“What Does Disability Pride Mean In 2020?”: An Incomplete Essay I Started in July 2020
Note: I found this when sorting through my Google Docs today. I could go back and finish it, but it was written at such a specific moment in the early days of the pandemic, so I’d rather publish it as is. It briefly touches on many issues I will likely be talking about on here though.
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July 2020
I technically have been part of the disability community since birth, I just didn't have a diagnosis for my ADHD until adulthood. I was diagnosed with Fibromyalgia as a child, at age 11. I didn't know this made me a part of the disability community, I didn't really even know such a community existed. But I did know I was different from my peers. I did know I was not able to do many of the things they did, like make it through a 6 hour school day without a trip to the nurse's office or going home, or keeping up with a regular course load, or getting perfect attendance, or gym class (for most years after my Fibromyalgia diagnosis, I was allowed to meet my physical education requirement through physical therapy, yoga, or trips to the YMCA instead of gym class). I experienced ableism before I knew what it was called, before I understood why it was happening, before I knew there was a community that fought against it.
When I first heard the term "able-bodied" as opposed to "disabled," internalized ableism caused me to identify with it. This is partially due to me questioning my Fibromyalgia diagnosis as an adult due to shame and the stigma of a poorly understood invisible illness. It is also partially due to a misunderstanding I had of the meaning of "disabled." I thought the term was reserved for people who had conditions that could be physically observed, or conditions considered more physically debilitating than mine. I thought "if I can do xyz, I am able-bodied, not disabled." This is simply not the case. My misunderstanding was due to internalized ableism, stigma, and shame that I eventually worked through enough to realize that I do have disabilities, I have experienced ableism, and I can call myself disabled. And there is nothing inherently wrong with being disabled.
2020 has exposed disabled people to more obvious ableism, both emotionally harmful and deadly. It has also highlighted the need for disability activism and inspired both disabled people and allies to fight against ableism more than ever. It has revealed that ableism is part of capitalism and there is an urgent need to do away with both.
Ultimately, the pandemic has revealed what too many of our politicians, friends, family, and even doctors really think of disabled people. That we are unimportant, disposable, worth sacrificing, not worth considering.
It is exhausting, at every turn, to be reminded of this fact. From the disabled people dying in prisons and nursing homes to our friends who go to bars without considering the impact of their actions on high risk individuals. Yes, we have allies, but it is hard not to feel sometimes that nobody cares about disabled people besides disabled people.
When talking about those who are making sacrifices and suffering right now, we often hear healthcare workers and other essential workers mentioned. And of course, they deserve that recognition. But I rarely see disabled people receive credit for the sacrifices they are making or even much acknowledgement of the suffering they are experiencing as a result of having less access to the care they typically need because of the pandemic. Surgeries have been put off, physical therapy appointments rescheduled, and so on because we know it's important not to risk spreading covid-19. But that doesn't mean that disruption to our usual care isn't incredibly inconvenient, if not physically painful, for us.
(If I finished this, it would probably mention something about disability pride as a necessary tool to resist shame and stigma in the face of the injustice of the ableism around us every day).