Among my many wishes is putting an end to ableist tropes
We need to change how society views chronic illness and the disabled body
There’s a myth out there that “a healthy person has a thousand wishes, but a sick person has only one.”
As someone with cystic fibrosis (CF), I’ve never had a body I could call healthy. At my sickest, I was bedbound for weeks at a time, unable to breathe. I had to drop out of college because I was too sick to keep up with the work and to advocate for accommodations when instructors were unwilling to meet me where I was at. Needing to delay a dream is not the same as losing my ability to want it.
While I’m not sure where the quote originated, it strikes me as a sort of consequence of the kind of bad-faith interpretation of the reality of chronic illness that Maslow’s hierarchy of needs seems to encourage, something I’ve talked about before. Plenty of present-day writers and speakers recycle the phrase, and regardless of whether they intended for their words to be hurtful or not doesn’t negate the stab of pain in my stomach when I hear it.
The phrase portrays the disabled body as something awful, perpetuating the stereotype that my existence should be unwanted; that my dreams are unfathomable. It paints a rhetorical image that I’m so bad off I don’t have the capacity to want something outside of my disabled body, and that I’m unable to untangle it from any other part of my self.
The implication that sick people like me are only capable of wanting better health is a fundamental misunderstanding of the human condition, and what it means to live, want, and experience emotions. That couldn’t be further from the truth.
A nonexclusive list of things I wish for
I want to publish my collection of poetry, to hold it as a real book in my hands. I want to write a second collection of poems, or perhaps a novel. I want to finish the translation of the Old Norse Poetic Edda that I started in my master’s program at college, and I want it to find an audience.
I wish for love, and weekends watching football while my partner and I munch on an endless supply of charcuterie snacks as the days stretch out before us, our worries distant.
I wish my dog would stop barking at the deer wandering by in the woods outside my house. I wish for community care and disability justice, where neighbors show up for neighbors and we all meet everyone where they’re at.
I wish for affordable groceries and a stocked pantry, and that my curbside pickup order will be fast and efficient. I’d like to find a reliable handyman to fix the rotten wood around the chimney. I wish for my students to succeed beyond my classroom, and that I didn’t have to worry about whether they’re using artificial intelligence or plagiarizing.
Some of my wishes are connected to my sickness. I wish that asking for accommodations was easy, like asking for ketchup at a restaurant. I wish filling my prescriptions was easier. I wish that dealing with health insurance companies didn’t take hours for every interaction. I want to feel listened to by my healthcare team. I wish for a CFTR modulator that all CF patients are eligible for, and that it would have greater efficacy with fewer side effects.
Above all, I wish that people would unpack the casual ableism so often thrown around in societal narratives so that they wouldn’t say things that are untrue about my lived reality.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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