surviving a pandemic as a disabled person is a special kind of trauma

i’m katie wills evans, an educator, writer, and general internet delinquent. i spent my twenties trying to fit the ableist, capitalist, heteropatriarchal mold and trying to get a diagnosis. currently, i’m operating under the diagnoses of C-PTSD, fibromyalgia, and asthma with a side of post-COVID symptoms. more honestly, i’m trying to undo and live with what has happened to my body and my mind after two and a half decades of constant stimulus and stress punctuated by surviving acute traumatic events.

i’m privileged to finally have (relative) financial stability, meds that help more than they hurt, and consistent therapeutic support (medical and otherwise). this has allowed me to get rid of a lot of the people, places, and things that were making me feel worse. because of this, i’m in less pain and having fewer flares. the unexpected sharp pains, sudden numbness or lightheadedness, and strange skin reactions to temperature or stress have decreased. the fatigue, however, has gotten worse since COVID. i’ve had to completely readjust to a new bodily reality. again. when i tried to return to my job in person for half days, i ended up sleeping for hours every afternoon after i got home from work. it was groundhog day, no bill murray. i had lived like this for years and i refused to go back.

the problem is, people understand pain even if they don’t understand what it means to live in a chronic state of it. people know what it’s like to be tired, but they don’t know what fatigue is and they can’t imagine what it’s like to be in a chronic state of it. but they THINK they can because they’ve been sleep deprived (which they think is the same thing). they have no understanding of what it means for there to be no cause or solution for the tiredness. our society sells solutions and cures and runs on one size fits all schedules. it has no interest in flexibility or accepting differences without a cure.

so picture yourself now: you’re a disabled person who finds themself sick again and living in a society whose initial reaction was to say “only the elderly and sick will catch this deadly virus” as a way to comfort everyone else. the same society shuts itself down entirely when it becomes afraid ableds might become sick too. now all of a sudden, it IS possible to work from home and people start to understand that staying in all day isn’t the vacation they thought it was. a couple months go by and it turns out mostly black and brown people are dying (1 in 1000 black people have died from COVID) and everyone goes back to what they were doing before, but with a mask on. except for those of us who had this virus who are still not back to our (already lowered) capacity from before. we are expected to go back to how things were before except with more risk, less capacity, and the knowledge that it’s fully possible for things to be done differently in a way that would reduce how much harder all of this has made your life. your society isn’t interested in that though because it just wants that stock line to go green and to be able to go to restaurants again.

it’s a good thing that in some ways, disabled folks were more prepared than most for a pandemic, because the specific trauma of surviving a pandemic as a disabled person in an ableist world takes a fucking lot out of you.

rest in peace to all who have lost their lives in a mismanaged pandemic. all gratitude to disability activists and organizers who have fought for us (especially the black and brown folks who led the way).

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what would dispatches from a community undoing the isms and trying to like and love themselves sound like? we’re a queer, abolitionist, anti-ableist, pro-black collective trying to do more than survive. join us.

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katie wills evans

katie wills evans

educator and writer who is most interested in freedom dreams. i hope this work is useful.

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