Foreword
While experiences of disability are multiple and various, one of the rare unifying experiences of disability is being told, outright or otherwise, that you have (are?) a problem. Whether it is the random stranger who inquires “What’s wrong with you?” or the awkward waitress lamenting “Our restaurant is not equipped for your needs” we are routinely conditioned to understand our needs as both special and singular. The individualizing of disabled experiences is an insidious trick of ableism as it both absolves the broader community (you’re the problem, not us) and normalizes overcoming desires (you should try to fix it!). Perhaps more than most in society, disabled people are regularly given a front row seat to the self-disciplinary demands of neoliberalism: your health or debility is wholly in your hands!
How might the world be different if we instead situated the problem of disability within the ableist structures of neoliberal capitalism? What if we spent as much time making the world inclusive as we do trying to eliminate disabled people? As noted by the Union of Physically Impaired Against Segregation (UPIAS) in 1972, perhaps wheelchair-users would not be “disabled” if not for the inaccessible world they find themselves within.
The central pivot of the social model of disability, then, is to focus on disabling conditions created by environmental and structural factors as opposed to striving to make ‘normal’, through treatment or cure, the biologically different. Although an imperfect model (see Shakespeare, Tom…), the social model of disability provides language by which to articulate something many of us have felt for years—perhaps we are normal people born into world that works quite hard to deny its abnormality. If that is the case, that we are all part of the problem, suddenly the pathway forward becomes clear. It means not just cutting curbs or building ramps, although that would be nice, but also giving ourselves permission to secure our human rights and not just our ‘special’ needs. It means that we need to change, all of us, if there is any hope in deconstructing the material and psycho-emotional consequences of ableism.
Jeff Preston, PhD
Associate Professor, Disability Studies
The Myth of Sisyphus with Disability
In the spring of 2021 I was having a discussion with my friend in his backyard about our unique experiences growing up with two very different physical disabilities. Eventually I brought up the topic of memoirs – how a mutual friend of ours had suggested that I should consider writing one. I shared how I struggled with the idea of why my story should be seen as unique or even important enough that anyone would want to read it. I was most concerned about the fall out conversations I would have to have with readers who felt that my story was “inspirational” to them. We agreed that we had served enough time in our youth as inspirational figures by serving as regional mascots for the Easter Seals Society. Between us there were too many pats on the head and “you’re so brave”’s to even start to count.
That’s when my friend shared an interesting take for how he wanted to handle his memoir. It would be set in a dystopian future where Medical Assistance in Death (MAiD) had progressed to a point where people with disability didn’t have to apply for assistance in dying, rather we had to plead our case as to why we should live. I thought it was an incredibly unique idea, but personally thought my friend was being a little on the dramatic side with his premise. Surely the MAiD program would never get to the point where people without a terminal diagnosis would apply for it.
However, I was still fresh on my journey of reconnecting with my identity as a person with disability and very naive about what it is like to live in Canada as a person with a disability. I should probably disclose a few key things at this point. First, I was diagnosed with Osteogenesis Imperfecta (OI, or brittle bone disorder) at birth. Having had countless fractures and surgeries in my childhood, I was relieved when they slowed down almost to a stop in my teen years. Secondly, this occurred around the same time when bullying started to happen in high school. I wanted to be seen as anything but the “disabled kid”. I focused all my energy on blending in. This meant disassociating myself as much as possible from disability . I would downplay and overcompensate for my disability, and say things like “oh, I’m not like that” or “I try not to whine about things”. For me it was the highest compliment to hear from a friend “I don’t see or think of you as disabled.”
This happened around the same time I became legally old enough to drink. Which helped in two ways – I could go out and be social by drinking with my peers and the numbing effects of alcohol really helped silence the anxiety I had about fitting in. It’s worth noting that at the time of the conversation with my friend in his backyard I was coming up on having a year of sobriety and I was really focused on reconnecting with the disability community.
I have thought about my friend’s memoir premise more and more ever since that day. How bad really is it out there for a person with a disability? Aren’t there social support programs to help all people live healthy and fulfilling lives?
At its core the Ontario Disability Support Program (ODSP) is intended to provide financial assistance to an individual with disability who is unable to work. The problem has become that this funding hasn’t been adjusted in years, and it certainly has not kept up to inflation rates. Currently, a recipient gets a monthly maximum amount of $1,169, or $14,028 a year. To put that into context, the same government deems the poverty line to be $20,000 for a yearly income. This leaves an ODSP recipient at roughly 40% below the poverty line. To add insult to injury, the application process for the Ontario Disability Support Program is incredibly difficult to navigate. This leaves you to feel lucky if you are even approved for it. Obviously, folks are struggling and most of the time counting down the days until their next payment at the end of the month. It really is no surprise that with no other options, some feel like they have no other choice other than to apply for MAiD. Seriously, it’s a thing here in Canada, feel free to look it up. Just type CBC ODSP MAiD into google.
Clearly in the opinion of society a line can be drawn between a person’s collective worth, and what they can contribute to our capitalist society. Ableism is the discrimination against people with disability, and it is a close bed fellow to capitalism. Rarely are concessions made to make access to employment an equal and level playing field. There is a lot of big talk about it, but I can speak to the reality that there is rarely heartfelt follow through. I have seen decades of politicians making campaign promises, only to back down when they realize how costly it will be to make systemic changes. Not just costs to them, but also the businesses who supported their campaigns.
I have been struggling to find full time employment for a few years now. I graduated from a graphic design program at a college not too far from my hometown. I would come to understand that a lot of people from a lot of other colleges close to their hometowns have the same story. That the designer marketplace is not short of fresh bodies who are willing to work for less and give away more work. Making any job in the field highly sought after and driving down prices for freelance work. This is why I was lucky, or why I was told so, to get a job in a print shop that was owned by a friend of my father.
There were a lot of great things to learn about traditional printing and prepress work. The down side to this kind of design work can be that it is very limiting in the variety of styles of work that you eventually get to put in your portfolio. While my friends were slowly working their way up the ladder from copy shops to agencies. I was happily plugging away at shop life becoming a huge print nerd. To this day I can talk your ear off about halftones and separations.
From time to time I would think about moving on from the shop, that’s when someone (usually my parents) would chime in with, “you should consider yourself lucky to have a steady job.” Though it was true, I came to understand that this phrase is one of the greatest forms of gaslighting people with disability face. When we voice our concerns they are more likely to be dismissed as insignificant whining than legitimate insights. Oftentimes, we are mistreated or discriminated against and told to be thankful we are even being acknowledged. We know that the only other option is to be dependent on a government who is just as interested in providing us with a “humane death.” This is why if you ever see a billboard encouraging employment focused disability inclusion, the number one talking point is often how “loyal and hardworking” people with disability are. Needless to say, I stayed too long working at this print shop. When it was time to move on, I learned just how badly I had painted myself into a corner.
Not only did I struggle to pull together a strong enough portfolio to start applying around town, I discovered an even larger barrier ahead of me. Most agencies and marketing firms are in converted heritage houses or second floor loft spaces with gorgeous exposed brick walls. Even the Creative Professional’s networking events were held in inaccessible venues. I was left at the bottom of the stairs while my peers won door prizes and made valuable business connections leading to those sought after second story jobs.
After spending almost a year on the job hunt, a good friend of mine landed me a job at the company he was working for. They didn’t even look at my portfolio before offering me the job. It was an on the rise marketing/printing company that promised a lot of opportunity. Though I got to build on my portfolio and skills while working there, I also witnessed a toxic work environment, and learned a lot about what ableism looks like in a professional setting. Things such as being left out of meetings, spoken down to, treated as the scapegoat on failed projects, patted on the head and outright called names by the owner of the company. Unfortunately, I was stuck there because, at the time, my partner and I were trying to start a family and I had already once seen how hard it was finding new employment. The resounding chorus of gaslighting, “you should be grateful you even have a job,” was a deafening constant. After four years of working there, I was let go without cause. It was a blessing and a curse — it was also the beginning of a very challenging time of my life.
In the time between leaving that job and where I am now, a country album’s worth of life events have transpired. I lost a prematurely born son, my long-term relationship blew up, I went back to college for web design, barely finishing because my bad relationship with alcohol turned into a full blown addiction. Then, a global pandemic magically manifested. It’s a lot, I know, and it’s not really what I am trying to talk about here. After all, I am saving those stories for that country album. Or maybe more essays like this — the future is unwritten. But the real point I am trying to make is that I’ve been sober for over two years now. This acted as a much-needed catalyst to begin putting a lot of work into who I am as a person with disability, which truly has been a challenging and enlightening journey.
When I went back to college to expand on my web design and development skills, an opportunity to apply for an internship at a local tech company affiliated with the school came up. My class toured their office – an accessible and modern workspace with, surprisingly, a lot of familiar faces. The company had even just posted on their blog about the importance of hiring people with disability to encourage the growth of a more inclusive and stronger community. With my previous work experience, I felt certain I was an ideal candidate for the internship. However, the day after the post, I found out I didn’t get the position. This wouldn’t be the only time something like this would happen in my continued search for employment.
Recently, a self-proclaimed “social justice minded” marketing company posted a graphic designer job listing on their social media account. Their application even had an amazing question asking what cause are you a social justice warrior for. Two times the job was posted and twice I didn’t get the job. I tried not to take it to heart and told myself it’s likely because of my portfolio not being strong enough. Though the sting would come when one of the owners of the company (who I know through a mutual friend) reached out and asked if I would be the guest speaker for their social justice themed book club. They had picked Disability Visibility by Alice Wong (a great read, by the way) and wanted to know if I would like to come and share my life experience and maybe participate in a Q&A. He also made it known that this would be a paid gig. I don’t think he realized how much of a blow his offer was for me. Being shot down for a job I was likely viewed as unqualified for because of years of ableist gaslighting, only to be asked to talk about my experience with ableism. A paying gig is a paying gig and I could use the money.
Over the past summer (2022) I had two intense job interview situations play out for me. Again, a good friend lined up the opportunity to apply for a job. It happened to be at the very college I had attended twice now. It seemed promising, my friend had put in a good word for me as we had worked together previously, and the college showed some interest in me. They arranged an interview with me over zoom, and after meeting with them, I felt as though it had gone really well. I was disappointed to learn that I didn’t get the job and that they had gone with someone more “personable” than me. It wasn’t until later when I found out that while I was given a zoom interview, the rest of the candidates were given in-person interviews. The experience really set me back, leaving me wondering how I could get a job if I wasn’t even able to get in the door in the first place.
That being said, I had no idea what I was in for with my next interview. I found the job posting on the website Indeed, and their requested qualifications basically read like my resume, right down to the prepress work at my first job. Again, a zoom interview was lined up. I prepared myself as usual and felt very confident in myself. The woman I met with was the manager I would report to, and we spent the better part of forty-five minutes talking about our shared common print world experiences. Right down to the antiquated prepress software we were both trained on. Even our personal chemistry clicked, which was nice because it was obvious we would be working closely together. I could tell the interview was wrapping up and she said she had one last question. She asked if I would feel comfortable making printing plates while she was away on vacation. Having done this thousands of times at my old shop I figured it wouldn’t be an issue. However, up to this point I hadn’t disclosed my disability. I said that I didn’t see it as an issue as long as it didn’t involve any heavy or awkward lifting. I then said that I am a person with disability, that means for me that I use a manual wheelchair and am able to both stand and walk short distances unassisted. For these reasons I am limited in what sorts of physical labour I am able to do.
The whole mood of the interview changed. The interviewer disclosed that the job posting hadn’t stated that a requirement for the job was the ability to walk up a flight of stairs to access the prepress equipment. I suggested that maybe a workaround or solution could be found and she essentially put her foot down stating that she saw absolutely no way of how that would be able to happen. Grasping at straws I tried to at least leave on as positive a note as possible. I thanked her for her time, stating how much I appreciated the opportunity to interview at a company as well respected in the industry as theirs and that I was hopeful she might be able to consider a way to make things work. I never heard back from them after that.
To say I find myself in an existential dilemma would be an understatement. I am a creative person. I enjoy and find fulfillment in finding creative design solutions to peoples communication/marketing problems. Though, what is the solution when the thing that was the source of your livelihood starts to be the source of your questioning of your very existence? Why does it feel like for every move forward, there is more movement backward? Why does existentialism always feel like it creates far more questions than it answers? What does it all mean? All that I know is that the answer isn’t 42.
Around this time, a friend who knows I am going through a rough time sent me a link wanting to know what I thought about it. The title was Disability Inclusion Imperative (the white paper), and I believe Adecco’s (a staffing agency) intention was to improve disability representation in the workforce. The more I read, the more I understood how deeply entrenched ableism is in our capitalist society. The opening lines read “Persons with disabilities are too often missed from companies’ hiring and inclusion agendas,” and “mining untapped talent pools for great permanent hires.” It only got worse from there:
“What if we told you that a huge, growing talent pool – brimming with innovative potential – is being overlooked by many employers, even during today’s labour crisis? What if we told you that this group has been reported to have average retention rates of 85% after one year of employment? And that some companies with this group well represented on their workforce enjoy 28% higher revenues. 2x higher net income. and 30% higher profit margins?”
But wait! There’s more!
“With the pandemic prompting people to re-evaluate their careers, we believe employers must capitalize on the Great Resignation to reimagine the composition of their workforces. It’s time to rethink outdated hiring processes, reach out to under-represented populations, and capture that highly skilled and overlooked talent for long-term success.“
Not only does the piece sound like they are selling people with disability as ripe for exploitation, it also suggests using us as scab workers. It stops short of saying “they will just be happy to have a job,” which I have heard far too often already.
Let me throw some numbers around to add some context as to why these statements are so alarming. The University of Toronto published a piece in 2020 stating:
“Many also live in poverty – as high as nearly 30 per cent, according to the Statistics Canada data. Only 59.4 per cent of Canadians with disabilities were employed in 2015, compared to 80.1 percent of the rest of the population.”
While the government of Canada’s website adds:
“Canadians with disabilities aged 25 to 64 earn less than Canadians without disabilities (12% less for Canadians with milder disabilities and 51% less for Canadians with more severe disabilities).”
This is the community of individuals Adecco is suggesting you look to hire from for the replacements to the workers who are just looking to make a living wage in the first place. A community where people are choosing to apply for government provided Medical Assistance in Death rather than live on the social assistance they are provided. That same cheque I wait for at the end of every month these days while wondering what my worth truly is as a person with disability in this capitalist society.
After recently finishing Albert Camus’ book The Plague, I was doing a bit of research on Wikipedia about him. Having always thought of him being touted as a great French existentialist author, I was surprised to find out he considered himself an absurdist. Absurdism is a philosophy based on the belief that the universe is irrational and meaningless and that the search for order brings the individual into conflict with the universe (I stole that out of the dictionary as I couldn’t summarize it any better). This continued conflict being the absurdity that is life, which is something that I could profoundly relate to.
I stole the title of this essay, and the patch that I designed, from Camus’ essay, The Myth of Sisyphus, where he first introduced the philosophy of absurdism. Again, here I am going to use a quote by someone much more qualified to condense the themes of the essay, the Encyclopaedia Britannica:
“Camus argues that life is essentially meaningless, although humans continue to try to impose order on existence and to look for answers to unanswerable questions. Camus uses the Greek legend of Sisyphus, who is condemned by the gods for eternity to repeatedly roll a boulder up a hill only to have it roll down again once he got it to the top, as a metaphor for the individual’s persistent struggle against the essential absurdity of life. According to Camus, the first step an individual must take is to accept the fact of this absurdity. If, as for Sisyphus, suicide is not a possible response, the only alternative is to rebel by rejoicing in the act of rolling the boulder up the hill. Camus further argues that with the joyful acceptance of the struggle against defeat, the individual gains definition and identity.”
If I follow in the same path as Sisyphus in the rejection of suicide (or MAiD), my only other option is to revolt. To kick back against the pricks. To claim my identity as a person with disability and fight back against the systems trying to maintain oppression over me.
Every time I have to disclose my disability and have conversations surrounding it. Every time I have to use google maps to see if a potential workplace is wheelchair accessible. Every time I have a fracture and have to rehabilitate from the injury. Every time someone asks “what’s wrong” with me. Every time I have to explain why I have to do something differently because of disability… I start an uphill journey. The difference between Sisyphus and I is that instead of pushing a boulder, I am pushing myself up that hill.
Sisyphus was given his task as punishment for cheating death, and some days it feels like that is what the disabled life experience is a series of tasks we are forced into because of our diagnoses. Perhaps, this is only because we have accepted society’s view of ‘normalcy’ and imposed internalized ableism upon ourselves. What is collectively known as normalcy is a fallacy. We only harm ourselves by comparing ourselves to others. The only true normal is what we accept as truth for ourselves. Whatever you need to do to live a happy and healthy life is normal for you, and that is all that matters. If I continue to follow the same path as Sisyphus in the rejection of suicide (or MAiD) my only other option is to revolt. To kick back against the pricks. To claim my identity as a disabled person and fight back against the systems trying to maintain oppression over me.
We are at a critical time where our government cannot be relied upon to support our basic human rights. A large barrier keeping us from collectively raising our voices in opposition to systemic ableism is that we are already using so much energy just to meet our basic needs. There is a struggle on the daily, hourly and even minute by minute level that keeps most of us from organizing. I learned a great lesson from Leah Lakshmi Piepzna-Samarasinha’s book Care Work: : Dreaming Disability Justice. That is the importance of communities focused on interdependent care. In a world where it is difficult to find allies, we need to find ways to be able to help one another. Even if it’s as simple as being there, listening to a friend vent their frustrations at you; this simple action can have tremendous results. The more we speak of our life experiences as people with disability, the more confident and accustomed we become asking for what we need, and what it is our right to have. We start to build back the confidence capitalism and ableism have worked so hard to strip us of.
Camus ends his essay with the lines, “The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.” Though it is daunting, and at times seems as though I will never reach the summit of the hill I am on, I now understand I am not alone. Unlike in the story of Sisyphus, there are many other people pushing themselves up their own hills, just as I am doing. Though like all communities we struggle at times, there is still a tremendous power to be found in interdependence. In knowing we are not alone. In struggling together, when we have enough spoons to share. There is a great beauty to it, one that is unmatched in any other community I have found. It is here, in this space with acceptance of the absurd, that I am able to fill my heart.
