Photo Courtesy of Kelsey Savage & John Woods, Real Talk

On paper, Alison Klein is a serious academic with a master’s in interdisciplinary studies focused on adult education and disability. Meet her at one of the Real Talk’s free public events (affectionately known as “pizza parties”), and she’ll be the first to greet you as a peer facilitator and make a joke—sometimes with anatomically correct models at the ready.

“I go, ‘Look, a present’, and then just walk away,” says Klein with a smile. “I have kind of a funny side.”

Founded and managed by sexual health educator John Woods, Real Talk is an initiative based in Metro Vancouver that supports people with intellectual and developmental disabilities (IDD). Woods has worked in community living spaces, schools, and sexual health organizations since the early ’90s, both in Canada and in London, UK. He saw the urgent need for sex education tailored to the IDD community, and a slew of intersectional barriers rooted in eugenics. Now, in between pizza parties and Q&As, Real Talk works with the community living sector to support providers and those with cognitive disabilities.

“Step five is getting the public to acknowledge and affirm that folks with intellectual disabilities could be LGBTQ,” explains Kelsey Savage, Real Talk’s project developer. “Step zero is the general population believing that folks with intellectual disabilities have a sexuality at all.”

Since its founding in 2017, Real Talk has grown to include both certified sexual health educators and peer facilitators with lived experience, ensuring its initiatives are driven by community needs. While the disability rights rallying cry “nothing about us without us” has existed for decades, Real Talk remains one of the few accessible sex-positive resources that centre self-advocacy. It provides an extensive library of YouTube videos addressing common questions around sexuality and disability. Savage also oversees Connecting Queer Communities (CQC), a social group for 2SLGBTQIA+ folks with cognitive disabilities to connect across the Lower Mainland both in person and online. People often attend both Real Talk and CQC events, and several have joined Klein as peer facilitators themselves. As facilitators, honouring education and community could mean helping someone explain orgasms to their partner one day, and being with someone’s deepest traumas the next.

“It’s happened a number of times at our events, where people have discovered they’ve been taking birth control and it’s been called a vitamin, or they’ve had an IUD and they didn’t consent to it,” says Savage. “There’s already a lot in the room before you step into it.”

As Real Talk works across communities to expand its outreach, what’s needed to ensure the future of good sexual health education is clear: government-sponsored education and publicly funded accommodations and support so people with cognitive disabilities have an equitable pathway to become sexual health educators. “I want to ideally work myself out of a job,” teases Savage.

“Earlier, I was mostly around staff and disconnected from my community,” Klein says. “I hope Real Talk is a starting point, and that sex education can be taught in schools to kids from all different backgrounds, so they all have a frame of reference [for] each other.”

I was walking home from the grocery store when a well-dressed man politely stopped me to ask for directions. “Could you tell me which way to Bloor and…” He struggled to get the next word out, a pained expression on his face, but I knew better than to try to finish his sentence for him. “… Bathurst?” he finally said after several seconds of straining.

When I tried to answer, he quickly interrupted to tell me that he didn’t actually need to know. He was practicing stuttering openly, he explained, hoping to become more confident doing so around strangers. I lit up with excitement. “Are you doing that because it’s National Stuttering Awareness Day?” I asked, always eager to connect with other people who stutter. The man looked surprised and asked why I knew that, so I explained that I grew up with a stutter. He nodded, looking a bit wistful: “And I suppose your stutter has magically disappeared since then?”

His question gave me pause. I understood why he assumed this—when compared to his stutter, which was fairly severe, I sounded fluent, stutter-free. But was I? Even in the brief time I’d spoken to him, my stutter had influenced my speech: for example, I’d chosen to misname International Stuttering Awareness Day as National Stuttering Awareness Day, to avoid the tricky front vowel sound at the beginning of the word—a sound I continue to struggle with, likely because it’s at the beginning of my name. And while it’s true that my stutter was more noticeable when I was a child, this was partially because I’d since found reliable workarounds for difficult words and sounds, helping me hide the worst of it.

To answer his question, I opted for the simplest explanation: that I used to stutter but had grown out of it. But was this true? Had I really outgrown my stutter?

*

According to the Canadian Stuttering Association, four percent of Canadian children stutter, with three-quarters of them eventually ceasing to do so, leaving only one percent who stutter into adulthood. But what about the other three percent, the supposed ex-stutterers—can we assume they grow up to be completely free of their past disfluencies? Or on some level, do their stutters continue to influence their decisions and affect their lives?

Most people who meet me don’t notice my stutter, or they chalk it up to shyness or insecurity. But while most of the time, I don’t stutter overtly—thanks in large part to my learned knack for word substitution and assortment of ready-made circumlocutions—many of my choices are still guided by a deep fear of the disfluency that resides, dormant but waiting, on the tip of my tongue. Stutterers like me, those who can reasonably pass as fluent, are called “covert” stutterers, meaning that the most prominent features of our stutters aren’t the overt ones—the syllable repetition, prolonged sounds, and vocal blocks usually associated with stuttering—but the things we do to hide them.

Tiffani Kittilstved, a speech language therapist and lifelong covert stutterer, started stuttering as a child, though no one ever named or diagnosed her condition. Her stutter provoked negative reactions from authority figures, so Kittilstved quickly learned to hide it using a combination of whispering, changing the pitch or tone of her voice, and putting on strange accents. “I’d gotten to the point where if someone talked to me, I would cry and just not respond,” she says. When people meet Kittilstved, they might not even notice her stutter—and yet it has affected her life tremendously.

As any stutterer can tell you, vocal disfluency can deeply impact a person’s decisions. For example, most stutterers have difficulty saying their names. I struggle to introduce myself without backpacking on other words, and always respond with a rushed “My name is Isabel,” rather than just “Isabel” when asked my name, a trick that usually works, even if it often sounds clunky and awkward. My worst nightmare is a circle of strangers saying their names one at a time, and despite being a social person, I generally avoid situations where I have to meet many new people at once.

This is a common experience for stutterers, and one that can complicate our social and professional lives. “I can only imagine how many people think I’m an aloof bitch based on how rarely I ever introduce myself to someone new,” says Sophia Stewart, a journalist who has written much about her covert stutter. “Mostly I just don’t introduce myself unless it is absolutely imperative. I try not to think about how many missed opportunities, missed connections, and bad first impressions this has resulted in.”

All this to say, many people who supposedly outgrew their childhood stutters are still guided by their effects, both vestigial and lived. So while I may have grown out of my stutter in the sense that its severity has decreased with age, I’ve also grown out of it in the sense that it has shaped my identity, informing the way that I speak, interact with others, and move around in the world.

*

Between 2018 and 2021, the British Stammering Association (STAMMA) implemented a cross- sectional survey of U.K. adults and found that between two and four percent of respondents self-identified as stutterers—significantly more than the previously accepted figure of one percent. Unlike its predecessors, this study relied on self-reporting, which means that while there are far more stutterers than previously thought, many of us are hiding it—at least, those of us who can.

Being a covert stutterer is a liminal position, teetering between ability and disability. Which begs the question:is a stutter defined by one’s experience of speaking, or by the perception of the listener? If others don’t notice your stutter, can you really call yourself a stutterer at all? And if covert stutterers don’t identify with their disability, how might this affect the way they see themselves—as well as whether or not they ever come to accept it?

The social model of disability, which has been accepted and celebrated by disabled communities worldwide, defines disability by the limitations imposed upon an individual by society, rather than any supposed limitations of the individual. Stuttering, however, has been notably absent from disability discourse. As Stewart wrote in an article for The Baffler, there has been “a glaring omission of speech and vocal impairments from disability scholarship as a whole.” Most research done on stuttering is clinical, with a focus on the reduction of overt stuttering, rather than accommodation and acceptance.

But this is beginning to change. Some researchers argue that treatment shouldn’t be centered around eliminating a person’s stutter, but rather on reducing harmful thoughts and behaviours surrounding it. In a 2022 paper published in Topics in Language Disorders, researchers Tichenor, Herring, and Yaruss proposed a new framework for understanding stuttering that prioritizes the speaker’s experience over the listener’s, making room for the ways in which covert stutterers’ lives are affected by their ways of speaking. This includes their personal reactions to their stutter, including their affective reactions, such as shame, fear, or anxiety; behavioural reactions, such as avoiding certain sounds or not making eye contact when speaking; and cognitive reactions, such as ruminating about future events when they expect to stutter. In short, having a stutter is about more than just the sound of one’s speech—there are a whole host of psychological and behavioural factors at play, too.

Nevertheless, from what I’ve seen, many covert stutterers have imposter syndrome about their stutters, meaning they likely wouldn’t seek out this kind of treatment. I never asked for accommodations in school because I was convinced my stutter wasn’t “bad enough” to count, and didn’t want to have to justify my covert stutter to skeptical teachers. Of course, I regretted this decision every time I had to present a paper aloud, forced to cut out entire sections on the fly because getting the words out was taking twice as long as I’d anticipated. I wish I’d asked for alternate ways of presenting my work: a peer could have read my paper for me, for example, or I could have pre-recorded my presentation.

For some covert stutterers, this imposter syndrome is reinforced by others’ reactions. Stewart recalls being shut down when asking for an accommodation from a high school teacher who randomly called on students to answer questions. “I went to her early in the semester and told her that I didn’t feel comfortable or able to participate this way,” Stewart says, adding that she offered to work with the teacher to figure out another, more accessible way to show her engagement. “She was incredibly dismissive and basically said no. Every day I sat in her classroom in sweaty, heart-pounding terror that I’d be called on.”

In university, Stewart was granted the accommodations she requested: she was excused from “compulsory oral participation,” meaning her final grade wasn’t affected if she didn’t verbally participate in class, and she was given alternatives to oral presentations. However, this came with another set of problems. “There were some who made assumptions off of my disability requests—who quite clearly assumed I was slow or shy,” she says. The way they spoke to her was patronizing, which was frustrating for Stewart. Indeed, studies have shown that stutterers are perceived as less intelligent, articulate, and competent than non-stutterers. This is due to “disability drift,” a phenomenon Jay Timothy Dolmage explores in his 2014 work Disability Rhetoric whereby people assume that someone with one disability is also impacted by other, unrelated disabilities.

Ultimately, whether or not a covert stutterer identifies as disabled is deeply personal. “I consider disability as more of a public identity than a private one,” Stewart says. “Like, if someone asked me to describe myself, I don’t think I would list ‘disabled’ as one of my intrinsic attributes.” The label has proven useful for her, however, both because it has helped her access accommodations and because it offers others an easy foothold for conceptualizing her experience. “Disfluency in particular is not really understood by most people as an actual, neurological disability,” she says. “It’s largely seen as the product of being nervous or shy or deceitful… When I say stuttering is a disability, it helps people to understand that it’s as constant and out of my control as, say, blindness or deafness.” Not only does the “disability” label enable stutterers to better access the care they need and advocate for themselves, it can also help them find community—which is crucial for disabled people, who report being significantly more socially isolated and lonely than people without disabilities.

*

When you’re able to pass as fluent, “coming out” as a stutterer can be a fraught decision, and many covert stutterers conceal this part of themselves. In my most recent relationship, for example, I went four years without ever discussing it with my partner. My stutter feels like a core part of my identity, and yet it’s something I’ve generally kept private, out of fear that being open about it would change the way others see me.

While Stewart openly identifies as a stutterer now, she hasn’t always. “I have actively hid [my stutter] before, from people I cared about quite a bit,” she says. Covert behaviours save her from both social and physical strain, meaning that when possible, passing as fluent is usually the easiest option. “It is much more difficult to be disfluent than it is to be fluent,” she says. “Whenever I choose to pass, it’s for my own comfort, not for anyone else’s.”

Plus, coming out can make covert stutterers vulnerable to discrimination. When Kittilstved was applying for a major in linguistics, she approached the department head and told him about her stutter, as well as her dream of becoming a speech language pathologist. He replied that she needn’t bother apply, as the program wouldn’t accept a stutterer—according to him, parents wouldn’t entrust their child’s treatment to someone who stutters themselves. Kittilstved was crushed. “That was the first time I really told someone I stutter…and it had a really negative outcome,” she says.

Kittilstved ended up becoming a speech language pathologist anyway, applying for grad school years later at the encouragement of a supportive anthropology professor who noticed her recurring interest in the social impacts of stuttering. Nowadays, she is almost always open about her stutter, at least with people she feels safe with. “I put it on my dating profile and I bring it up in conversation pretty much immediately,” she says.

Still, the reality is that she hides her stutter in some situations. “It’s so easy to be like, ‘all your avoidance behaviors are wrong and bad, let’s just be open and stutter’…but that’s not the world we live in,” she says. “Especially when you have intersectional identities—I’m a woman, I’m queer, and I stutter and have other disabilities like ADHD, so I don’t always feel safe to be totally open…I just try to lean into the nuance of it, because it’s so complex being a marginalized person in our society.” Even as the disability justice movement flourishes, “coming out” remains a complicated choice for people with invisible disabilities.

*

Ever since childhood, I’ve devoured any scant media representation of stutterers I could find: Bill from It, Merry from American Pastoral, King George VI from The King’s Speech. But recently, I’ve noticed an uptick in stuttering content: essays in mainstream publications, books from Big Five publishers. Not to mention that one of the largest global superpowers has elected a person who stutters as president.

All of this has given me space to begin reclaiming my stutter and reimagining how it might fit into my identity. In addition to writing about it, I’ve also begun speaking with my family about how it impacts my life, and have even begun opening up to some of my friends. As covert stuttering gains recognition, I feel like I have permission to accept that my stutter is an intrinsic part of who I am, whether or not the people around me know it.

Covert stutterers might not see themselves in conventional disability narratives, but recovery narratives might not quite fit either. “There is no ‘recovering’ from stuttering,” Stewart says. “There’s no pill, no surgery, no way to get rid of a stutter… but there is recovering from the shame and self-hatred that stem from stuttering. So that is the recovery that I’m always focused on.”

As for me, to return to the question of whether my stutter has “magically disappeared,” I’d say no, or at least, not exactly. Yes, I’ve found ways to conceal it, but I’ll never outgrow my stutter, despite what my doctors repeatedly told my parents. But maybe I got something better than growing out of it—I grew alongside it, my identity inextricable from the way that I speak.

Fashion spaces have long excluded people who aren’t straight, white, cisgender, able-bodied men. But for many disabled folks, the field also represents opportunity—a place where it’s possible to crip, or challenge through a disability justice lens, dominant understandings of disability and gender.

A new project called Cripping Masculinity explores how disabled men and masculine people build and reimagine their identities through fashion. The project team, which consists of researchers from Toronto Metropolitan University, the University of Alberta, and Parsons School of Design in New York, invited disabled folks to participate in interviews about clothing, outfit creation workshops and a fashion exhibition in Toronto earlier this spring. By interpreting participants’ everyday experiences of dressing as a form of worldbuilding, the project centres the creativity and wisdom of disabled folks as they use fashion to create the communities they want to see.

Tobin Ng caught up with three Cripping Masculinity participants—Sean Lee, Pree Rehal and CX—about notions of masculinity, what a crip utopia might look like, and more.

TOBIN NG: What does cripping the idea of masculinity mean to you?

SEAN LEE: As somebody who grew up visibly disabled and came into their queerness, thinking about crip as a reclaimed term that centres disability made me reevaluate my relationship with my body and my masculinity. Fashion played a big part in how I thought about the ways my body does or doesn’t conform to the ideals and standards that are often emphasized in queer communities, specifically in mainstream gay media. Because I’m queer, disabled and racialized, there are many ways in which my body doesn’t get represented in mainstream fashion.

I really resonate with the way queer and crip folks hack their fashion. They found a way to embrace fashion and own the stares that people give to bodies that don’t conform. I think of it as a form of crip drag or casual guerilla activism. It’s a way to question how bodily difference is taken, accepted or rejected by the mainstream.

PREE REHAL: Gender is fake, but our socially constructed ideas of masculinity are limited to a very small set of characteristics, especially in the West. Being big and strong and able-bodied is really central to what that looks like. So challenging masculinity is inherently tied to transness and gender diversity. It’s being our authentic selves, and really breaking away from white supremacist ideas of how we’re supposed to look and act.

For me, it’s also really connected to my inner child. What did I want to wear when I was being told what I had to wear? What did I wish I had when I didn’t have a concept of money, or when I wasn’t able to buy things for myself ?

CX: I’m excited by the concept of cripping masculinity. I love fashion, l love clothes, and I love expressing myself as a crip masculine person. Crip masculinity really speaks to my femme guy style and the ways in which being a femme, transgender non-binary, disabled guy can disrupt and challenge masculinity.

When it comes to fashion, it’s my way of not giving a fuck. It’s about protecting my body, making my body feel well in navigating the world.

TN: What does cripping masculinity look like in your everyday dress?

CX: I’ve started wearing wigs and exploring makeup. I love wearing lots of colour, and that doesn’t feel binary to me—it doesn’t feel masculine or feminine, it feels celebratory. It feels like an expression of myself as a crip person, as a queer person, and as an artist.

As someone who’s read, and sometimes mistreated, as a queer crip guy in the world, I use fashion as a protective force and as a way to express my resilience and fabulousness.

PR: I crip masculinity through the simple act of being. As someone who is autistic, my concept of gender is very loose. I don’t really understand the value of that kind of categorization for myself, and it’s the same thing with sexuality. I self-identify as being trans, non-binary, gender non-conforming, agender, a demiboy—my experiences fall into a lot of different things under the trans umbrella. So anything I do is cripping masculinity, because I’m crip, disabled and transmasc. A lot of times, it looks like cargo pants and sweatsuits, but it’s still that when I’m wearing a tank top and if I decide to wear a dress. It’s inherently anything that I wear.

SL: It changes all the time, and I think that’s part of it—freedom to do what you want. For me, it started off as a way of rejecting the ways in which men’s fashion was so built around a particular type of body. As an artist and curator, I learned about things like crip aesthetics and disability aesthetics, and how they shifted our understanding of perfection and beauty. My fashion sensibility centres around embracing the disruption that disability can bring into a space, and thinking about difference as a generative place to question what we think about aesthetics. There’s so much value in finding different ways of expressing things like gender and sexuality and a crip sensibility.

Long ago, I was wearing a lot of flexible clothing and dresses. Instead of trying to conform the body to a certain ideal, those shapes work with the body, emphasizing aspects of difference in ways that could be interesting and beautiful, or my version of beautiful. As a disabled person, my back curves, my shoulders aren’t even and I’m quite short. A piece of clothing worn by a six-foot model walking down a runway is going to look very different on me. But rather than thinking about clothing as being suited for one particular body, I’ve been trying to see how clothing can adapt to different bodies.

TN: What connections do you see between queer and crip identities?

PR: Something that stood out to me from the Cripping Masculinity project was a conversation I had with a researcher about queer flagging. Back in the day, when homosexuality wasn’t as accepted as it is now, folks would use bandanas or handkerchiefs in specific colours to subtly let others know about their sexualities and preferred positions, and if they were interested in cruising. Today, when you see someone with a carabiner on their belt, you’re like, ‘Oh, maybe they’re queer?’ or ‘That’s somebody who’s a bit fruity.’

With disability, I think there’s a similar kind of signalling we do with our community members to be like, ‘I’m one of you, we’re the same.’ It comes up when you see someone with a cane, or when you hear someone speak and you’re like, ‘Oh, there’s something dyslexic about that,’ or ‘That feels really similar to the way that I talk, think or identify.’ If I see someone at a workshop and they’re using a heating pad, it gives me the idea that they may also experience chronic pain or fibromyalgia. I’m going to go sit with that person as opposed to everyone else that’s sitting upright or in cliques.

SL: For me, crip and queer identity are inherently linked. There’s a disability activist named Mia Mingus who talks about how ableism has to be embedded in our analysis of oppressions, because it upholds the other ways oppression is articulated. An ableist society imagines only one type of body, creating a mythical norm against which other bodies are judged. That norm provides a foundation for other forms of oppression. For example, ableism is used to justify heterosexism by casting queer bodies as undesirable. Recognizing this connection between disability and queerness can help us reject narratives around masculinity and other things we’ve been taught.

CX: My queerness relates to an openness in my body, my sexuality, my gender, and my artistic practice. I enjoy being around the uniqueness of other people in queer, crip communities. It supports how I am. I gain energy and nourishment from uniqueness, and I learn so much.

In that way queer and crip have similarities. My queerness, my gender, my disability are interrelated. As an artist, the art in me is informed by my queerness and my crip identities all at once.

TN: What does a crip utopia look like to you?

CX: I have lots of fantasies of a crip utopia!

A crip utopia for me is visionary, is fantastical. As a visual person with cognitive disabilities, bright colours help me navigate life. Things would be brighter, more colourful, and less boxy. There would be lots of graffiti and colours and animals. Instead of cars everywhere, we would see more wheelchairs and bicycles. Different ways of moving around, different choices.

Our bodies would be celebrated, not defined by or against those who are able-bodied and minded. Disabled people would make greater decisions about where and how we live, and be prioritized in how the world is designed. The people leading society would be disabled, creating crip- friendly places to exist in everyday life—from grocery stores, to living spaces, to streets.

We would all have things to offer. We could cocreate things that are fabulous and wonderful. We could acknowledge our history of being hurt. We wouldn’t be afraid of each other.

I feel love and strength being around people with disabilities. It wouldn’t be such a big deal to be disabled. We wouldn’t only be in communities with other people like us, but we wouldn’t have to hide. Those with and without disabilities would feel empowered to take a lead. We’d be open to mingling with each other. We would be interdependent, naturally. We would offer each other help and support and care without question.

My crip utopia feels very outside of the world we live in right now, which is so directed by a capitalist mindset. This isn’t accessible for crip communities. But anything is possible within my realm of a crip utopia. It’s all about more people being free.

PR: I feel like a crip utopia would look like those memes about artists wanting to go live in a forest or on a farm with their 10 friends. But in reality, when I’ve had the privilege of going on trips with some of my disabled and chronically ill family, something I’ve noticed is that we actually do need a lot of other kinds of considerations and support. So I don’t think living out on a farm would be the best thing for us, because a lot of us can’t really do that kind of labour. But I think some kind of community living that is independent but also interdependent, and doesn’t shut us away from reality would be ideal. I know that crip utopia would definitely be centred around community relations, and it would be led by the most marginalized in our community, and definitely by Black and Indigenous disabled folks.

SL: I love the idea of utopias, because they’re sites of possibility. There’s a queer theorist named José Esteban Muñoz who talked about the idea of queerness as a horizon. It’s this notion that as long as heteronormativity is present, queerness is an ideality. We may never fully be queer, but we can feel this warm illumination of queerness on the horizon. I really think about that application as a crip horizon—elsewhere and elsewhen, as Muñoz would say, in which disability is not only imagined, but embraced and dwelled in.

It’s a complicated horizon because there’s a diversity of disabled folks. There’s so many different ways of thinking about access and how those identities and lived experiences come together with a tenuous throughline to create a whole disability culture. The question is, what’s the culture that can be expressed in the future? The horizon represents a place that we don’t fully know or understand, but one where we can fully be ourselves. And fashion plays such an important part in imagining what that’s like.

We as disabled folks are unruly and noncompliant. We don’t fit into a lot of the structures that have been imagined for only one type of person, that state you have to behave and act in certain ways in order to be part of society. But the idea of a horizon rejects the story of disability as having no place in the future. We’re never going to be at the horizon, just as we’ll never be ‘fully accessible.’ But we’re always moving toward it.

Photo by XURZON; Design by Valerie Thai

At least 595 people died in B.C. from heat-related deaths during the summer of 2021. Most of these occurred during the province’s “heat dome” event, which took place from June 25 to July 1, and saw temperatures rise as high as 49.6 degrees Celsius. Many climate activists and researchers believe that was just a taste of what’s to come as extreme weather events cause mass death with increasing frequency.

When climate-related mass deaths come, they’re expected to affect disabled people in greater numbers. While a full coroner’s report detailing how many of those who died in the 2021 heat wave were disabled has yet to be released, Sébastien Jodoin, a Canada Research Chair in Human Rights, Health, and the Environment at McGill University in Montreal and the founding director of the Disability-Inclusive Climate Action Research Program (DICARP), expects it to mirror the coroner’s data from Montreal’s 2018 heat wave. That event killed 66 people, 72 percent of whom were chronically ill.

“When you looked at the coroner’s report of people who died,” says Jodoin, “they found that a quarter had schizophrenia.”

Jodoin, who pivoted his research to looking at how disabled people are left out of climate planning after he developed multiple sclerosis (MS) at 33 years old, notes that a common medication that schizophrenics take makes them more sensitive to heat. However, he believes that what ultimately increases schizophrenics’ risk is that they are often poor, isolated, and harder to reach when it comes to government communication.

“They actually would have needed some sort of additional measures to be safe during this period and there was nothing in place to protect them,” Jodoin explains. “So, it kind of illustrates both that there’s vulnerability and … lack of planning.”

Climate change is currently affecting disabled people in Canada and around the world especially hard. Rolling blackouts caused by overtaxed power grids are disrupting the use of ventilators or other assistive devices, extreme temperatures and smog are causing flare-ups for people who have respiratory or autoimmune disabilities, and emergency response planning for extreme weather events often do not consider the needs or particular vulnerabilities of disabled people. Even increases in the toxicity of controlled drugs causing more disabled people to die from overdoses can be linked to the climate, since climate change has been linked to increased drug use. The climate future is likely to be filled with preventable deaths of disabled people. Yet, climate change planning rarely includes disabled people, many of whom are vulnerable in multiple ways because of poverty or other intersecting marginalizations.

Jodoin, who has analyzed climate adaptation policies around the world, found that disability was rarely mentioned in these critical national and international documents. What’s more, disabled people are sometimes physically excluded from the negotiation table.

“[Climate negotiations are] not accessible sometimes to wheelchair users,” Jodoin says. “There was an incident last November where an Israeli minister [Karine Elharrar] … was not able to enter the negotiation room because she was a wheelchair user.”

Jodoin notes that disabled people aren’t discussed in most of Canada’s national adaptation policies for climate change, the set of government publications that cover everything from policy frameworks, to platforms, to in-depth plans for specific departments or ministries. He says these frameworks do, however, often mention Indigenous people and women as potentially being more at risk.

That omission means that disabled people will be less likely to get centred in planning. But Susana Deranger, a climate and disability activist of the Athabasca Chipewyan First Nation and a member of the Indigenous Climate Action steering committee, an Indigenous-led organization working to find solutions to climate change, also believes it neglects the fact that disabled people are disproportionately Indigenous.

“Systemic racism makes experiences of disability much worse,” they say. “Thirty percent of Indigenous people are disabled…. That’s an extremely high number.”

Deranger worries that climate change or climate emergencies will make it harder for disabled Indigenous people to access health care, traditional foods, and even medical care and supplies in remote Indigenous communities.

Deranger isn’t surprised that disabled BIPOC people are being left out of these plans. They believe that the same forces that motivate ableist beliefs that disabled people are disposable are also what led us to the climate catastrophe—the colonial belief that the land and people are important only in how they’re instrumental to capitalism.

“Capitalism and colonialism go hand in hand and are linked to everything that’s wrong,” they say.

Andrea McDowell, who works on air quality and climate change at the municipal level, believes more preparation needs to go into protecting disabled people from climate impacts.

“Disabled people are the largest minority group in Canada,” she says. “That’s a very large number of people who are being left out of important and even life-saving work.”

McDowell’s 18-year-old, Echo McDowell, has a rare form of dwarfism and worries about the ways she’s already being left out of emergency planning. Echo recalls an example where she was left behind during a school fire drill because no one knew what to do to get her to safety.

“I had to spend a while making specific plans with the administration so that they wouldn’t end up leaving me in the building,” she explains.

Being left behind in an emergency is McDowell’s fear for all disabled people. “You look at Hurricane Katrina and the people who died were often disabled and that was largely because the response didn’t take … the needs of disabled people into account,” she says. “If the response isn’t accessible, then disabled people will die.”

It seems like governments aren’t making evacuating disabled people a priority, are creating emergency shelters that aren’t accessible, are not planning for medical care or vital medicines, and are stockpiling food that disabled people with dietary requirements can’t eat. There are so few ways that disabled people’s needs are being included in climate emergency planning.

“[People often say] we need to consider disabled people. But there’s so little representation in the organizations and the committees that are making those decisions,” says McDowell.

While a diverse representation of disabled people should be centred in climate movements, disabled people are not just often left out—they’re also sometimes seen as the problem.

For example, bans on plastic straws have trampled over disabled people’s needs, single-use plastics that save disabled people’s lives are often demonized, and one Ontario doctor has called for a reduction in inhaler prescriptions to combat climate change. Climate movements often target the things disabled people need to survive—something that’s been referred to as “eco-ableism.”

“My life is dependent on single-use plastics,” says McDowell, who is a Type 1 diabetic (T1D). “So, I spent a lot of time thinking about the environmental movement … and ableism.” Due to the use of testing strips and needles, managing T1D requires the use of a significant amount of single-use plastics.

She believes that climate justice and environmental groups need to do more to reach out. “Look around the table. Recognize that there’s a very large and important constituency that’s not being included, and fix it,” she says. “We have completely overlooked disability for the past several decades or centuries. Maybe it’s time we find some local visibility initiatives relating to the environment or climate and support them.”

Deranger agrees that the environmental movement is not doing enough to make space for disabled people—or to include those who are marginalized in other ways and who are also disabled. Despite efforts to include more Indigenous people and people of colour in climate activism, they say it often leaves out disabled people in those groups. “There’s nothing like Braille or ASL or anything for them to participate,” they explain. “When they’re planning venues, they’re not thinking about disabled people. If there’s rallies and marches and people can’t walk very far with them, they’re never planned [for].”

Deranger doesn’t believe it has to be that way, citing an experience at a rally in Mexico where there was a truck participants could hop onto if they couldn’t walk or got tired. “But I don’t see that [here],” they say.

The movement loses out when it doesn’t include everyone, according to Deranger. “The solution to climate justice is to listen to Indigenous Peoples but listen to Indigenous disabled people as well,” they assert. “[Inclusion is seen as] another burden to fighting rallies, fighting marches, planning events.… It’s already overwhelming. So … we can’t add that on. We don’t have the resources. We don’t have the capacity. Well, make it.”

In 2020, American disability activist Alice Wong gave a talk called “The Last Disabled Oracle.” In it, she discussed how disabled people sounded the alarm during the pandemic about the importance of masks, accessibility, and interdependence.

“It became very clear who was considered disposable and who was not,” she said in her talk. “The casual ableism, racism, and ageism went unchecked in debates around restarting the economy with terms such as ‘acceptable losses’ and ‘high risk’ as if those lives weren’t worth living or saving.”

Wong later tweeted: “Disabled people know what it means to be vulnerable and interdependent. We are modern-day oracles. It’s time people listened to us.”

Many activists are worried that the disregard public health officials are showing to the concerns of disabled people during the pandemic will be mirrored in the climate future. But, that future could be made easier if only more people listened to disabled people. Rather than being sidelined, many disabled activists argue, they should be leading government efforts to adapt to a changing climate.

“[As a disabled person,] you’re already existing in an environment that is hostile towards you, and that’s not an experience that abled people have,” says McDowell. “I think there’s a lot to learn there about the kind of adaptability and resourcefulness and problem solving that disabled people often need to do just to exist in the world.”

Deranger also sees disabled people as holders of wisdom others could benefit from. “Everybody has to realize that disability is … a social justice issue just like climate change is,” they say. “Listen to disabled people—disabled people live with and recognize climate change just as much as anyone else andif you want to learn about coping mechanisms and resilience, go to disabled people, listen, and learn.”

In January 2021, I pitched a scripted television series to the CBC. My story focused on several Deaf characters, not only because I myself am Deaf, but because disabled characters seldom form the nucleus of scripted TV shows.

Reality TV, however, is a different story.

Reality series such as Deaf U, The Undateables, Born This Way, and Little People, Big World prominently feature disabled people. Scripted series, however, seem to feature just one disabled character at a time, if they have them at all. Midnight Mass and Speechless are but a couple of examples, with This Close, a series created for Sundance TV by Deaf actors Shoshannah Stern and Joshua Feldman, being a notable exception.

In my pitch I spoke about the dearth of disabled characters in scripted series—and about how the disabled characters that do exist are usually tokenized and reduced to stereotypes.

Even though there are over one billion disabled people around the world, making them the world’s largest minority with over 15 percent of the population, they make up a much smaller percentage of on-screen talent, and even less behind the camera. A 2016 study by the Ruderman Foundation stated that fewer than one percent of television characters in scripted series were disabled, with five percent of these roles filled by actual disabled actors. A follow-up study from 2018 revealed an improvement of about 20 percent authentic casting on both network shows and streaming services.

Why this discrepancy between reality and scripted series?

In their book Narrative Prosthesis, Sharon L. Snyder and David T. Mitchell write that non-disabled people frequently impose on disabled people to explain themselves—that is, to tell the story of how they became disabled. Reality TV feeds that need: when non-disabled people watch Deaf U or Born This Way, they satisfy their curiosity. Through the safe distance of the screen, these shows offer non-disabled viewers a window into disabled people’s lives.

Reality TV, however, is limited in its impact. Most of the reality TV series I’ve seen focus on white, cisgender, heterosexual people; Deaf U, in fact, attracted criticism for its lack of BIPOC and LGBTQ2S+ representation. Reality TV also restricts the way we discuss and think about disability in our daily lives. When we see an actor in a fictional role on a popular series, that actor can occupy a specific space in our heads, much different from the space afforded by reality TV. They occupy a sort of fantasy space, a dream space, the place where archetypes and ideas and desires and fantasies all collide, and the actor on screen becomes larger than life. Billy Porter, Kawennáhere Devery Jacobs, Regé-Jean Page, Daniel Levy, and Michaela Coel are all larger-than-life figures who have created beautiful characters through their respective scripted series.

It seems easier to grab and maintain people’s attention through fictional narrative; thus, we must tell our stories through fictional lenses. Reality TV can have a detrimental effect on disability’s cultural presence if it is the major format through which disability is represented. It locks us down, rendering us easier to control, separating us from that beautiful dream space. We can be on TV, but it has to be in this specific area, and we cannot cross that boundary until someone else allows us to. There seem to be few (or no) ramps, Sign Language interpreters, guide dogs, or care workers allowed in that particular realm. Disability is too real, too different. Scripted TV series create figures that become part of our cultural lexicon and allow us to process the events of our lives and project our fantasies and emotions. We seldom see disabled artists on the cover of Variety or Hollywood Reporter. We must remain governable, out of sight.

In my pitch to the CBC, I ended by saying that featuring disabled characters in prominent roles would have a tremendous impact, and although my pitch was turned down, my resolve to bring a series to screen remains the same.

It is crucial for us to dream and control our own stories and see ourselves occupying other selves and other worlds, as opposed to continuously having to prove our humanity through reality TV. And since television is such a popular and successful art form, we need scripted TV series centred on disabled characters.

Before March of 2020, I found myself on a video conference once or twice a week. Back then, it still had something special to it, helping me connect to colleagues all over the world. Then, the world turned upside down because of COVID-19, and I found myself spending several hours per day on video calls to manage remote teams from home—let’s say the past excitement of video conferencing swiftly disappeared.

Video calls have been around for decades, with webcams and software such as Skype becoming popular in the late 1990s and early 2000s. The impact of Skype was so important that it inserted itself into our vocabulary: videoconferencing became “Skyping.” The pandemic redefined the use of video calls, as people around the world were forced to shelter in place and practice social distancing. The app Zoom, in particular, has since become a staple of both remote work and gathering with family and friends, even taking Skype’s place in our vocabulary and spawning new concepts, such as “Zoom fatigue.” Put simply, Zoom fatigue is when one feels tired from having been focused on video calls for too long. Video calls can be overstimulating: the feeling of being watched constantly, the strain from processing multiple social cues in the gallery of faces, and delays in both audio and video, contribute to an overall feeling of exertion.

After about a year and a half of remote work and social distancing, videoconferencing took a back seat as several new audio-only apps were released, gaining incredible popularity. The app generating the most hype in spring 2021 was Clubhouse, a networking app based on voice. Clubhouse users can create chat rooms, or drop into others’ rooms to listen or participate in discussions, often with complete strangers.

Other apps like Teamflow and Kumospace, meanwhile, recreate an office’s environment and let their employees mingle more easily. They offer an alternative to Zoom fatigue and recreate serendipitous moments like chance encounters and coffee machine conversations. The audio trend has already been reported on by national outlets such as Wired, identifying audio as the future of social media and communications.

Is the future really audio? While the trendiness of audio-centric apps is exciting, they raise important concerns regarding accessibility for the blind and vision-impaired as well as Deaf and hard-of-hearing communities. These demographics are expected to grow over the next decades due to an aging population as well as other factors; vision loss in particular is predicted to double in the next 25 years, according to VISION 2020: The Right to Sight, an initiative launched by the World Health Organization and the International Agency for the Prevention of Blindness. Moreover, there is no credible census available to determine exactly how many Canadians are living with a disability. According to the Canadian Association of the Deaf- Association des Sourds du Canada (CAD-ASC), the census usually provided by Statistics Canada isn’t available in ASL or LSQ (Langue des Signes Québécoise), and uses convoluted language that leads to misreported numbers. Wissam Constantin, the vice-president of Governance and Membership of the CAD-ASC, explained the importance of sign language to the Deaf population: “Often people will only refer to spoken languages when it comes to being fluent or multilingual, for example English. But sign language [ASL] is not just a bunch of gestures or movements; it is a true language with a structure, grammar and syntax.” Using closed-captioning on calls or communicating by email instead of having an interpreter is not being absolutely accessible, Constantin says, as it doesn’t give the individual the ability to choose their preferred method of communication. Without any closed-captioning or video capabilities, audio-only apps can be hard, if not impossible, to access for Deaf populations; as for blind and vision-impaired populations, difficulties lie within the design of the apps and their compatibility with screen readers. Screen readers are speech software that read the text displayed on screen and help the user navigate commands, buttons and even images, and alternative text and accessibility must be built into the apps to allow for compatibility.

Unfortunately, accessibility is too often an afterthought when developing and designing new apps or features, and many popular apps do not meet the web accessibility guidelines, which are a set of recommendations to ensure content is accessible to a wider range of populations. Discord, which started out as an audio chat service for online gamers but recently rebranded as a place for everyone to hang out, has been criticized for how they approach accessibility. While they have been adding features to help vision-impaired users better navigate the app in recent months, it’s been slow progress, and it clashes with their fresh branding. Twitter came under fire last year when they launched their own audio feature, Spaces, which lets users record their tweets instead of being restricted to 280 characters, because it lacked accessibility. It was revealed that the company doesn’t have a team dedicated to accessibility, and that ensuring features are accessible falls to volunteer employees.

Clubhouse is exclusive not only in design: as an invite-only app, it gives out invitations to members so they can invite their friends. In short, chances of getting on there are slim, and as an audio-only app with no closed-captioning feature, it de facto excludes hard-of-hearing and Deaf people. However, it’s not the only social media app whose concept is exclusive in nature. Instagram, for example, can be of little interest for blind and vision-impaired individuals. Marcia Yale, the national president of the Alliance for Equality of Blind Canadians, confesses to loving Clubhouse because “it levels the playing field. No one can see me … it’s not a two-tier system. I understand that the Deaf community would probably not like Clubhouse, but there’s Instagram, which is mostly pictures, which I’m not crazy about.” The world of social media is certainly not lacking options, between Facebook, Instagram, Twitter, and Snapchat, to name just a few. Asked if she thought there were enough options to cater to everyone, Yale says: “I think there’s room in the world for apps that work for everyone, apps that work for some people. I think there’s room enough.”

Constantin expressed a similar sentiment, saying that the Deaf and hard-of-hearing community has, out of sheer necessity, been using other apps to communicate, such as Marco Polo, a video chat app. Newcomers such as Clubhouse are not taking those spaces away, though they remain inaccessible to Deaf people.

It’s another story when it comes to work or study, and that’s where accessibility is still a big challenge. When joining a new company, an individual doesn’t have the luxury to choose which communication software their employer is using, which means they can easily be left behind. It would seem that accessibility is not only a question of accessible software, but accessibility-minded leadership as well.

Constantin gives an example of such a situation members of CAD-ASC often encounter: “Deaf individuals who work in [a]predominantly hearing workplace will be told that there are captions, or they’ll have a meeting and say to that Deaf individual: ‘We’ll just send you the notes,’ rather than having them included in the meeting. And if you have any concerns, rather than those being brought up in the meeting, as part of the meeting, just send an email with your concerns instead of providing that actual access to the meeting.

Now, sometimes those meetings are on the phone, they’re not a video chat, right, and that is also another barrier.” Teamflow and Kumospace create virtual environments and use proximity chat to create little bubbles of conversation, in a similar way an in-person event would, allowing participants to leave conversations and join new ones easily. Teamflow didn’t respond to requests for comment. Kumospace co-founder Brett Martin was happy to discuss their product. Martin readily admitted that Kumospace had plenty of room for improvement, but that accessibility and inclusivity were paramount to the start-up: closed-captioning and image alt text were built into the app’s design, making it easy to use and navigate for Deaf and hard-of-hearing as well as screen reader users.

To say that the future of social media and communication is audio is digital ableism, which means it is designed with abled individuals in mind and leaves disabled people to find solutions to be able to use the apps. While a part of the population can partake in the hype and excitement brought by the likes of Clubhouse, others are relying on very different apps to be able to connect with the world.

Whether a perfect, accessible social media app exists or not is up for debate. Both Yale and Constantin agree that Zoom is the best option in terms of overall accessibility for remote communication. At the end of the day, the specific app being used is not the most important consideration, but rather accommodating people as individuals is. As Constantin says, “Don’t pick the accommodation for the person who’s being accommodated. Instead, ask them the way they would like to be accommodated.”

ILLUSTRATION BY MATTHEW DALEY

Judy Kerr was only 30 years old when she found herself living in a nursing home in 2017—unable to find accessible, affordable housing in Toronto, she had no other choice.

Kerr, who uses a wheelchair, was left unhoused after a dispute with her roommate, a renter from whom she was subletting. Unsure of where to go, Kerr spent the first night in a hotel, and on the second, went to a hospital, where she was connected with the nursing home where she spent the next three months.

At the time, Kerr’s income meant she didn’t qualify for community housing—but she was also unable to afford adequate housing in Toronto’s rental market, given the cost and scarcity of a fully wheelchair-accessible apartment. So she was stuck, like thousands of Canadians with disabilities across the country, settling for inaccessible and inadequate accommodations that worsened her quality of life.

“It definitely was challenging,” she says. “All of a sudden, because I had been moved, a lot of my caregivers couldn’t come in and help me. So I had to rebuild this team, once I did get moved to somewhere more stable.”

Later that year, when Kerr was finally offered co-op housing advertised as wheelchair-accessible, things were supposed to get easier for her. But it turned out that the co-op apartment didn’t have a roll-in shower she could use.

With this essential part of everyday life unavailable to her, Kerr had little choice but to move once again, eight months later, to the first fully accessible home offered to her next—even though her new home would be almost 120 kilometres away from Toronto, her family, and the care network and employment she had set up for herself.

That’s how Kerr ended up in Fergus, Ontario, a township of approximately 20,000 people. While her current home is fully accessible, she says her environment has worsened significantly, and the distance and income limits to qualify for the housing mean she is no longer able to work.

“I swear [Fergus] is about 20 years behind in terms of beliefs of disability—living here is the first time I felt truly disabled,” Kerr says. “There’s no accessibility resources, there’s no transportation out here.”

The Toronto Community Housing Corporation (TCHC) said in an email that of the 58,500 units they manage, approximately 14,000 have been modified in some way to be accessible, ranging from specific features to full renovations, alongside another 40 fully accessible units developed in partnership with city and private builders.

While this accessibility rate is better than other parts of the country, the problem lies in demand: there were, as of 2020, more than 81,000 people on the waitlist for social housing in Toronto, more than a third of whom are seniors who are likely to have access needs, or require features to make a space accessible.

The crisis in accessible social housing is inherently tied to housing affordability, among other factors, across the country. If people with access needs are unable to afford adequate private housing, they have no choice but to turn to publicly-owned accommodations, but those with incomes are often lower-priority on an already overburdened waitlist that ultimately fails to meet the needs of low- and middle-income people.
The resulting marginalization is doubled for women, who have higher rates of disability, and especially Indigenous women, who have higher reported rates of disability than non-Indigenous people. Black, Indigenous, and other racialized women also experience the intersection of medical racism that impacts their healthcare experiences, and housing precarity because of low wages or insecure employment.

“There’s a lack of affordable housing, there’s a lack of housing that’s not overpriced in neighbourhoods where it’s accessible for people who need services, and can’t necessarily be an hour or 90 minutes away from work, or from where they get resources like community support,” says Karine-Myrgianie Jean-François—director of operations and projects at the DisAbled Women’s Network of Canada in Montreal.

“A lot of racialized women who have disabilities don’t have access to diagnosis, which can sometimes help to move forward, to get on a housing list,” she adds.

With the cost of living rising nationally, wages stagnating and work growing increasingly precarious for low-income communities, and now with the devastating impacts of COVID-19 and the resulting evictions crisis, these problems are only getting worse.

In 2020, Statistics Canada released information on the availability of barrier-free publicly-owned housing across the country. Barrier-free is defined by Statistics Canada as meaning “a building and its facilities can be approached, entered and used by persons with physical or sensory disabilities”—it’s one definition on a spectrum of accessibility terms ranging from “visitability,” which offers basic access features, to “universal design,” which is supposed to be accessible to everyone, and which shouldn’t require modification in order to be barrier-free. It’s important to note, however, that while universal design caters to the largest range of needs, it’s not a guaranteed solution because of people’s unique circumstances.

Statistics Canada’s data—only available for a few provinces—seems to suggest that some provinces had seen
a decrease in publicly-owned barrier-free housing between 2016 and 2018, the last year for which data is available.

But one analyst working on the dataset, Lee-Anne Jennings, explains that because the definition of accessibility can be vague, it leaves the national infrastructure survey open to interpretation from year to year.

“Analyzing the data, we did notice that this definition [of barrier-free] can be possibly interpreted in different ways by different respondents, as evidenced by the change in response,” Jennings says. “One possible issue might be someone considering [that] the whole building must be barrier-free, as opposed to some units.”

Alongside differing response rates, this accounts for the changes in accessibility rates between the two years.

In Ontario, for instance, the response rate for semi-detached houses and 5+ storey buildings rose between 2016 and 2018, which revealed clearer information: the percentage of publicly-owned, barrier-free housing in these categories was lower than initially thought. Only 1.2 percent of semi-detached homes and 17.7 percent of 5+ storey buildings publicly owned in Ontario are barrier-free.

In contrast, the response rate in New Brunswick fell from 100 percent in 2016 to 0 percent in 2018.
Jennings notes that a more specific definition would be useful in future surveys. But it’s clear that there is yet to be a unified national understanding of what accessibility is—and therefore no way to uniformly implement it.

Standards for accessibility across the country vary on municipal, provincial and national levels, and within different human rights frameworks. For instance, a 2012 review of the National Building Code found national guidelines to be out of date compared to provincial and international standards, which led to significant revisions in the 2015 Code; but regulations like the mandatory minimum number of accessible units in new developments varies by province, for instance, five percent in B.C. or 15 percent in Ontario.

Neither of these minimums are enough to meet the needs of Canada’s growing elderly population, advocates have pointed out. A report by the Rick Hansen Foundation estimates that the proportion of Canadians with disabilities will rise at nearly double the overall population growth rate over the next decade.

New developments are some of the best environments to build in adaptable and accessible features, because older housing stock often can’t be easily adapted. But with provinces already failing to house those with access needs, these minimal rates for new housing developments indicate a failure to preempt what Canada will need in a decade’s time.

“You’re going to grandfather certain things in,” said David Kron, executive director of the Cerebral Palsy Association of Manitoba. “But when you’re building [new developments], just put that spin on it: how do I make this a truly universal design for everybody? So that the next generation has those options on where to live comfortably?”

Despite the gaps in access, public social housing regulations are stronger and more accessible than private housing across the country. Every social housing corporation that responded noted that they have funds available should a tenant need to retrofit their unit to be more accessible—within certain limitations dictated by the home’s design. On occasion, municipalities will also introduce bylaws improving upon provincial housing guidelines.

For newer projects and renovations, the National Housing Strategy put forth by the Canada Mortgage and Housing Corporation (CMHC) stipulates that 20 percent of new affordable housing units developed by the government’s housing development fund need to be barrier-free and use universal design principles. The accompanying National Housing Strategy Act, put in place in 2019 to hold the government accountable to the goals outlined in the Strategy, is the closest thing to nationwide implementation of accessible social housing guidelines, though the medium- and longer-term impacts are yet to be seen.

The CMHC noted in its guidelines that projects that go above minimum requirements will be prioritized in funding decisions, but the question still lingers as to why universal design isn’t implemented more thoroughly in new developments, with higher mandatory minimum requirements.

“Building a suite with universal design in mind doesn’t make it not attractive for somebody who doesn’t have a disability,” Kron points out. “It just means that everybody can use it.”

The cost of implementing universal design, while not insignificant, is lower than one might imagine. A 2015 study by the CMHC found that accommodating accessibility features in new developments raised the required area of the property by less than 10 percent, and expenses by six to 12 percent. But, even if the costs were higher, Kron notes,

“Good design is good design, right?”

“I use the analogy of back in the ’70s, when seatbelts were [made] mandatory,” he says, pointing out that people were skeptical of the cost and necessity of seatbelt implementation at the time. “Now, it’s a culture that everybody puts on their seatbelt. You don’t even think about it.”

Considering the myriad legislation at various levels of government, it’s clear there are efforts being made
to address the accessible housing crisis. But stories like Kerr’s are far too common. On the other side of the country, Lori Pederson’s experiences are strikingly similar—she’s faced these problems for the last 25 years.

Pederson, who contracted juvenile-onset Rheumatoid Arthritis as a child and has required 25 orthopedic surgeries over the course of her life, has been off and on B.C.’s social housing waitlists since the 1990s. Her income and employment status changed over the years: she spent a decade living in accessible co-op housing, and then for 15 years was able to live in her own apartment. In 2015, Pederson had to move back into inaccessible rental accommodations following income changes and lay-offs, and the struggle to find adequate housing began again—and despite being unable to afford accessible housing in Burnaby, she was told consistently that her income, which was below $40,000, was too high for housing support. Only in March of this year was she able to find subsidized, accessible accommodations, after a 2019 increase in maximum income level for people eligible for public housing in B.C., which is now capped at $50,000.
Pederson feels the parameters of who is eligible for housing support don’t match the lived realities of people with disabilities who have low or middle incomes, especially in cities like Vancouver or Toronto.

“Try and find a market-based apartment for under the price of $2,000 that’s accessible. That when you go in the front door, you can actually get in with your wheelchair. I’ve never been able to,” she says.

When the co-op housing sector was hit by funding cuts in the 1990s, Pederson knew that things were going to get worse. “It was commented on that this would ruin life for people of low income and disability […] and indeed, that’s exactly what happened.”

Austerity policies over the last two decades have shaped this crisis: overall, there’s been a drop in social housing provision since 1990, and when paired with cuts to other social supports over time, more and more people with disabilities have been put in precarious housing situations.

Until the layers of this crisis are addressed—unaffordable housing, inaccessibility, inadequate development standards and the lack of a national understanding of barrier-free infrastructure—people like Kerr, Pederson, and thousands of others will continue to live in limbo, with inaccessible temporary accommodations, and in anticipation of moving up the social housing waitlist. But they shouldn’t have to choose between housing and their work, families, or support systems—not when there’s so much that can be done closer to home.

Illustration by Jasmine Noseworthy Persaud

For some, we are entering a dystopian-like era, with pandemic and zombie movies feeling uncannily familiar. In May 2020, the BBC noted that the public has had an increased interest in dystopian fiction as a way to cope or understand the pandemic. But, if we really want to learn about how to survive this newfound dystopia we live in, we need to turn to disability justice activists for the knowledge and skills they can share.

As Patty Berne from Sins Invalid, a San Francisco-based disability justice collective, explains in her essay “What is Disability Justice?” in the book Skin, Tooth, and Bone: The Basis of Movement is Our People, disability justice moves beyond just garnering rights for disabled people and focuses on finding alternative solutions to the systems that create inequity and building new futures. Now that the pandemic has illuminated the cracks in our systems that have been failing us in an almost undeniable way, we need those alternative solutions in an immediate way.

Being a part of the disabled community, I knew that there were lessons we had to share if we wanted to have a chance at turning this dystopia into a utopia. So I spoke to other disability justice activists about what it means to live through disaster, how disability justice prepared them for this pandemic, and what shiny new futures we could be building.

For marginalized groups like the disabled community, our world has been a dystopia long before COVID-19 developed into the widespread issue that it is now. That has given us the advantage of not being caught by surprise by the lifestyle changes that the pandemic has imposed on society.

“This isn’t a dance I haven’t had to dance before,” says Rachel Romu, a disabled model and activist known for walking the catwalk at Toronto Fashion Week, and also one of the first activists who encouraged me to get involved in my own activism.
They are referring to the isolation and inaccessibility that many are experiencing for the first time in this pandemic. Romu is used to socializing and working remotely; they’re used to using food delivery services and having to make choices for the sake of their health.

And this is a sentiment that seems to be echoed from across various different disabled experiences. “I’m used to being isolated,” writes Sage Lovell, founder of Deaf Spectrum, a Deaf-led, Toronto-based organization that provides ASL interpretation and resources. “Like, I didn’t have much of a social life pre-COVID. I was always working and saving up money. And growing up, I’ve always been on my own, being around a hearing-dominated environment.”

Even so, being prepared doesn’t mean that the disabled community is less affected mentally by it. In fact, the response to accommodate COVID-19 safety guidelines ended up highlighting just how little effort was previously put into finding these same accommodations to include disabled people into society, such as remote access to work and social events or grocery delivery.

“It’s frustrating because pre-COVID, I had to travel a lot and even suggested to video call once in a while. But folks always needed to meet in person,” explains Lovell. “Now with COVID, we’re meeting online.”

“I feel like part of me is built for this, but part of me is struggling,” says Romu.

For many marginalized people, disaster and apocalypse are not one-time or future events, but historical, ongoing, and recurring, according to Myriad (who prefers to go by their first name only), the founder of The Wheelhouse, a community centre in Toronto for and by marginalized people, and a facilitator of disaster preparedness workshops. They pointed to a theory from Lawrence Gross, the Chair of Native American Studies at the University of Redlands, called Postapocalyptic Stress Syndrome as an example. For Indigenous peoples, they have already experienced mainstream apocalypse tropes such as invading forces and outbreaks of disease. Therefore they also have to create and imagine the new worlds they need to survive.

Activists from oppressed groups already have the experiences to learn from and improve upon, if we as a society would pay attention.

Speaking with other disability activists, one thing became very clear to me: we approach our own health, as well as public health, in a very different way to our nondisabled counterparts, even and especially, pre-pandemic. As Romu puts it, we have to find “adaptive ways to do prophylactic self-care” instead of just responding to issues as they arise.
However, the Government of Canada’s response to the pandemic, as well as much of our healthcare system, has been criticized for lacking any real preventative measures. In fact, in 2017 Ontario’s Provincial Emergency Management Office had already noted in a news release from the Office of the Auditor General of Ontario that the province was not prepared for an emergency. But there’s more chance for success if you’re prepared for the worst-case scenario.

“There’s a layer of setting yourselves up for success instead of failure or disappointment too,” explains Romu. “It’s like being prepared to make the most of the time you are using in that minute, and sort of prioritizing what’s your number one need … how are you going to meet that and how can you meet that safely or accessibly.”

This is a strategy that is rooted in Spoon Theory, a term coined by Christine Miserandino to explain the process by which disabled and chronically ill people have to plan and prepare to manage their energy and pain to meet their daily needs.
According to Aus, Romu, and Lovell, what that would look like on a governmental level would be ensuring that people had the type of income they needed to stay home and isolate, ensuring that all people were housed, and providing access to medication
for all.

A major focus of disability justice activists is to move the onus away from the individual and more onto the community as a whole.

There are several models that are used to understand disability. One model is the medical model, which understands disability as a problem within an individual that needs to be fixed or cured. A contrasting model, however, is the social model, which understands disability to be the way in which our physical and social environments are designed to exclude certain people.
While disability and the pandemic are more nuanced than either of those models can describe, there is something that Aus refers to as “the burden of preparedness” that is placed on disabled and other marginalized groups because of the individualist nature of our society.

And as Romu points out, that is reflected in our response to COVID-19. Instead of ensuring that people can stay home and prevent exposure, there is only emphasis on wearing masks and keeping distance. While that is necessary, we need to move beyond an individual response to a major crisis.

They continued on to explain that we can’t blame individuals when not everyone has the same access to resources to be able to isolate, access masks, and do their individual part.

“Financial inequality is a big factor in who’s going to get sick and die or not, who is going to stay home or not, who is going to be able to have a room to isolate in or not,” they say.

Instead, we should be building systems that allow us to work as a community to respond to emergencies and trauma. This is something called interdependence, or community care, which are major tenets in the work of disability justice activists such as writer, educator and trainer of transformative and disability justice Mia Mingus.

Mingus helped develop the idea of “pods” and “podmapping” years before the pandemic started. Pods were the relationships that one could turn to when in need of support. When lockdown protocols began affecting North America and social contact was suddenly limited, Mingus’ work on pods grew in popularity alongside the idea of “social bubbles” because she had already developed a foundation that could be built on further.

The beauty of apocalypse and dystopia is that it gives us the opportunity to disrupt, dismantle, and change the systems that are currently in place.

As Aus puts it, “We see everywhere in apocalypse fiction ways in which the world is gonna end, because that’s what people love to fixate on. But we very rarely see ways that the world starts.”

Instead of trying to return to our “old normal,” we should be taking this time to adjust our society to incorporate these concepts into how we function. We need to change how our schools, workplaces, and other institutions function.

One example is, as Aus describes, “unraveling the entire culture of nine to five work.” Or, to use another concept from disability justice, adopting “crip time,” a more flexible approach to timeframes—the idea being that we incorporate more rest time and more leeway into our schedules, instead of trying to adhere to rigid deadlines and workdays.

And instead of trying to reopen schools and force a “return to normal” before the appropriate measures are in place to control this pandemic, and other future public health crises, we should be changing how those institutions work. Remote learning
and remote work should be available even after lockdowns lift and a vaccine is distributed.

And as we manage with the repercussions of this pandemic, we should follow at least one principle of disability justice, and that is to follow leadership based on the most impacted. When disabled and other marginalized communities are foreseeing potential danger and offering alternatives, we need to pay attention and make use of this vital source of knowledge and wisdom. Once that happens, we can finally move out of this dystopian landscape and start building a utopia.

Photo courtesy of Disability Justice Network of Ontario

When it comes to disability, the majority of conversations centre around accessibility and inclusion. Ensuring workplaces are barrier-free, the ongoing fight for a living wage, and equal treatment are among the primary focus. And this makes sense—how can disabled people navigate a world that is structurally ableist?

That’s exactly what the Disability Justice Network of Ontario (DJNO) is working to dismantle. Highlighting systemic issues around disability narratives: gaps in education, bodily autonomy, intersectionality in all disability-related conversations, and understanding the abuses that Canadian policies have inflicted. And all of this is disabled youth-led.

When co-founder Sarah Jama, 26, was in university, she started questioning why conversations around disability were primarily inclusion-based. “I started to wonder, well, if we’re not burdens on the state but we’re being told that we are,
how do you … unpack that and undo that?”

In September 2018, with co-founders Shanthiya Baheerathan and Eminet Dagnachew, the DJNO was born. Upon receipt of the Youth Opportunities Fund grant, an Ontario Trillium Foundation fund that invests in community-based, youth-led initiatives, the DJNO focused on their main purpose: to politicize young people with disabilities more broadly and, Jama says, to teach youth that, “you can actually interrogate the systems that are causing you problems.” This is the same system that puts the onus on disabled people to demand space in all facets of society.

Shortly after their founding, the Youth Action Council branch was formed, made up of eight young disabled people from around Ontario who have spearheaded programs such as snow removal campaigns last winter, and care-mongering which provides groceries to disabled people. Starting with just a handful of volunteers, the DJNO now has over 200 volunteers of all ages and demographics, from regions across Ontario.

“Disabled people are taught that we’re burdens because of capitalism,” Jama says.

Currently, when inclusivity conversations are had, they focus around the “us” (disabled) versus “they” (abled), and that disabled worth is only measured on the ability to produce in a capitalist world, regardless of whether or not disabled people are included in these conversations.

Educating and demanding a place in the conversations around disability and ableism within institutional structures, governments, and other advocacy groups is a sphere DJNO works within. Weaving disability justice for Black, Indigenous, and LGBTQ2S+ marginalized groups against the carceral system needs to be a foundation of all disability conversations, politically and socially.

Earlier this year, Jama and her colleagues partnered with Ottawa Centre MPP Joel Harden to address the clawback of funding for assistive devices for disabled folks during the pandemic. This reduction in funding includes life-saving assistive devices such as wheelchairs, prosthetics, hearing aids, and the ability to safely monitor illnesses such as diabetes. Motion 86 to reform the Assistive Devices Program “to better meet the needs of people with disabilities, including mandating, funding and enforcing timely access to assistive devices,” was supported by the Ontario NDP caucus.

At the heart of the DJNO is restructuring a system that has restricted disability justice to accessibility, not inclusion, a way to move away from the onus of the disabled to prove disability and more towards underscoring the right for disabled folks to exist. That includes reworking the social model of inability and equitable worth to reconstruct a system where disabled folks have autonomy and a right to exist in different communities, without external dictation of identity.

“Disability justice is stuck in the ’90s in the sense that people are still coming around to understanding very basic concepts and separating [the] value of people with disabilities outside of consumerism,” Jama says. That includes all facets from perceptions of disabled as incapable to policing and “killing of people with disabilities,” Jama continues. It’s a novel perspective, and one that the DJNO is using to spearhead the deconstruction of disability justice from the inside out.

Illustration by Stephanie McKay

The fashion industry still has a lot of work to do when it comes to inclusivity. Often, when we discuss the lack of diversity—race, gender, body size, or disability—we think that the work of inclusivity has to start on the runways, in the boardrooms, or in editorial spreads. While it’s true that those changes need to be implemented too, if we want to truly break the societal norms in the fashion industry, we need to start in the classroom first where tomorrow’s designers can learn to design for all bodies.

In 2016, it was reported that the clothing manufacturing industry in Canada was worth $24.95 billion(U.S.), and although stats have not yet been released on what the industry has made to date, it has been forecasted to increase to $30 billion by 2020. Even with the steady increase in revenue in the industry and call-outs for more inclusivity to all facets of the business, fashion education programs throughout Canada have largely remained untouched.

From George Brown School of Fashion and Jewellery in Toronto to LaSalle College in Montreal, programming has largely remained unchanged, offering the same fundamental courses including pattern making and creation, construction, business management, and styling—to name a few. According to data compiled in 2015, 19.8 percent of those who graduate end up finding employment within the industry, which means that schools have the ability to shape students’ relationships with how fashion is produced and who it is made for.

In 2018, Ben Barry had just been appointed to become the incoming Chair and Associate Professor of Equity, Diversity, and Inclusion at the Ryerson School of Fashion, located in Toronto. In an interview with the Toronto Star he explained how, prior to being appointed, he told the Ryerson search committee that he hoped to revolutionize not only their fashion education program, but the industry and the world.

Fast forward to 2020, and Ryerson is in the midst of rolling out their new mandate that cultivates inclusion, equity, and decolonization in the field of Fashion Studies that helps students enrolled in their fashion programs. Barry hopes that by showcasing to students the marginalization and barriers some face in fashion, in the classrooms at Ryerson, they will be able to help shape and introduce new fashion norms by facilitating more learning experiences and discussion.

“I think that this approach is fundamentally why teaching students to design for diverse bodies and to think about diverse bodies in liberatory ways is the sort of way forward to really shift fashion education,” explains Barry, noting, “Education is really the birthplace of the thinking and the practices of the next generation, and it shapes the future of the industry.”

However, Barry’s approach to fashion education is quite unique in Canada. Many times, for changes to take place in the classroom, students will often have to advocate for themselves and call attention to the fundamental imbalance of representation within their program offerings, and the industry itself. In 2016, Nayyara Chue, a fashion design student at Parsons School of Design in New York City, petitioned to the school that she would be unable to finish her collection, as they didn’t have plus-size mannequins. When interviewed for Dazed magazine, designer and Parsons student Sinéad O’Dwyer mentioned that when she worked towards her BA in fashion design, beauty and thinness were ingrained within the
school’s culture.

Alysia Myette, contract lecturer at the Ryerson School of Fashion shares, “Students, especially now, have their finger on the pulse of social movements … and they’re just so much more vocal about the changes that they want to see happen … they’re using their voices in a really proactive way.”

Heather Clark, program coordinator with the Wilson School of Design at Kwantlen Polytechnic University in Richmond, B.C., recognizes, though, that like Chue at Parsons, many students are seeking more from their institutional educational program offerings.

“One of the challenges is that in a four-year undergraduate degree program, there is only so much that you can teach students,” she says. She explains that in the program they try to provide students with a good foundation of skills, so that once in the field they can start shifting and applying those skills as they see relevant.

But Clark realizes that some students who vocalize the need for more programming on body diversity and inclusive fashion are necessary. “As faculty, it’s up to us to go off and think ‘how do we help support these students?’” One of the first steps for faculty members to start teaching students about the different range and types of individuals, including plus-size bodies and disabled bodies, is to mentally reframe who should be included in the industry.

Myette believes that this ultimately becomes the biggest barrier for faculty members and a huge disadvantage for students. “A lot of the times when you bring in instructors from the industry, they’re bringing their own set of biases; they’re bringing their own understanding of what they know of the fashion industry and what works and what doesn’t, which then can influence what they teach in the classroom,” she explains.

For many students who are just getting starting on their careers, they don’t see themselves represented in the curriculum being offered. For many, the colleges and universities they are attending don’t feel like a safe or inclusive space to make the changes necessary, design the collections they want to see in the world, or even be themselves.

Hilary MacMillan, owner and designer of her namesake line, graduated from Blanche Macdonald in Vancouver in 2009, a creative arts college focused on hair, makeup, and fashion design. While she found the program useful, noting that her program included courses on construction, draping, and other skills, it was up to students to expand their studies outside of the school setting.

MacMillan became interested in designing for plus-size individuals, and introduced plus-sizes to her spring 2020 collection. Prior to its launch, she spent a considerable amount of time on research and development, since she had no formal training in school. She chatted with individuals who regularly purchased plus-size clothing, and also purchased garments to deconstruct, so she could examine how to construct patterns for differently shaped plus-size bodies all on her own. “I just tried to gain as much information as I could to figure out what was the best path for [our brand]. A lot of people think that it is just sizing things larger and that’s it. But there is a nuance to it,” MacMillan explains.

Similarly, Izzy Camilleri, the owner and designer behind IZ Adaptive, started designing ready-to-wear items professionally in 1984. During her time in school, Camilleri was taught the basics, which she explains gave her the tools to do whatever she wanted with her lines. It wasn’t until 2005, when Camilleri was approached by a wheelchair user to create custom pieces, that she became aware of the challenges of creating adaptive clothing. She says, “I didn’t realize what it actually took to get dressed and how limited her options were around clothing. So it was through that work I opened my eyes to a very big problem.”

Camilleri explains that making adaptive clothing is so much more than just designing, pattern making, and drafting; it’s also learning to understand the issues that people with physical disabilities face. This is why more than ever, it is important to challenge the status quo and have faculty open the door for marginalized groups to be represented and make inclusions outside of the industry norm in the fashion education system.

“I think that it’s almost that we also need to step back even further because part of this is about re-educating faculty and the majority of faculty,” explains Barry, noting that for many faculty members, they’ve grown up in a culture that praises specific types of bodies and is rampant with cultural appropriation. Barry believes that a refusal to represent or acknowledge certain groups can cause real harm to students, and the industry at large, by not training faculty to adapt. “There’s a process of learning—sort of educating them—and then there’s also practical consideration because when they went to fashion school, they didn’t learn how to design for a diversity of bodies or individuals. So there’s also training that’s required for them to learn these skills and practices to integrate that into their own courses and classrooms.”

While issues of diversity and inclusion are conversations that individuals like Ontario-based Métis artist Justine Woods and influencer Marielle Elizabeth in Edmonton, Alberta have been sparking online and offline, discussions like these often miss pointing out just how pivotal a role the fashion education system can be in changing things from the inside out. Jess Sternberg is the owner and CEO of Free Label Clothing and developed her line of ethical and size-inclusive clothing after working as a buyer and manager at a Toronto clothing boutique. Although Sternberg did not attend fashion school, she looks at many of the courses offered as a chicken-and-egg situation. “You know, we’re not being taught it and it’s not prevalent in the industry. So maybe I didn’t go to school, but what I needed to know wasn’t taught, like how to be size-inclusive or sustainable.”

Sternberg has a point: with a lack of accessible information available to students throughout Canada, at what point does the industry influence the education system? She further adds, “If we’re demanding that we want size inclusivity and we want more sustainable options for fabrics, fashion schools and the industry need to create more information and lessons on that because there’s a demand for it. We can blame the brands, we can blame the customer, we can blame the educational system, but somebody at some point has to make the choice to say ‘screw it and we’re going to go for it.’”

Right now, all throughout Canada, the training grounds for tomorrow’s crop of designers are bleak, but there is room for improvement. Clark admits that the sustainability conversation has been an amazing gateway for her faculty to open the door to conversations within the fashion industry, sharing they’ve had to explore how to make something that’s inclusive to all in terms of taste, what they need style and size-wise, and purposed for what they need the clothing to do. “There’s so many different components—and I’m not just talking about environmentally sustainable, but sustainable to our lifestyles as individual people. Everybody needs clothing!” she says.

While the system won’t change overnight, plenty of schools are slowly starting to implement the basic groundwork of diversity and inclusion into their programming, with Ryerson University leading the way in Canada. Right now, it’s time for these conversations to both enter and hopefully evolve continuously in the classroom. Myette says, “You really don’t know where the fashion industry is going to take you and learning to work with different bodies, learning to work with different personas, learning different facets of the industry and how you can play a role in different facets of the industry just gives you so much more of a well-rounded experience to enter the fashion industry, as opposed to just having a very narrow idea of what you’re going to do and closing all those other doors that could have otherwise been open.”