need to be replaced but because I am walking outside of my home for short periods with a walker, I no longer qualify to get the power wheelchair. And so I think the government is missing a lot of people who need mobility devices with their narrow criteria. I also think that they need more money to make the process faster. We've heard from quite a few people who, you know, it takes nine months to a year to get their mobilities device. And in the meantime, they're sitting at home and unable to go out. So I definitely think that the government could be putting more money into assistive devices, and particularly custom assistive understanding, that is not a one size fits all kind of solution.

Evan Kelly  25:28  
Yeah, of course. Now, is that the kind of lobbying you are doing these days with CAN?

Heather McCain  25:34  
That definitely is some of the projects that we do. And we look for kind of what comes to us. And currently, our focus right now has been on looking at the, the medical system and trying to get lived expertise from disabled people within the medical curriculum. So that we have advocates who are working on our side within the medical field as well. We hear from a lot of our members who have to fight and fight and fight in order to get their doctor to fill out whether it's, you know, disability benefits, or adaptive equipment, the paperwork that the government requires, and some of our members, their doctors just won't do it. And so we feel it's really important that those medical students learn it from a early stage, so that by the time they are doctors, they can be active and effective advocates for their patients.

Evan Kelly  26:32  
So just one last question for you here, Heather. What are your future plans for Creating Accessible Neighbourhoods?

Heather McCain  26:38  
Ooh, that's a good one, we have so many plans. One of the main things that we're looking at right now is trying to get our workshops online so that they're available for people who aren't able to make it at specific times. Or we have some people who need more time to process. So if it's a two hour workshop, they need to take it in chunks, or they want to watch it multiple times. So we want to make it as accessible as possible. So that's something that we're currently looking at. We're also looking at partnering with more organizations to move the conversation forward on creating more accessible pride events. And understanding that it's really important that we don't just think about people with disabilities, as spectators, but as active participants, because often, organizations, for example, an art gallery will think of the people who come to view the art, who have disabilities, but not the artists who have disabilities, private organizations will think of spectators, but not people in the actual parade who have disabilities. And so we really want to have more organizations understand that 360 degree view and continue to work with these organizations on educating them and helping them create accessibility protocols. And moving these conversations forward so that future generations don't have to do this work.

Evan Kelly  28:10  
Well said. Well, thank you very much for joining us today. You have been listening to DDA's Encouraging Abilities podcast Our guest today is Heather McCain a powerhouse in creating awareness and accessibility. Yes, a powerhouse and support for the disability and queer community here in BC. If you'd like to find out more about them and what they do, you can go to www.canbc.org. Heather, thank you so much for joining us today.

Heather McCain  28:36  
Thank you for having me. I appreciate it.