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.

Illustration by Matthew Daley.

On August 20, 1995, I slipped into the passenger seat of my friend’s rusty old hatchback. It was nine o’clock at night. As we pulled onto the highway, heading from Ottawa toward Montreal, I wriggled to get comfortable on the vinyl seat, smooth against my bare legs. Fastening the seatbelt, I settled in.

By ten o’clock we had hit a moose.

The first thing I remember is someone calling my name. I opened my eyes to the chaos. Shouting, slamming car doors, flashing lights. I couldn’t feel anything; I couldn’t move. Next came the emergency room. My friend, uninjured, except for a few scratches, tried to reassure me.

“They think you might just be in shock,” he said. But after X-rays, an ambulance to Ottawa, and an MRI, a neurosurgeon said broken neck, the highest two vertebrae fractured, a quadriplegic spinal cord injury.

My injury was called “incomplete” because my spinal cord’s capacity to convey messages to and from my brain was somewhat intact. I might regain enough movement in one arm to transfer to a wheelchair, I was told. I might be able to live independently. I learned in an instant how one can shift from ability to disability in so unannounced and sudden a way.

At first I could only move my eyes. Machines, attached by tubes snaking across me, had taken control of all my bodily functions. Nurses assumed my body’s care: rolling it, washing it, feeding it, wrapping it in a hospital gown, catheterizing its bladder every four hours. These actions were beyond intimate for a 31-year-old.

What came next were five months in a rehabilitation centre and the gradual return of my left hand. Shaky at first, I inched through hospital corridors maneuvering the joystick of a power wheelchair. Food splattered around me like an infant feeding itself, though eventually I mastered showering, dressing, and brushing my hair and teeth. My left hand became a cornerstone of my independence, and walking was increasingly seen as optional, merely a way to move from place to place. The wheelchair would suffice.

Public scrutiny of my body was initially surprising. In line for coffee, walking along the street, travelling by taxi: Did you have a stroke? An accident? What happened?

Yet my legs recovered. From initial twitches to more coordinated movements, I slowly graduated to propelling a manual wheelchair with my feet, stepping between parallel bars and walking with a cane. Life returned after a year. I walked slowly with a limp and retained little function in my right arm. I learned to write again with my left hand.

At that time, I viewed my recovery as a reclamation of self, though I had no understanding of what my life would become. Disabled, I had crossed some invisible line and become “other.”

Public scrutiny of my body was initially surprising. In line for coffee, walking along the street, travelling by taxi: Did you have a stroke? An accident? What happened? Marked physically by trauma, I felt on display, having lost some right to privacy. People seemed curious, often offering advice or encouragement as one would to a small child. Good for you to be out on your own!

Other intrusions were less benign. “What’s the matter with you anyway?” a cab driver once asked me after I got into his taxi. “I was in an accident,” I replied. “You can’t use your arm? And you don’t walk very well. Christ,” he said. “If I was you, I’d kill myself.”

While that cabbie likely just suffered from individual prejudices, his sentiment toward me was hardly unique. Depictions of persons with disabilities in the media reinforce stereotypes that promote such objectification and discrimination. Rarely is a person with a disability presented as a multidimensional, complex character, driven by human desire, who just happens to possess physical challenges. Instead, they are lauded as inspirational heroes, victims, or objects of pity. A reality show that followed people with disabilities on dates chose the moniker The Undateables.

***

Evenings out are often fraught with complications. Venue information on accessibility is inconsistently provided, and when it is, rarely do the words “barrier-free” appear. Listed under “accessibility” is often the number of stairs at the entrance and the flights required to access washrooms. And since stairs render an establishment inaccessible, this information tells people with mobility disabilities that they’re not welcome.

I sometimes attend events in inaccessible locations. Once I was helped up the stairs to a friend’s birthday party, only to slide down again on my bum in full view of other guests, patrons, and staff at the end of the night. Could my friend have picked a more accessible space? Possibly, but in Toronto they’re in short supply.

I travel often and am highly dependent on accessibility services. There’s little sensitivity to be found receiving wheelchair assistance at Canadian airports. Able-bodied friends I travel with are typically addressed in my place, with airline staff referring to me, if ever, in the third person.

Alone, I have been “parked” in the middle of terminals with little explanation. Agents complain to me about the number of “chairs” they have to assist, their sore backs, or staffing shortages. They converse with each other, griping about working conditions and personal matters as if I were a burdensome object to be shunted around.

Two decades of being disabled have affirmed for me that the social stigma and discrimination people with disabilities face extends to the ever-present struggle for access to services and built environments.

Universal design, emphasizing the creation of environments that can be understood and used by as many people as possible, regardless of ability, would help anyone with mobility limitations experience their cities more fully. Plus the mere presence of people with disabilities in public spaces could lessen the prejudices all too present in our society.

It might also preclude the need to categorize oneself as disabled, or even the need to prove “disability” to gain access to services and built environments. Ability exists along a continuum, comprised of visible and invisible conditions. We should all remember that.

I once attended a conference where a speaker reminded the audience that “able-bodiedness is a temporary state.” Whether from birth, illness, injury, or aging, many of us will need accessible services and environments.

Frankly, we deserve better than sliding our bums down stairs.

I used to dream about owning a house someday. Nothing extravagant, just a roof over my head that belongs only to me—a millennial’s dream of a room of my own.

In 2012, that dream was on the horizon. I had finished my education and was living at home with my mother. She owns a modest bungalow in a well-to-do Toronto neighbourhood with a 30-year mortgage and a crumbling foundation, but it belongs entirely to her. My first contract in publishing had just ended, and I was excited about my future prospects. But job offers from future employers never arrived.

In an unfortunate twist of fate, I instead received a phone call from my mother. After years of curious symptoms, her boss had finally sat her down and insisted she see a doctor. She received an MRI, and upon review of the findings, a neurologist immediately sent her to the hospital. My mother was diagnosed with a meningioma, a benign but invasive brain tumour that grows on the membranes around the brain and spinal cord. I stopped applying for jobs and spent the next year at home acting as my mother’s Power of Attorney and caregiver, helping her recover from the craniotomy that removed the fist-sized tumour from her frontal lobe.

My mother was lucky: She worked for the same union for over 30 years and had an incredible employee benefits plan and union representatives who protected her employee rights. She also banked many years of unused sick days and vacation days, giving her almost a full year of paid time off at 100 percent of her salary. As a young adult overwhelmed by my new legal and financial responsibilities, I didn’t recognize what a blessing that this was.

She eventually recovered and was able to return to work with some accommodations. Soon after, I was offered a permanent position with my previous employer, and the office was not too far from home. They offered me a modest but comfortable salary and full benefits; it seemed as though our luck finally turned around. I paid my mother a small amount of rent and put a large portion of my salary into a savings account, dreaming that it might one day be enough for a down payment on a house of my own.

***

In 2014, I began experiencing health issues of my own. I had back pain, which I dismissed as sciatica. So did the ER doctors at Toronto’s Sunnybrook Hospital, who refused to do further testing. But by early 2015, the pain was so bad that I couldn’t sit or stand at my desk. I laid on the floor with my laptop in front of me, periodically resting my head on the filthy office carpeting. Concerned colleagues would ask me if I needed help, but there was nothing they could do. Eventually, I put up a sign on my cubicle that said “I have not fallen and I am not dead.” I was so accustomed to pushing through my pain that I didn’t consider sick leave until instructed to by my physiotherapist. When she validated my pain and told me that it was bad enough, I collapsed in her arms and cried.

MRIs later revealed a large disc rupture in my lumbar spine, which was compromising the spinal canal and beginning to cause progressive paralysis in my lower body. I saw a pain specialist, who tried several rounds of cortisone injections but warned me it was only a short-term solution. I had my first spinal surgery in August 2015. I recovered well, and I naively believed that it would be the end of my health troubles.

In 2016, I accepted a new job in trade publishing and moved into my first apartment with my partner. But only a year later, my disc ruptured again while I was on a business trip in Europe. I gulped down muscle relaxants with generous glasses of Prosecco until I got home.

Six months later, I received a second surgery. I lost most of 2017 to pain and brain-melting medications. Over this last year of disability, the nest egg in my savings account dwindled away, replaced by a hefty credit-card bill and shamefully crowdfunded rent donations. I don’t dream about buying my own house anymore.

Ultimately, the burden of research into alternative programs and funding is placed on the individual already dealing with debilitating illness

Canadians often feel smug about our universal health care. We shake our heads at the American system and rehearse the legend of the great Tommy Douglas, “Father of Medicare.” But in this smugness, we forget how terribly recent it all is. Douglas introduced Medicare to Saskatchewan in 1962, preceding the federal government’s first Medical Care Act in 1966. It would take another six years for universal health care to reach all provinces. It wasn’t until 1984 that the federal government established national principles to ensure each province and territory met the requirements of free and universal access to publicly insured health care.

We give our government a break regarding its flaws, because we feel secure in our belief that we are taken care of if something bad happens. But there’s a sinkhole at the intersection of health care and social welfare: Even if you have full-time, stable work, employee health benefits, and a healthy savings account, a long-term illness or injury can take all of that away. And if you are not so privileged, you may fall through the cracks.

***

The first time my health failed, I was fortunate to access private benefits for short-term and longterm disability through my employer. These benefits came with a salary loss of about 30 to 40 percent, but it was still the best possible outcome for someone in my situation. My mother and I swapped roles again, and she became my primary caregiver. I had the privilege of living at home with a strong support system. But, absorbed by my pain, I hadn’t realized things could have been much harder.

This was a lesson I learned the second time I became ill, when my employee benefits did not include short-term disability. I turned to government assistance and discovered just how difficult and demoralizing it is. The Canadian government offers sickness benefits through employment insurance (EI) for those without a private insurance plan. But in order to qualify, you must be eligible for EI. Consequently, EI sickness benefits may exclude those whose health has precluded them from working and those whose work is unstable or insecure.

The benefits are a privilege that many vulnerable citizens cannot access. For those eligible for EI, sickness benefits pay out at a maximum of 55 percent of their regular salary—an unliveable amount for most people—and are only available for a maximum of 15 weeks. If you lose your job, EI employment benefits will pay out for up to 45 weeks, but if you get sick, you’d better hope to recover within a third of that time.

The Unemployment Insurance Act was introduced in 1971. Despite numerous revisions to other forms of benefits, the 15 weeks of coverage for sickness benefits has not changed since its legislation. Employment and Social Development Canada (ESDC) did not respond directly to questions about this discrepancy among different kinds of benefits, but stated that “an evaluation of the EI sickness benefit is underway and is expected to be completed in 2019.” They also emphasized that the EI sickness benefit is a short-term relief for claimants who intend to go back to work.

Herein lies the problem: What happens if you don’t recover in 15 weeks? I asked ESDC for suggestions regarding next steps in such a case, noting that the burden of this research seems to fall on the claimant—there’s no information on the EI website about sickness benefits running out and little human interaction throughout the process. ESDC responded that EI “complements a range of other supports that are available for longer-term illness and disability in Canada, including benefits offered through employer-sponsored group insurance plans, private coverage plans held by individuals, and long-term disability benefits available under the Canada Pension Plan Disability (CPPD) and provincial and territorial programs.”

Apart from CPPD, income-support programs for longterm disability are largely a provincial domain. Individuals whose illness is expected to be long-term are to use these programs, highlighting yet another problem: What if you’re not sick enough? “Long-term” is often defined as a minimum of one year, in even the most generous provinces. The Ontario Disability Support Program (ODSP) requires that your illness be expected to last at least one year; B.C.’s Disability Assistance plan requires that you expect it to last at least two; and Alberta’s Assured Income for the Severely Handicapped program requires that your impairment is expected to be permanent. If you’re sick for longer than 15 weeks but less than one year, like me, you are caught in limbo. I have never been disabled for a consecutive year, but cumulatively I have been disabled for almost two of the past four years. My 15 weeks of EI sickness benefits ran out quickly, but I wouldn’t have met ODSP’s requirements for long-term disability because my doctors couldn’t anticipate the duration of my condition.

My EI sickness benefits ran out one month before my surgery was scheduled in 2017. Fortunately, my employee benefits included long-term disability. It took almost three months to get the paperwork together and for the government to review my application, which was later denied on the basis that my illness was a pre-existing condition. I was told that I did not have the right to appeal this decision, but I did anyway—and I won. During those three months of arbitration, I had zero income and mounting medical bills. I maxed out my drug plan and physio benefits, emptied my savings account, and begged for rent donations from my loved ones. In a culture that values people for their productivity, I felt like a failure.

According to Ontario’s Ministry of Community and Social Services (MCSS), the governing body of ODSP, individuals who do not qualify for ODSP or who are in the process of applying for it, may be eligible for other social assistance programs, such as Ontario Works. The program covers basic needs—food, clothing, shelter—and may also include drug and medical transportation costs. Likewise, the Government of British Columbia says individuals who are not eligible for their Disability Assistance plan may still be eligible for B.C. Income Assistance. While it’s heartening to know that our government’s social welfare programs provide assistance for those in financial need, there is still a communication failure between our health care and social welfare systems. Ultimately, the burden of research into alternative programs is placed on the individual already dealing with debilitating illness.

***

Toronto’s Alexandra, 26, currently receives ODSP support. At age 18, she was diagnosed with major depressive disorder and social anxiety. She currently receives about $1,150 per month from the provincial program— about 55 to 67 percent of her earnings from when she was able to work. Out of financial desperation, she is trying to earn some additional income from dog-walking, but fears the consequences of reporting this income to ODSP. “All of this extra stress makes my depression worse, which is a vicious cycle because then I can’t work as much as I need to,” she says.

Like Alexandra, many who qualify for disability income assistance find that the funding falls short. The average monthly CPPD benefit is $933.82, based on a monthly fixed amount of $471.43, plus additional funding based on previous CPP fund contributions. ODSP’s monthly allowance is comprised of a “basic needs” amount—$649 for a single adult— and a shelter allowance—a maximum of $479 per month to a single person. In total, we can assume that a single adult with no dependents will receive an average maximum of $1,128 per month from the program. The average cost of a one-bedroom rental apartment in Toronto has hit $2,020 per month, making such an income barely enough to cover housing costs, let alone food, transportation, medications, and therapies. And while it might be tempting to think that people should move to less expensive areas, most urban centres offer far more medical and disability services than smaller communities or rural areas.

As affordable and supportive housing disappears, those sick and with disabilities are left on a slippery slope toward homelessness. To supplement disability benefits, many will have to work to earn more income—a logical fallacy when you consider the lengths they have already gone to prove they cannot work. Setting aside the physical and intellectual challenges of working while dealing with illness or disability, ODSP creates another challenge: You can only earn $200 to spend as you need. After $200, ODSP will reduce your income support by 50 cents for every dollar you earn. So if, for example, you earn a monthly income of $300, your ODSP support will be reduced by $50, and so on. ODSP’s definition of “income” isn’t limited to earnings from work but as any money that you receive. This means ODSP support can be affected by the receipt of other government benefits, child or spousal support. ODSP does offer a $100 per month work-related benefit to help offset the costs of transportation and clothing for work, but any income is still subject to the 50-cent rule. The benefit purports to incentivize recipients to find work and remain employed, but in practice the income rules create more of an obstacle.

***

Income support is not the only financial burden people with disabilities experience. Disability and poverty often go hand-in-hand, making health care a lower priority than basic needs like shelter. This is especially true in a system that does not cover the costs of prescription medications. In fact, Canada has the only universal public health care system that does not include universal prescription drug coverage outside of hospital settings.

Erella Ganon is a Toronto artist with disabilities who currently receives ODSP income support.“I wear two sets of handcuffs,” reads one of her illustrations. “Living with a disability is one. Trying to exist and…hav[ing] a fulfilling life while negotiating the rules for living on a disability pension is another.” One of these rules relates to her medications. While ODSP offers prescription-drug coverage, it only includes medications that appear on the Ontario Drug Benefit Formulary. Ganon requires Solu-Cortef, a brand-name injectable cortisone drug used to treat Addison’s disease, a life-threatening illness, but ODSP won’t pay for it. In March 2017, Ganon says she was taken to an emergency room in Toronto, and the hospital did not have the live-saving medication in stock. Instead, her daughter taxied home to retrieve Ganon’s own stock of the Solu-Cortef, for which she paid out of pocket. Two specialists and her general practitioner have all submitted paperwork to ODSP requesting coverage for Solu-Cortef—and each time she was denied.

When our health care and welfare systems fail to work together, it is those with disabilities who are most seriously disadvantaged

Vanessa, 41, reports similar challenges with the costs of her medications. She received health care coverage from her last employer until it was abruptly cut off in 2010. Vanessa is on a minimum of five antipsychotics, antidepressants, anti-anxiety, and sleeping pills at a time, and she couldn’t qualify for most individual plans because mental illness is considered a preexisting condition. “I finally found a [private] plan that gave me some coverage, and have been paying $200 for health care out of pocket, out of my monthly $1,000 from CPPD,” she says. This leaves Vanessa with $800 per month for living expenses.

Options for prescription-drug coverage vary from province to province. Quebec has a public program that provides insurance for individuals who are ineligible for private drug insurance and for those enrolled in Emploi-Québec’s Social Solidarity Program (the Quebec equivalent of ODSP). But there are obstacles to enrolling in this program: The forms must be filled out by a family doctor, of which Quebec has a major shortage. It is possible to have the paperwork submitted by a GP in a walk-in clinic, but many will not agree to do so—or if they do, they may charge fees of up to $80 per page.

***

In early 2018, I recovered from my second surgery and I gradually returned to full-time work. I can now walk without assistive devices, I have weaned off opioids, and I appear able-bodied. I know that I am lucky to have a job to return to, but I’m acutely aware of the lost time. In some ways I feel like a time traveller stuck in the past; my version of 2017 ended in April, and I’m struggling to find my place in this new year.

Fiscal conservatives may argue that we should be grateful for the health care systems we have in place, that we should pick ourselves up by our bootstraps and stop relying on social welfare at taxpayers’ expense. But if our system is one that only patches people up at the expense of their financial ruin, how dare we act smug while we deny basic standards of living and care to those who are most vulnerable? When our health care and welfare systems fail to work together, it is those with disabilities who are most seriously disadvantaged. And in this inescapable cycle of disability and poverty, we are robbed of the contributions of citizens who are just as worthy, valuable, and loved as the able-bodied.

CORRECTION (04/24/2018): A previous version of this story misstated Erella Ganon’s medical condition, as well as the circumstances around her March 2017 hospital visit. The piece has now been updated. This regrets the errors.

The march began in 2011 in response to municipal shortcomings in Toronto. “Back in those days Rob Ford was [the mayor] and trying to make cuts to things like social housing and Wheel-Trans and TTC [the transit commission] and a lot of those changes were really impacting the disability community,” says founder and co-organizer Melissa Graham. “We weren’t seeing ourselves reflected in all of the movements and activist activities that were going on.”

In subsequent years, the march has still aimed to raise awareness of many of the same issues: housing, transit, and low- and unpaid labour. The conversation has also expanded in recognition of how race, gender, and class intersect with disability. According to Graham, this year’s speakers reflect “a better understanding of who gets to speak, and why.”

Although the Toronto Disability Pride March has a small core group of organizers, the strength of their approach is in building relationships with other activists to extend the spirit of the march all year long. In addition to supporting increases to the minimum wage, the Toronto Disability Pride March collaborated with the Alliance for Equality of Blind Canadians to promote the Sidewalks for All campaign. The goal is to make cities more accessible by ensuring a minimum 2.1-metre pedestrian clearway on sidewalks.

Disability awareness consultant Andrew Gurza attended in 2012 and remembers the event as cold and sombre. As a queer disabled man, Gurza says, “when I think of pride I think of a celebration, something festive.”

Since that time, the event has moved from October to September in hopes of better weather but the focus is still on highlighting issues that disproportionately affect people with disabilities. Graham stresses that it’s a march, not a parade. However, Gurza sees a need for celebration: “We can embrace our disabled identities and enjoy it…sometimes I think we just need to have a party for ourselves.”

Positivity was back on the agenda for this year’s march, which culminated in a celebration of Beverly Smith, a Toronto Disability Pride March co-organizer and anti-poverty activist who passed away in November 2016. To honour her work, the march concluded with performances by comic Courtney Gilmour and hip hop artist Mohammed Ali. The inaugural Beverly Smith Community Engagement Award was given to longtime disability pride supporter and emerging artist Romeo Dontae Pierre Biggz.

Reflecting on the late Smith’s legacy, Graham noted, “one of the things that she was really good at was recognizing people who are making an effort in the community but who aren’t getting noticed.” As an event run both for and by people with disabilities, the Toronto Disability Pride March recognizes not just individual artists and organizers but a community of identities too often defined by shame and stereotypes originating outside of disabled experiences.   

Saturday’s march made disability visible in Toronto, but disability pride is a growing and global movement. Richmond, British Columbia, hosted the province’s first disability pride event in June while thousands attend New York City’s annual Disability Pride Parade, which started in 2015.

For Graham, one of the best things about the march is that it gives people with disabilities an opportunity to be seen and heard: “Disability activism that took to the streets used to be something that people did just to get the curbs cut and access to schools…so in a way it’s bringing back an older method of organizing and revamping it for 2017.”

Gurza, a disability awareness consultant since 2012, has made it his mission to get Canadians to stop, think about, and discuss how people with disabilities are portrayed in society—including their sexuality and desires. Since the launch of his website, AndrewGurza.com, in January 2015, his message is slowly making its way to folks both in Canada and across the world.

People with disabilities face a number of challenges. One hurdle Gurza has faced is that society largely views disabled folks as undesirable or asexual beings. “Sex and disability make most people uncomfortable because they haven’t had the chance to see disabled people sexualized in a way that gives them agency over their bodies and their experiences,” he says. As a result, Gurza has spent considerable time over the past four years crafting his voice. He has worked tirelessly to reclaim words such as “disabled” and “crippled.” Through social media and his blog, he provides readers with insight on the real disabled experience. “It is never really seen as something normative and accepted at all,” he says.

In February 2015, Gurza launched Disability After Dark, a weekly podcast dedicated to disability and sex. He talks frankly about everything from sex and sexuality, desire, devotion, accessibility, sexual identity, and queer culture, and often invites guests on the show to share their experiences. In a recent episode, “Accessing Anal,” Gurza discusses the inaccessibility of anal sex to a person with disabilities, using himself as the example. Its open and honest format has paid off: The podcast has reached nearly 6,000 downloads since its inception.

Gurza also speaks across North America about disability, on topics ranging from body image issues to long-term care. “Being a disability awareness consultant, I want people aware of what the disabled experience—what my experience—as a queer disabled man feels like,” he says. “I want to bring everyone into my experiences and give them a seat at my table.”

It’s hard to deny that while Gurza’s voice is valuable for the disability community in general, it is extraordinarily valuable and necessary in the queer community. As a queer man, he’s aware of the “homonormative ideal,” which assumes that all queer people must conform to certain ideal beauty standards or fit certain stereotypes. From being flamboyant and feminine to having huge muscles and a beard, these ideals have plagued Gurza throughout his life, and he has been confronted with an incredible amount of ableism and discrimination from within the community. “I’d be lying if I said it didn’t hurt,” he says. “It burns each and every time.” From being asked blatant questions about his body (“Does your penis work?”), to being unable to access queer spaces both physically and emotionally, much of this has fueled Gurza’s work. “I use the tough parts [of my own life] to bolster my mission of shining a light on the reality of disability,” Gurza says.

Gurza has embraced his status as a kinky cripple who has worked overtime to dispel the myths that plague those who have disabilities. “What I am trying to do in my work is shine a light on what disability is really like for me,” he explains. “There are days when living as a disabled person isn’t awesome, and no matter how much positivity you use, nothing will change that.” He believes that by showing Canadians the emotional side of disability, they will have a better understanding of how disability affects folks in all aspects of their lives. Most recently, a parent who listened to Gurza’s podcast wrote in to say that because of him, they now had the words to talk to their disabled teenager about sex. “When I read that, I was bowled over. I mean, it doesn’t get much better than that,” he says.

This year, Gurza is challenging himself to something different: he’s in the midst of writing a book proposal based on his blogs and planning a lecture series based on his podcast series. “I want my voice to be among the many disabled people, to bring disability that much closer to the mainstream,” he says. Gurza may just be the voice to end the stigma and make you look at disability differently

For our special 50th anniversary issue, Canada’s brightest, boldest, and most rebellious thinkers, doers, and creators share their best big ideas. Through ideas macro and micro, radical and everyday, we present 50 essays, think pieces, and calls to action. Picture: plans for sustainable food systems, radical legislation, revolutionary health care, a greener planet, Indigenous self-government, vibrant cities, safe spaces, peaceful collaboration, and more—we encouraged our writers to dream big, to hope, and to courageously share their ideas and wish lists for our collective better future. Here’s to another 50 years!

I’ve read a lot of hospital memoirs lately: anecdotes featuring shit and piss—stories that detail the bloody mess of having a body. I can see myself in them. It’s soothing to witness your own physical pain and trauma (and moments of hilarious bodily fluid explosions) mirrored back. As a disabled woman, I ache for community that normalizes my “abnormal” body.

At the same time, I often cringe. It’s a complicated cringe. I’m not grossed out. It’s more a cringe of fear. When I read about other sick and disabled people who stipulate that their bodies be respected and their truths be heard, I feel admiration, respect, and a certain kind of panic. It’s a (perhaps irrational)worry that good health care provision is a finite resource that will be taxed by too many of us asking, asking, asking.

Over the years my strained relationship with the Canadian health care complex has achieved a fine balance: I don’t ask for a lot but I firmly demand what I need. My strategy for self-advocacy when navigating the doctor’s office: wear a nice blouse. Speak calmly and know how to describe your pain. Don’t complain when they touch your body without asking first. My strategy is significantly bolstered by my white skin. My tactics are assisted by my expensive clothes. It matters that I am a cisgender woman. All the ways that I pass make it easier.

In Canada we are lucky to have access to health care and I am grateful. But still I long for more—for better. I dream of a future where our Canadian health care system is radically restructured. I want for health care to be truly accessible. I imagine a world where patients are recognized and trusted as holding expert knowledge concerning their own bodies.

In this dream world hospitals would be better funded. In this dream world health care practitioners would work less and have more space and time for each patient. Medical school would not only teach students how to care for the sick but also learn empathy. The medical understanding of the human experience would be intersectional. Imagine a world where your health care practitioner could acknowledge the physical implications of living in a white supremacist patriarchy, as well as understand the functionality of your liver. Imagine a tiered system where hospitals involved social service workers, counsellors, and peer support workers as well as nurses and doctors.

Imagine a world where disability or physical difference was not a problem to be solved, rectified, and rendered normal, but where we instead honoured our individual resilience. I want for a doctor’s office that can offer me relief, but still see me as strong. I want to take a page from all of those memoirs and confidently ask, ask, and ask. I want for my body to leak, sway, and take up space, and to demand no less for all of that.

For our special 50th anniversary issue, Canada’s brightest, boldest, and most rebellious thinkers, doers, and creators share their best big ideas. Through ideas macro and micro, radical and everyday, we present 50 essays, think pieces, and calls to action. Picture: plans for sustainable food systems, radical legislation, revolutionary health care, a greener planet, Indigenous self-government, vibrant cities, safe spaces, peaceful collaboration, and more—we encouraged our writers to dream big, to hope, and to courageously share their ideas and wish lists for our collective better future. Here’s to another 50 years!

As a Canadian with disabilities, I spent many years looking for the so-called perfect job. From student jobs to call centres, I was doing my best to be employed in a normal job “just like everyone else.” As I did my best to clamber and climb up the corporate ladder trying to make my mark and stand out from my peers, I also had a little voice in my head urging me to do something different—something that spoke to who I was and my experiences as a queer man with disabilities.

Eventually, I decided to quit the rat race and work for myself. I branded myself as a disability awareness consultant and with 10 years of academia and my lived experience as my guide I made it my mission to make disability accessible to everyone. My goal has always been to tell the truth about the disabled experience, and to invite people into that reality. As I began to branch out and take hold of more opportunities born out of my willingness to be accessible Deliciously Disabled took shape. I remember that Now interviewed me and asked me how I wanted to be described in the piece. I smiled coyly and said, “Call me deliciously disabled.”

Under Deliciously Disabled, I built a brand that aimed to shift our cultural understanding of disability in Canada and abroad. Deliciously Disabled worked to invite everyone to have honest, frank, and real discussions about how it feels to live with a disability everyday. I believe that we aren’t talking about disability the right way. Many of us are too afraid to talk about how disability scares us, how sometimes we don’t know what to say, how we don’t want to be disabled or become disabled. In our collective fear we have neglected the fact that disability can also be an enriching experience full of humour, truth, and fun. In my work, I strive to strike a balance between those two worlds.

Now, as I shift away from Deliciously Disabled, I’m taking that conversation even further with my new work under Disability with Drew. I intend to go deeper into the lived experience of disability, so that the next generation of disabled Canadians can see themselves represented—so that they can feel like they have a voice and an identity that actually encompasses their reality without feeling fear or shame. And it is my hope for the future that by making the experiences of disability accessible to everyone, they will see just how truly delectable disability can be.

Photo courtesy of Andrew Gurza/Twitter

Illustration by Danielle Krysa

Independence has never come easy for me—but it’s always been vital. I was born premature in 1989 with undiagnosed dyspraxia, a neurological disorder that permanently affects memory, coordination, and processing speed. Because my development was delayed and I was held back in kindergarten, I heavily relied on my classmates throughout school. I nodded my head to fake that I understood, but wondered why I felt slower than everyone else. My conservative, Catholic parents called me demanding and needy, encouraging me to settle for whatever nice guy I could find to support me one day—but I was adamant that I would take care of myself when I got older.

I was finally diagnosed with dyspraxia in my early twenties. I’d sought a psychological evaluation because I didn’t understand why I couldn’t keep a job. I was tired of failing to make it on my own and going back to live with my parents. Their look-the-other-way approach, frustrated name-calling, and refusal to acknowledge my struggles only made me feel worse. I used alcohol and sex to cope with the abuse. I felt like an outcast—it seemed like my own family didn’t even love me. My older brother committed suicide when I was 11, and I often felt like he was the only one who would have understood what I was going through. Like him, I was an artist who dropped out of school and was struggling to find my place in life.

Before all this, I’d dreamed of being a writer, graduating with a degree in communications, and getting a job at a well-paying magazine. I knew I was talented, and my teachers agreed, but my highly-graded essays couldn’t make up for the fact that I had trouble retaining information. Tests were difficult and held me back, forcing me to drop out of university. But I was determined to not give up. Even as I was failing classes I had already repeated, I decided to become a freelance writer and start my own magazine. I hoped it would allow me to work in my chosen field, use my talent, and become a better route toward achieving financial independence. After all, if I couldn’t hold a job, what good was a degree and thousands more dollars in debt? So, in 2010, I started FLURT, a socially-conscious magazine for young people who wanted to create a better future. I honestly believed that if I worked hard enough I would get it off the ground and would be able to support myself.

But as most entrepreneurs know, success doesn’t happen overnight. I didn’t have any form of stability to fall back on and the stress of living in poverty pushed my health to its breaking point. I moved constantly as I tried and failed to hold the most basic of jobs. As I strived to balance it all, my freelance writing and my magazine were both pushed to the side. In 2010, at age 21, I successfully applied for income support—a shallow safety net for those who are struggling to support themselves—to help me get on my feet. After a few years, I applied for Alberta provincial disability benefits. It’s a more sustainable program for those who are with living with a permanent disability, but also it’s incredibly difficult to get accepted.

The first time I applied for disability benefits, I was rejected. Unfortunately, it was a year before I received my dyspraxia diagnosis and without it I didn’t know—and couldn’t explain—why I couldn’t keep a job. For the following year, I continued to scrape by on income support, feeling hopeless. I felt trapped in the welfare system, scrolling through online “gigs” as a potential long-term way to get out of the hole.

Finally, in 2014, I made it off the waiting list for a $200 psychological evaluation. After two days of cognitive tests, a doctor said that I met the criteria for dyspraxia. It immediately made sense to me. I recognized many symptoms as part of my everyday life: poor visual perception, difficulty remembering things, bad motor skills, and trouble with speech. This lengthy report became the key ingredient to the collection of letters from doctors, social workers and previous employers—as well as the entire contents of my years in therapy—that I would need to get accepted into the disability benefits program. In 2015, at 26, I finally felt I had the support I needed to achieve independence.

After six years of renting rooms in houses where I felt like I had to walk on eggshells, I was able to rent my own apartment long-term. The amount of anxiety I’d felt these past years began to slowly lift, and I started believing that I would be able to feel happy and safe in the years to come. Instead of constantly being worried about how I was going to support myself, where I was going to live, and what I was going to eat, I could focus instead on my getting my freelance career and magazine on track in a peaceful environment that felt like home.

It was this entrepreneurial spirit that brought my partner and me together last year when he struck up a conversation about my magazine. We were instantly attracted to the other’s drive to be independent and fulfil their career goals—me in the magazine industry and him in tech. We agreed early on that we didn’t want to get married or have children, and that work would take the full centre of our lives. Because of this we talked about long-distance possibilities if he had to move for work, and agreed I’d stay here since starting the process of applying for social assistance somewhere else would be both exhausting and difficult. If we wanted to be together, we decided, we would make it work.

But I struggled internally with the difference in our bank accounts. Even though he made five times more than I received from social assistance, I still wanted to pay for myself on dates and occasionally take him out as well. Even though he would cook for me when I ran out of food and let me borrow money until my next pay cheque (which just put me behind the next month), I always found myself in the same position: broke and feeling like our relationship wasn’t on even ground. He’s the most supportive man I’ve ever met, but he didn’t sign up for this and I didn’t want him to.

I was also shocked to learn that if we were to move in together and become common law, I would lose my financial independence. Since my partner earns more than $3,812 a month—the household income limit for a person on disability benefits—I would be forced to give up my social assistance. It doesn’t matter than I earn nowhere near that amount, benefits or not. His income, in the government’s eyes, would count towards my own. Like many people who’ve applied for disability benefits in Canada, trying to find out information like this was difficult and confusing. When I was finally able to meet with my caseworker and sign the papers a few months after getting accepted, I asked for her to explain the cut-off system to me. She responded with a joke about how if I ever met a rich man—well, she didn’t need to finish her sentence.

I was angry. After six years of commuting to meet with countless doctors, therapists, psychologists, and social workers, filling out piles of paperwork, the stress of an appeal, and the damaging effect it had on my mental health, I was now faced with the unfair, impossible choice of financial independence or living with the person I loved. I felt like I’d rewound to the 1950s. I imagined myself at a top-level university that promised a stable, prestigious career, only to have a university professor tell me that once I graduated I needed to decide between a husband and the field I worked in.

Today, all but the most conservative would call that ultimatum outrageous. We understand, as a society, that women have careers not just because they need the money but because having financial independence gives them a sense of purpose and control in their lives. Why did the government assume that, just because I had a disability that affected my ability to work, I’d jump at the chance for a man to take care of me? As much as I tried, I couldn’t shake the question: Can you truly be a modern woman with a disability?

What the government is telling people who are on disability benefits, especially women, is that instead of seeking independence, the better choice would be to find a rich man—or, really, just any man. The Institute of Women’s Policy Research has, after all, declared that women in North America potentially won’t have an equal wage for another 50 years or so—a man doesn’t have to be rich to out-earn us. And, if women without disabilities have a hard enough time making it in a man’s world, I wondered, where does that leave those on disability benefits? I knew there must be more women out there, like me, who imagined a life with someone—only to face a threat to the financial independence they’d worked so hard to achieve. Because having your benefits yanked from under you and then having to rely solely on your partner for your basic needs doesn’t just curb your independence—it destroys it.

As I contemplated the consequences of my relationship, I couldn’t help but think of those women who had forgone their benefits. What happened if they wanted to leave their relationship?

Lola is a 20-something woman living in Alberta with Hashimoto’s Disease, an autoimmune disease that attacks a person’s thyroid. Like all of the women I interviewed, she asked that I give her a pseudonym because of the stigma associated with living with a disability. I can relate. Since I’ve been on social assistance family and friends alike have felt the need to tell me how I’m just not trying hard enough. Because Lola is in a common-law relationship with her partner, she hasn’t applied for disability benefits because he makes too much money for her to qualify. But that doesn’t mean she’s financially stable.

Instead, she works as a server despite “feeling like death” and “starting her day with an arsenal of medications.” Lola has expressed concern about how her partner treats her and her pets—mishandling both when he gets
upset. She’s wanted to leave the relationship multiple times, but she says she keeps forgiving him because he does a lot to help her. When it comes down to it, she believes that her hands are tied and she needs to keep pushing for survival.

Like Lola, Marci (who also asked that her name not be used) is a 20-something woman living in Alberta who has been common-law with her partner for 10 years. Even though she struggles to support herself and lives with bipolar disorder, Marci hasn’t been able to apply for disability benefits because her partner earns over the threshold. While she appreciates her partner’s support, this dependence has taken a toll on their relationship. She says she’s been forced to confront the terrible reality of feeling trapped because there’s no better alternative. When I last spoke to Marci, she and her partner had taken a step back from their relationship. She’s now in the process of looking into reapplying for disability. Like Lola, Marci finds surviving day-to-day hard enough—never mind jumping through the hoops of applying for disability benefits. It took me six years to successfully navigate the system, find the courage to contact doctors, and then to get all the paperwork I needed (and even then I had to appeal because the language in the paperwork wasn’t clear).

I can relate to Marci and Lola, who, despite desperately wanting financial independence, know that sometimes the most viable option is the one that gives you your best shot at survival. Even though I knew living with my parents hurt my confidence and mental health, I didn’t have the resources to leave. Income support allowed me to distance myself from my parents, and disability benefits let me cut them off completely. Having the latter gives me a sense of freedom. I don’t have to worry about relying on anyone else for survival; I can make decisions based on what I truly want. But for those who are still in vulnerable situations, other options are often homelessness—something I’ve experienced as well. And believe me, after a week of sleeping on a gym mat and wandering the street, a warm place to live, even somewhere that’s abusive—well, it isn’t even a question. This makes me sure that fewer women would find themselves in shelters if they were able to have social assistance regardless of their relationship status.

“The government expects people who are common-law to share incomes,” a social worker told me over the phone. And while this sounds like a fine deal if you’re in a relationship where you’re okay with that dynamic, it’s a poor one overall. Many women also want to share a house and start a family, and these extra expenses on one person’s salary exponentially raise the likelihood of living paycheque-to-paycheque—or make such goals simply impossible. Not only does this put all of the pressure on the breadwinner, but it can create a dynamic in which the person with a disability feels like a burden—an awful place to be in a relationship that’s supposed to be based on love and support, and when the rest of the world already underestimates those with disabilities. Even worse, if the relationship doesn’t work out, they’ll have to apply for disability benefits all over again after giving them up.

Of course, I could lie to the government. Like many couples who live together and aren’t on disability benefits, I could say I’m living with a roommate or have my partner take over the lease to avoid tax deductions. But I’m not going to do that. Lying to the government just adds to the stigma that people on social assistance are lazy and misusing people’s tax dollars. After all the work I’ve done to get to where I am, I’m not going to risk having my financial independence taken away. Instead of the Alberta government giving people no other option than to try to get around the system, it should take a hard look at its old-school views and remember that women are equal to men. Women with disabilities shouldn’t have to worry about losing their benefits because of how much their common-law or married partners earn.

Marci says that she has no idea what the future holds. She’s scared, and like me, the lack of stability and support has only made her mental health worse. She believes she’ll either get some kind of support and be able to finally focus on her needs—or she won’t. It feels like a gamble, and if she loses, she’ll have to continue to struggle with part-time work and stay in her relationship for survival instead of love. “Not every couple shares money,” she says. “The people applying for disability are not the ones living in mansions with happy, healthy marriages. The people applying are the ones who need it. The government shouldn’t be able to say some disabilities and living situations are more or less valid than others.”

I’m not sure what the future holds for me either. I currently live a life full of purpose while working on my freelance writing and magazine, and my partner and I are happy living separately for now. But maybe one day we’ll get tired of making the trek to and from each other’s apartments and decide we want to share the same space. Whether or not he takes a job outside Alberta, we’ll always have to live knowing there’s going to be distance between us. It’s true that respecting the others’ need for independence is a key component in what makes our relationship so great, yet having that independence forced on us isn’t what I expected when I told myself that I would one day take care of myself.

As a woman with a disability, I acknowledge that I’m lucky to have disability benefits in the first place; it’s incredibly difficult to qualify. Speaking out about the flaws within the system comes with a fear of biting the hand that feeds me. But progress has been made to increase disability benefit amounts and to raise awareness of how a person can afford to eat on social assistance. More and more women are writing about what it’s like to live with a disability to break the stigma that we’re lazy and misusing tax dollars. I’m happy to be one of them, and I feel confident that if we keep working to tell our stories we’ll come to create change. We need to keep fighting for our rights as citizens—and we can do it. After all, we’ve felt what it takes to overcome so many obstacles already.