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hay Erlich is a hard of hearing, multiply disabled, and genderqueer child and youth care practitioner, accessibility consultant and artist. They’re one half of the duo that started the Cyborg Circus Project, which brought together disabled youth in the Greater Toronto Area and offered them performance and social support until it disbanded this year.

Now Shay works as an accessibility consultant where they coach companies and organizations working towards making their workplaces a more equitable environment for all.

In this interview, Shay spoke to The Hoser about the impossible hoops disabled Torontonians must jump through to access the proper care and funding they need to live an equitable life, disability doulas, the importance of disabled people in leading roles in their communities, and medical assistance in dying and the effect new federal legislation may have on disabled youth.

Photo description: Shay, a white trans-masc non-binary human in their mid 30’s sits in their wheelchair. They are positioned on a wooden boardwalk extending over Lake Ontario, and there are many boats and masts in the background. Photo by Taj Grewal

The Hoser: Why did you found Cyborg Circus Project and what work are you doing now?

Shay Erlich: They're really intertwined because nothing has changed in the systems as they existed three to four years ago. My story of how I became involved in all this activism is that I grew up as a teenager in the early 2000s in Toronto, which was the heyday of youth-led activism. There was a lot of money for it, people were really invested in it. And so I grew up going to organizations like the Toronto youth cabinet, working with EYY, which was a peer support helpline, helping with the management side of that, where they had a youth board that kind of ran it.

And so that was work that I was deeply involved in. And then as my body became more and more disabled—I mean, I've been disabled my whole life. But my disabilities progressed in my late teenage years, and early 20s, as is a really common story for a lot of disabilities like autoimmune conditions, and other, sort of, lifelong disabilities are really commonly diagnosed between the ages of 16 and 35. And so, like many folks in this world, with my body getting more and more disabled, there was less and less that I could do. And all of the support systems that I knew how to advocate for really well, and like work within, all of that stopped working.

As I became disabled, there was nowhere that felt safe to be and no matter what I tried to do, I always felt like I was leaving a part of myself at the door. There was always an expectation either that I’d be must disabled or less queer or less complex-ly disabled. You know, it wasn't ever a problem finding an accessible room close to a transit line. But ‘oh, you need sign language interpreters? We don't know how we're going to pay that.’ And then when I would go into disability spaces, I would have my accommodation needs met. But these spaces really didn't align with my politics. For the most part, there wasn't a lot of radical disability community at the time.

I think Toronto was really unique in that there was a racial rupture in the queer community that really impacted me as a disabled person. The really interesting things that were happening in the disability community in Toronto in the early 2010s were mostly being run by the BIPOC community who have like, very legitimately been like, ‘white people get your shit together, and we don't want to interact with you until you do.’ And so as a white, multiply disabled person with these politics, there was just nowhere to be for me that felt okay. And the mainstream support services had no idea of the realities that we were facing or the barriers that young people with disabilities faced, constantly running into major issues of discrimination at school that nobody could support me with. There's so many complexities around being in school and being on ODSP that nobody was prepared to navigate.

I remember I was in grad school and getting homemaking services from the City of Toronto. And the city of Toronto was like, ‘well, what's a day that you're consistently available every two weeks between the hours of 9 am and 5 pm.’ And I'm like, ‘I'm disabled and require support with maintaining my apartment, but I'm also a grad student, I can't. I'm sorry that my life isn't as consistent as you expect disabled people's lives to be but I'm not home to supervise somebody doing this work.’

And also, when you move into the full system of direct funding, it's really challenging for disabled people to navigate and understand because the program is desperately in need of an update. There have never been good support services that can handle the complexity of multiply marginalized disabled young people, particularly those who are in a very common sort of crisis state around when you first get your diagnosis.

And so many of the supports and services are set up in ways that on the surface they make sense as to why someone would set up these particular policies. But those policies almost always assume a perfect system. So for example, to get accessible housing, the policy is that you need to be using a mobility device before you switch over to a request for affordable accessible housing. You cannot get funding for a mobility device through the assistive devices program unless you are going to use your mobility device both inside and out of your house. Which means that automatically if you're looking at mobility devices, like a wheelchair or a scooter, and oftentimes even a walker, if you don't live somewhere that is already accessible, you can't get funding for those devices. So you can't get the apartment to get the device until you have the device, and you can't get the device to get the apartment until you have the apartment.

And nobody is tracking these systems and the ways that they impact young disabled people's lives. Nobody's doing anything about them, we have a data problem because we're not thinking about them and so we don't realize that there is a problem to be solved.

And there's a concept in disability justice communities, this concept of a disability doula. And the idea is that there is a disabled person who has gone through all of these systems, who now teaches the people coming up behind them how to navigate all of this us in but there is a wealth of knowledge within the disability community, that often people lack the entry points into finding. How do I find the person who knows something about the situation that I'm in?

And so we decided to create an organization that could be a place where disabled folks could come together who were all in this similar life stage of emergent adulthood who are all navigating potentially new diagnoses, diagnoses that would become more complicated as folks age for the first time. So you might have found out that you've had a learning disability when you were in school, get to university, and then your body starts crapping out and realize, oh, not only was it a learning disability, there was also an autoimmune or a collagen disorder or something like that, that the symptoms in childhood were more easily rendered invisible. And now that you're an adult, things are really different. And so we wanted to see what would happen if we put folks together in a room in a space and gave them a chance to share the knowledge and the pieces and bits of the system, but they had learned from each other.

Photo Description: A number of disabled young people dressed in all black perform under stage lighting. There are a variety of mobility devices including crutches and wheelchairs in the group. Each person has their left arm raised in front of their face. Photo by Stévia Arthur

TH: And so how did the Cyborg Circus Project start?

SE: So the Cyborg Circus Project started with myself and Jen Roy, and we ran our first program in 2018. It was a dance program for disabled non-dancers with a performance at the end. And in 12 weeks together we put together a showcase, I think we had about six performances from disabled young people between the ages of 16 and 35. And because we put out there that we were queer and non-binary we got mostly queer, disabled, young people in one form or another. It was an intentionally very diverse group, we made sure that we brought in facilitators who were not white, and access providers who were not white to make sure that everybody could feel seen and represented in the work that we did. Because again, the entire point of cultivating this space was it was meant to be a space where nobody had to leave a part of themselves behind.

And so it was amazing. It was magical. It was one of the coolest things I have ever seen come together in a disability arts, community arts kind of space. We created a show that had radical access, even though it wasn't fully accessible to everyone, we worked with young people to start thinking about how image descriptions can be used in their work in describing their dance work. We had one of our young people who went through and actually wrote out a whole description of their performance. And so they had multiple pages that could be read through a text reader, or screen reader, for folks that weren't able to access it. We had a wonderful Q&A by one of our young people who was getting into dramaturgy and was asking really fantastic questions at the end for the folks who participated. And we really had [a range of experience] from folks where these were some of their first performances, to folks who had been on and off stages for most of their lives. And I was just shocked, not shocked because it was the intention, but I was really excited by the ways that everyone found their role in the final performance.

It was big, it was ambitious, it was underfunded, and came together in way less time than it needed. And I would never run the same program the same way today. But it was this beautiful, like, magic and something that I had never seen before. I had never seen a program created before that really put the needs and the experiences of disabled people first, because we really made an effort to think about considering the whole experience from the moment that a participant left their house to the moment the participant came back to their house, as things that we had to think about and be mindful of how we're offering programming.

And so we cooked food every week for 20 folks and brought in vegan, gluten-free food, knowing that for some of our young people, it was the only meal that they were getting that day. Just knowing how much of an act of caregiving people food is that is safe for them in the disability community. Because so much of the time we show up to something in the community and you're like, ‘ah, can I eat this? Is it going to make me sick? Is it going to be cross-contaminated?’ And so being able to be really clear about to what extent we could guarantee that people's food was safe, and making the best effort that we could with the resources that we had was a huge thing.

We pushed funders to cover a significant amount of transportation, which is different from how most community programs do it, [where they say]  ‘here are two tokens and we'll cover your TTC fare.’ We actually got funding to be able to send people in door-to-door transit, recognizing that not everyone felt safe to take Wheel trans and that it's not always the best option for everyone. And so we were able to do things like call Ubers for folks, if necessary, or put someone in the cab if we needed to, to get them back home safely. And we were able to do that for both participants and staff because we hired disabled people first. And so sometimes that meant that our staff people overshot their energy levels and needed a ride home because they couldn't do it on TTC.

We also intentionally left the first hour of the programming open for people to talk to each other recognizing that sometimes just getting on transit can be a traumatic thing. If you've got a really terrible Wheel Trans driver, a really terrible taxi driver, you're not going to be able to come into a space and shake that off in five minutes. And so number one, you know, we aimed to have the dancing take up about 90 minutes of a three-hour program. Because we knew that we needed to give people time to just be able to settle into the space and to be able to be who they were.

TH: Can you tell us a bit about what you're up to now?

SE: A lot of the work that I'm doing right now is with organizations that are interested in learning how to align their practices more closely with disability justice practices, and really being able to expand the work that got started in a community arts program across the arts and social service ecosystem, both in Toronto and also, a lot of my work has been on a more national scope as well.

I'm working with a number of organizations that are interested in making their work more accessible but also starting to work with organizations that are really interested in laying the groundwork for how the disability community can continue to make space for emerging leaders and support their work. There are a lot of things going on in the disability community where disabled people will often start really successful programs the same way that we did. And then bigger organizations who have funding to see them continue will take them over. But in that process, they will lose the intentionality that the disabled folks who founded them have brought.

So one of the next big steps is getting support across both the city as well as the country, ultimately to provide more pathways to keep disabled people in power of their projects and to funnel resources and support to them, particularly for folks whose disabilities have pushed them out of higher education; really, these days higher education is seen as the pathway or the funnel towards leadership in our society. And so moving back to some of those models that were really successful in the early 2000s, of bringing a bunch of us into leadership positions, who wouldn't otherwise be there, seeing how we can take the principles from that push in that movement, and bring them to a community that has never had access to them so that the community can be better positioned to advocate for its own needs.

To this day, so much of the conversation around disability is centred around disability-adjacent people. You would see a lot of parents of disabled children who don't have disabilities of their own take up a lot of space. You see a lot of space given to medical and paramedical practitioners as well, who really just don't speak to what the lived experience of it is. They can speak to certain pieces of it with expertise, but those voices shouldn't be valued over the disabled voices that are speaking about what they experience.

And so a lot of the time it was the same thing with youth-led work, that push and pull, ‘we want a young person to show that we can do it, but they need to be a palatable young person who also is composed and knows how to talk to adults’ and gets put in that position of if they mess up, it undermines the validity of anything that they can say. That's not what youth-led organizing is. And it’s not fair to say that nobody is pushing for it. It is fair to say that nobody is listening to the push or that the call is rarely heard in the way that it's articulated. There's still that push for sure to include disabled voices, but they're going to be the palatable voices. They're going to be the white, educated, straight, not particularly complex-ly disabled voices.

TH: What specific projects are you working on now?

SE: I'm working with Decoy Projects who are based out in BC, they've got an upcoming digital sound installation called Chaotic Rhythms. I'm going to be doing some art interpretation and art and accessibility work with them. So they've commissioned five sound artists to create these digital sound installations. And they've come up with a concept of what the website is going to look like and how the sound is going to be interactive. And so now we're talking about how to make that experience accessible and equivalent to folks who might not be able to see and interact with the website, or who might not be able to hear the sound. And so it's going to be really fun, not like traditional video kind of work.

TH: Why should people work with consultants and why it's important?

SE: Because it's okay not to know. I think the first thing that I would always say is that like, in my consulting work, I really love working with organizations at any stage of the game. I love working with organizations that are like, ‘we've never thought about this before.’

There are organizations that deeply want to invest in restructuring their entire organization to work from a disability justice model. And what I love about this work is that there is no right or wrong answer. And in choosing to do nothing, we're already making decisions about what kind of access we're providing. And so what I like about this work is that it really gives us the chance to really look at how an organization or program or an event is going to function.

And really match and see if the values that we want it to have are reflected in the ways that we're going about it. And so very often, you'll see that people are like, ‘oh, yeah, we've already decided on this and this, listen to this,’ and I'll be like, ‘Okay, so you've picked the venue? Did you check-in and see if it was near an accessible subway station? Did you check and see what the bathroom situation was like? Did you check in to see what the front door was like?’ And suddenly, you can realize that, oh, just that one small decision of picking where we were going to hold an event already has five or six layers of implications as to what that means about who you're expecting to show up for the event and the kinds of experience that they're going to have of your event.

And I think that that work is so critical because we rarely get the chance to really sit with and interrogate if what we're trying to do is actually going to accomplish the thing that we're saying we're trying to do. And I think that that's one of the most critical parts for any organization, or for anyone who's planning anything, is to really check and be like, we want disabled people to come. Great, disabled people want to be there.

20 to 25% of Canada's population is disabled. And we know that that statistic is an under-representation of our community, because of the stigma associated with identifying as disabled. Even when Stats Canada asks that question, so many people still go, ‘oh yeah, I don't think that my thing is severe enough to count.’ So we know that if you've got a group of more than three or four people, there are already disabled people present. But we don't talk about it ever. And so I think that this work is really important to bring the conversation in because it reminds us that we are always having the conversation and that in not having it explicitly, we are still sending messages about what we think of disability.

And so if we're going to be sending messages about disability, no matter what we do, doesn't it make sense to actually talk about it, instead of just letting that conversation go unnoticed and unremarked? So a lot of the work that I do is just having conversations with people, asking them provoking questions and waiting to see what it makes them think about, and kind of sitting back and smiling as they work through it in their head and work through it as a team.

TH: What are your thoughts on the broader national conversation about medical assistance in dying?

So medical assistance in dying is an ongoing conversation here in Canada.

And it's unfortunately the natural conclusion to a society that invested heavily in the disability rights movement in the 1980s and hasn't done a lot since then. And in a neoliberal society supports and services for disabled people are one of the first things that get cut. For example, in Ontario, the Ontario Disability Support Program pays worse now than it did during the Mike Harris years, which was the late 1990s in Ontario.

And so disabled people are often being asked to survive off of less than $1100 a month. And that $1,100 is the sum total of support that you get for everything. And we know that you can't even find a room in Toronto for less than about $1,000 these days. And the support services that are there don't have any shortcuts for disabled people, it's not like you can be like, ‘Oh, I suddenly got disabled, I need to be at the top of the waiting list.’ They're going to be like, ‘cool, we still haven't housed the people who suddenly got disabled 10 years ago, we'll add you to the bottom of the list and keep going.’

And disabled people just run out of options.

Like really, and truly, there are no supports and services available to them, you end up stuck in your house or in a bed, unable to go anywhere because you can't get the mobility devices that you need. You can't get to and from your doctor's appointments. So if you wake up one day, and your body is like, ‘Hey, I can't do this,’ and if your doctor can't figure out why right away, you don't get any support until you have that diagnosis or unless your doctor can understand how to work the system to make nonspecific diagnoses to get you access to services.

But even then, it's not like qualifying for services because you have a diagnosis that makes them move any faster. The waiting lists for any kind of substantive support in Ontario are years long.

Direct Funding, which is a program that allows disabled people to hire and direct their own personal support care worker, personal care, and home support means, has a waiting list for two years in Toronto. And then that's a waiting list for the interview. And then there is an interview to get accepted onto the program, which is essentially competency screening to see if you are competent to direct and manage your own care. And then there's like a further series of hoops to jump through in terms of getting it set up, including the most archaic bookkeeping system and fund management system that I have ever seen.

As someone who has regularly signed contracts with arm's length governmental entities handing out taxpayer dollars in the forms of grants and stuff, I have never seen a contract as ridiculous as the direct funding contract. And so people just run out of options.

And so, unfortunately, when the medical assistance in dying case went through in Quebec, people really didn't understand a lot about the social context that disabled people were living in. And narratives about ableism and disability meant that disability was not seen as something that people could find love for themselves in, something that people could find joy in or something that people could find pride in. It was not even presented as an option.

So the Justice who ruled on the case heard that the lives of these two disabled folks that were seeking medical assistance in dying were in misery—and I don't want to undermine the suffering that they experienced in any way, because it is truly horrific—but the cause of the suffering was not their disability, the cause of their suffering was the ways in which the systems were not set up to allow them to preserve any agency, as significantly disabled adults in society.

And we're seeing that play out over and over and over again, where the state would rather make it easier for disabled people to die than it does to create conditions where disabled people can thrive, where disabled people can love themselves, where disabled people can be happy, competent members of their community and contributing members their communities. So much of the disability rhetoric at the federal level is about the employability of disabled people as opposed to disabled people's quality of life.

The problems with focusing on disabled people's employability is really a much broader national conversation about the role that capitalism plays in all of our lives. And it's very limited in terms of its capacity to actually generate productive conversation. And so [with medically assisted dying] what I'm really hoping for is that we have to realize that we're talking about disabled people who are my age or younger, who are often within the first five to ten years of being disabled when everything is still an emergency, and you haven't found the supports that you need yet. And why should disabled people spend the first five to ten years of their diagnosis bumbling around in circles, trying to get their basic needs met?

It gets exhausting trying to explain to all of these people again and again and again, why the support systems that are supposed to work don't. And why you don't have the resources that you need. And everybody just wants to send you to the same solutions that don't work.

And at what point do you just give up? Like, how much fight are you supposed to have? In a system that doesn't work and sends you around in circles? How patient are you supposed to be with that before you just internalize the message that: Well clearly if nobody ever thought about my situation, and provided support and services for it, then I'm just not meant to be here?

It's a very easy thought leap and the young people that we worked with were devastated when bill C7 passed. And again now this year they’re having continued sittings on extending it further to folks with mental health diagnoses with no other conditions, to advanced directives, to significant consideration of mature minors. In some cases, they're saying that kids as young as 14 might be able to make that decision.

I remember what it was like getting a diagnosis of a chronic illness when I was 12. And I was, you know, competent at 12. But the idea that there was something that was bigger than me and that was going to be a part of me for the rest of my life that I could never change about my body was something far bigger than any 12-year-old could grapple with. And I had a parent with the same condition. It just sent me into a really terrible place mental health-wise for years.

And I can see different versions in my reality where if that had been an option that was available to me, it might have been one that I explored. And I feel very grateful that it was not an option or something that I have ever felt, like, pressured into.

But knowing what it's like to live through all of that time, people not hearing you and people not caring, and there being no solutions. I absolutely have nothing but empathy for the folks who have hit that point, because it is a brutal place to try and survive. And it's an impossible place to try and imagine anything different from like, I can't even get the support to get out of bed. How am I supposed to imagine, you know, being able to one day work? And the reason why I can't answer the question about what is a typical day as a consultant is because the freedom that being a consultant gives me lets me take each day as my body and brain are ready to take and gives me the freedom to plan my week. So that, you know, if I know that I only have a certain number of hours per day that my body is capable of working, I get to choose how many of those hours I want to spend outside walking with my dog or talking to my neighbours or being with my community.

And I get to actually have a full life in a way that a lot of disabled people are not privileged to, because we spend so much of our time and our energy coordinating our care, trying to find somewhere to live trying to chase down diagnoses, trying to make sure the doctors refill our prescriptions on time and get to the specialist appointments.

…Yeah. And so I don't know how we get to a place where we find each other in the middle more unless we talk about it. And unless we make it more of a national conversation. Because there's so much of the experience that gets so overlooked and so lost when we rely on people who aren't disabled people themselves to develop and administer programs and criteria.

TH: When you look to the future of accessibility in Toronto, and maybe Canada as a whole, what are your hopes?

SE: I see hope all over the place.

I see a lot of opportunity given that we are emerging from a pandemic, which is one of the biggest, most disabling events of many of our lifetimes. We can have a conversation about disability and inclusion and accessibility in a way that we haven't been able to have as a nation before. I see so much hope in the clients that I'm working with that are coming with a genuine desire to do something differently than it has been done before. Not just because they think that it makes good economic sense, but because they're personally impacted by it, and they've seen those goosebump-inducing moments and those magical moments of what our world can look like when we really do include everyone and create spaces for them to be all of themselves.

And what I really hope to see is a changing of the guard. Like, in many industries, in many professions, we've got some folks who are [retiring]. Generationally, we are seeing boomers leaving the workforce, and we are seeing new folks and new perspectives come in, particularly coupled with an increased focus on equity to make spaces for leaders to come up from positions and communities where they haven't been able to see that before.

And so I really want to see more non-white disability leaders, I want to see more queer and trans disability leaders, trans especially because there’s so much brilliance in the trans disability community, and so much brilliance in the BIPOC disabled community, and particularly BIPOC queer and trans disabled folks who have just absolutely magical things to say.

And we need to see better pipelines to make sure that when folks go looking to replace the voices that they might be used to calling on that we have adjusted our criteria of what it means to be an expert on disability, such that those VOICES can find a real platform.

So ultimately, I just want to see more disabled people getting in there and shaking things up and doing things differently and dream in their wildest dreams of what a disability justice informed future can be like.

And we're seeing those dialogues start to emerge. The disability filibuster, that Gabrielle Peters and Catherine Frazee are organizing is a really good example of homegrown disability justice activism. The Disability Justice Network of Ontario continues to do some phenomenal work both inside and outside of the system. And I want it to be less niche and less tiny and for people to really invest wholeheartedly. This work is going to be good not only for disabled people, but it's going to change non-disabled people's worlds in ways for the better, the way that every time we've listened to disabled people and what they need, it's changed non-disabled people's lives for the better. We owe so much of what we take for granted these days, like curb cuts to disabled people. And let's go out there and let's find some of the next curb cuts to move forward into 2022 and beyond.

TH: What's your favourite spot in Toronto?

SE: Honestly, I really love the waterfront down by Amos Waites Park. Okay, it's just beautiful. I go down there as often as I can get there. I live in Weston and I've pushed my chair there, which is like 11 kilometres, with like half of it uphill. And so that's when you know you're committed when you get there under your own steam.

There's like a gazebo by a yacht club and there's this really cool boardwalk along the water that's got these bumps on them that are really fun to play with as a wheelchair user, and there's a pirate ship-themed waterpark. It's very cool. Definitely check it out.

Posted 
May 20, 2022
 in 
Culture
 category

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