Disability can happen to anyone at any time. Every day, thousands of people become physically and/or cognitively impaired through external events like accidents or internal events like strokes. As humans, we are constantly (if subconsciously) aware of the fragility of our bodies, and we go to great lengths to avoid lasting injury. And while we might not acknowledge this fear, it shows up in the ways we attempt to stay “well.” Through Policy choices such as seatbelt laws, crosswalks, and mask mandates, and individual choices such as keeping sunglasses in the car for glare, eating a nutrient-rich diet, and engaging in regular exercise, we attempt to lower our statistical chances of becoming disabled or chronically ill. But the chance will never zero.
The pursuit of wellness ignores the reality that
sometimes (many times) our health is out of our control
I became disabled at age 35, in the middle of an otherwise societally “normal” life. Scrolling through social media today, I’m fascinated by perfect strangers’ insistence that they’ve got it figured out. The morning routine, the supplements, the work flow that will save you time and energy. Culture Study’s Anne Helen Peterson wrote a great piece on the optimization craze, noting her opinion that, “the ultimate driver is the possibility of perfection, exemplified by the curated and omnipresent feed.” I agree, and in my former life, I might have been a fan of a “life hacks.” But I was disabused of the notion of bodily perfection the moment I lost the ability to use my entire left side, and I’m glad to have learned that lesson, difficult as it was. Now that I live with both gross and fine motor impairments, I’m struck by the way not-currently-disabled people toss around phrases like, “so easy! just jot this down,” or “make a quick list.” I am still learning to write with a pen, three years after my disabling event. Yes, I do things electronically because I need to, but I was an avid list maker and doodler before I lost that ability, by chance, one random Friday in June.
However, there is something to the optimization moment that disabled people have known forever. What influencers call “hacks” that save time and energy are often essential strategies I use to get through my daily life. For me, there actually is a best way to do tasks because of my limitations. I wear a vest almost every day because I can’t carry a purse. I eat a specific diet to control further inflammation in my brain. I do grounding meditations daily because if I don’t, the brain fog will win, and my day will be cut short. I wear the same sneakers every day. Making tasks easier or faster to complete is not just a nice touch that persons with disabilities can pick up or put down at our leisure. Ease of use is an essential accommodation strategy.
In the United States, conversation about disability is still taboo and heavily steeped in the language of "the comeback." Take, for example, the media’s inability to fit US Senator John Fetterman’s stroke and mental illness neatly into the comeback narrative. As a person who has been through a situation very similar to Senator Fetterman’s, I know that stroke and neurological injury is so much more complex than a headline, or even a basic story arc. Our cultural scripts are not equipped for facing the reality of permanent or dynamic disabilities. In the first year after my disabling event, I still viewed "getting better" as synonymous with "getting back to normal,” not fully understanding that normal and better are social constructs. The pursuit of wellness ignores the reality that sometimes (many times) our health is out of our control. And when a Senator in the public eye is suddenly "different," the discourse becomes about one person's setbacks, rather than our collective dismissal of reality.
The idea of fortune once implied something closer to luck, which can be good or bad, or, as Hamlet famously mused, outrageous. See also the fates and furies, or the more American win some / lose some; shit happens. Cultures throughout time and space have shared an understanding of our human inability to get the last word on our lives, our bodies, and our eventual deaths. Try as we might to optimize our diet, schedule, and productivity, we will always be subject to the spinning wheel of fate or acts of God or the universe that could change everything in an instant. It’s no wonder people would rather not think about these existential realities, but the current movement to optimize our lives is a rejection of the powerful universal mysteries of life and death.
I wrote this somewhat in response to Peterson’s piece, after a comment I made in the paid Tuesday thread resonated with many readers. If you’re here from the comments section, hey! I’d be honored if you would subscribe!
If you found this article interesting, how about sharing with a few friends - especially not-currently-disabled friends!
Erin Ryan Heyneman is a disabled educator, creator, and speaker. She is also a Commissioner on her city’s Commission on Disability. Find the rest of her work here.
As a disabled person, this really resonated with me. I'm a huge proponent of making things as easy as possible, like putting the dishes away in the dishwasher in an organized fashion so putting them away is easier and requires less bending over, thereby saving energy, or if your energy levels call for it, bring out the paper plates. Use the assistive technology! Sleep when your body calls for rest! I worry a lot about able-bodied folk because they tend to ignore their bodies until their bodies demand to be heard. They think they can save themselves from disability by doing everything "right", but that's not how it works at all. I became disabled by cutting my leg shaving. It's all random.