“I’m always hesitant to talk about my disability because it’s a story that’s used by others to push agendas outside of what I want. Stories of disability are often reduced to the category of tragedy and inspiration, but very little else. In the end, this is no difference than the medical system that reduces me to a list of symptoms and expects outcomes.
We make disability a fact of the body or entirely about a person struggling after some sort of personal loss, and we never take a larger perspective at how we as a society make public spaces inaccessible, and how we individually create the obstacles that disabled people must ‘overcome.’
When people hear I have a chronic illness, they often ask me how it ‘happened’ or want to know if anyone else in my family has something similar. Even medical professionals have tried to tell me my illness is a response to poor anxiety management (this is actually a misrepresentation of data). I think it’s because we want to create a sense of control or predictability over disability and health, but the honest answer is there were no warning signs and I was a healthy adult, I ate well and slept a lot, I rarely worried about anything beyond my next university exam. Then one day I woke up without the use of my dominant hand.
It then took 10 years (2010–2020) of constant advocacy to get a treatment that actually worked. I lost my twenties to the medical system, having constant examples of times doctors admitted there was only one option likely to help me (the one I finally received this past December) but (because it’s expensive) I had to first try a series of medications with side effects worse than my actual symptoms. Our healthcare system makes decisions based on dollars and funding, and not on the cost to the individual. And I don’t think any medication is expensive compared to the loss of a decade. But the more I tell this story, the more responses I get from others in the disabled community about how they were also forced to pay out of pocket for life-sustaining treatment, or their mobility aids weren’t covered, or they nearly died in the hospital before a doctor even believed their symptoms were real. This isn’t the case of ‘one bad doctor’ or my illness being exceptional; this is a pattern and an indication of a systematic problem. And that’s before we add a global pandemic to complicate things.
As a writer and content creator, I seldom create anything for educational purposes. My intention is never to explain disability to someone who has never experienced it (I believe in the non-disabled community’s ability to use Google), but instead, I focus on how to empower other people in my community with words that may resonate across disabilities and connect us in our struggle. Accessibility and disability rights are as nuanced as disability itself, but there is plenty left that we have in common, including feelings of loneliness, difficulty setting boundaries from a vulnerable position, and the frustration of being denied resources. If disabled people are isolated in the stories that represent us, then we are isolated in the experiences we have. So when I tell my story, I tell it to the disabled person who needs to hear that it’s not just them who’s struggled to access resources.
When I was in university, there was an Introduction to Critical Disability Theory class. As a disabled student, I was more than excited to engage in this conversation to study the patterns of social discrimination, how the definition of disability has evolved over history, and how disability can be perceived as a culture and community. Instead, I spent a semester answering to a non-disabled professor who was from the Department of Gender Studies (because there is no department for Disability Studies or any real program focusing on the material). This professor likened women wearing high heels to being disabled because it slows down how fast you can run and limits your mobility. As someone who was walking with a cane at the time, I tried to explain how this metaphor was a little insensitive to what the experience was honestly like, but was unsuccessful in convincing her or the rest of the class.
Objective discussions were poorly informed and triggering, such as, ‘Should the chronically ill be proud to be disabled when they’re still hoping for a cure?’ (The class decided no, openly discussing how there’s very little to be proud of and I was given no more authority on this subject than my non-disabled peers), ‘Are disabled people in a situation similar to domesticated animals?’ (I am serious, this was what class time was spent on because the professor was vegan) and, related, ‘So vegetarians face the same stigma as people with mental illness?’ (I can’t make this up). This experience was so detrimental to my mental health that I wrote about it in my upcoming play, The Only Disability is a Bad Attitude (and I Have a Bad Attitude), which I fully intend to make available virtually for purposes of accessibility.
When I searched for a master’s program that focused on disability, I could only find programs that relied on outdated information from the period of time when disabled people were locked in institutions and forcibly sterilized (more recently than you think). The curriculum for these programs focused on how to help disabled people access systems that have only ever traumatized me, like healthcare (please look up Medical Gaslighting) and social services (please look up Abled Saviorism). There were only two programs in my country that actually focused on the disabled experience of struggling to access public space, but neither of them offered online classes so they weren’t accessible for me to attend (please look up Irony).
So what did I do instead? I downloaded every article on disability that I could from my university library before I graduated (except the articles on disability that were written by non-disabled authors for the same reason that my Critical Disability Theory professor fell short on the subject) and I purchased books that those authors recommended for more information. I acquired a university perspective on my own and taught myself how to academically engage with my personal experiences. This has been a driving force in my writing: I have ensured that I am not lacking the academic perspective, but until universities make the effort to be more accessible, they’ll always lack my perspective. And since one can be replicated in the dozens each semester by reading a series of books and articles while the other only comes with ten years of suffering and contemplation, I would value my perspective much more highly.
And I would like to take a moment here to acknowledge how absolutely privileged this journey has been. If I had an intellectual disability, I would never be allowed to talk about my own experience at an academic level because I wouldn’t have access to the confusing language or complicated processes; a lot of our understanding of disability comes from people who have never experienced it. That’s incredibly dangerous. We know from a historic context that when others speak for marginalized communities, that community loses.
I am disabled, neurodivergent, and I am intelligent. I am ‘palatable’ disabled because I still produce labor in a capitalist society (I ‘still’ provide value). You’ve seen the person who works long hours every day and fully commits their time to their job, and how they’re complimented for their work ethic even when their mental health is suffering? That’s along the same spectrum of how disabled people aren’t assigned value (or rather the value is withheld from them) when they’re unable to work. It’s how we justify keeping them statistically below the poverty line and failing to make resources easily accessible. I should not be complimented for how much I’ve accomplished ‘despite’ my disability, but rather despite the barriers that are in place for the disability community. My body is not the obstacle, ableism is. And my ability to overcome these barriers relies significantly more on how ‘healthy’ and ‘typical’ I can pretend to be rather than any innate abilities I possess.
So what does the inspiration trope look like in disability? How do we identify it and how do we try to make the picture a little more encompassing of a human experience?
There’s no single depiction of disability as an inspiration trope, but often we see it where disability equates to tragedy and where we, the audience, are made to feel good while the story is told. Many times, the disabled person is not the one speaking, but rather their caregiver speaking on the ‘difficulties’ of being in proximity to that disability. We’re taught all the ways that a disability signifies loss, but there’s a lot more to it than that. Also, if being in a wheelchair is only tragic because now you can’t use stairs, then why aren’t we using that ‘tragedy’ to push for more ramps in public spaces?
I love my disability. I think that my chronic illness has connected me with my body; my symptoms flare when I am stressed or scared, and they’re most debilitating when I push myself too hard. How many of us spend our entire lives working long hours and forgoing our boundaries to please others, never really thinking about how it affects us? My chronic illness has forced me to make myself a priority in the way that non-disabled people never do. And it’s shown me how I’m connected to my environment; how very little changes need to be in order to have an impact. Something as simple as the weather can cause my joints to react. I’d like to speak more about the beauty of this experience, but first I need people to understand disability as more than one thing— the suffering still exists, the hard days of being bedridden and alone, the loss of friends. When I make my disability into poetry, there is still pain behind it. Not inspiration or tragedy, not good or bad, but something more complicated. And very likely my story would hold value to non-disabled people just as much as it does for disabled people, but non-disabled people need to show me that they’re safe to tell first.
The truth is, I spent 10 years asking doctors to help me while inflammation crept through most of the joints in my body, while I lost my ability to walk for periods of time, while I was spending almost every day in so much pain that I couldn’t leave bed. I gained a lot of insight and introspection in the many hours I’ve spent staring at my ceiling with nothing else to do but for all my gratitude, this did not come lightly. I lost permanent use in both of my hands, I lost my hair (side note: bald is more comfortable and I love it, I’m never going back anyways), and dangerous people who saw me from the ‘disability as tragedy’ perspective took my physical traits to mean that I could be easily taken advantage of.
Women with disabilities are significantly more likely to be targeted by abusers because they’re seen as dependent on others, weak, and desperate for partners. When I spoke up about my first abuser, people told me to just be happy that someone would date me. When I spoke up about the second, people asked if I was just being too picky. I’m sorry to say that I stopped speaking up around the third one (there were more, and this isn’t specific to me, this pattern persists across the disabled community). This is why I want more nuanced and accurate portrayals of disability: representation teaches people how to read situations that others are in and how to respond to stories that they tell. If disability is only ever caricatured into weakness and a lack of agency, then we can’t effectively protect disabled people when they need help.
When you have a disability, people try to render you an inspiration. There are entire industries built off of exploiting disabled stories for profit while the disabled person never sees a penny. Charities focus on research to ‘cure’ a disability rather than raising money to provide accommodation for the people living with that same condition. It can be frustrating because it’s a public discussion about us that never actually includes input from us: What tangible resources do we want? Do we even want to be cured? Why in all of these charities are there never disabled people represented in the executive staff, if this is supposed to be for us? If the industries that exist for us don’t show confidence in our ability to be leaders, then what does that say?
If you want to learn about disability, please listen to disabled voices. Especially if you work with disabled people and you’re only informed by inaccessible sources. If you follow disabled content creators, follow more than one. Don’t just follow white, straight disabled content creators, find intersectional voices. Follow accounts that challenge you or make you uncomfortable; we’re too used to disabled stories having to make us feel good about ourselves and it reduces the spectrum of the experience.
I’m not here to inspire you, but I hope you’ll do the research on your own so we can talk about this on equal ground. I have a lot to tell you.”
This story was submitted to Love What Matters by Cynthia Decore from Alberta, Canada. You can follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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