by Shariq Khan, MS IV
Still a newly minted third year med student, I was mentally rehearsing the next encounter with a patient outside their room. She was a ninety-something year old black woman there for rehabilitation after a recent stroke. Visions paraded past my eyes about how much she’d seen with her own: the end of the second world war, the civil rights movement, the digital age, all the while with the contractures she’d developed from being wheelchair-bound since childhood. I imagined myself in her shoes: never having played soccer, never skipping down the street, discrimination, excluded from society and all its joys. Attempting to build a connection, I immediately presented her my sympathy. I told her that I was so sorry for what’s happened to her and that I could only imagine how rough her life has been. She shrugged it off. God had dealt her these cards, and she was grateful for the challenges she had overcome. She told me she wouldn’t change a second of it.
This spiritual perspective of disability wasn’t new to me. Some of my most cherished memories are with my aunt, who happens to have Down Syndrome. There are few people I know who radiate such pure joy as she does. I have never thought of her first as “disabled” or as her life as “tragic”, and I doubt she does either. In fact, I’ve only ever heard from my family that they wish everyone had a person with Down Syndrome in their lives. So why do I, and so many other medical providers, jump to sympathy and pity when we encounter a person with disabilities? Was this an issue with our culture and how we see disabilities? Could it be because I saw our role as physicians as “curing” “diseased” patients?
Many, if not all, of our patients are “disabled” according to medical definitions, yet only a minority would attach that label to themselves. As physicians, for better or worse, we are tasked as gatekeepers in determining who is or isn’t disabled, and how we define disability has material, cultural, and psychological consequences for the world around us. Even the term “rehabilitation” seems to be loaded with assumptions that our aim is to “fix” something broken about a person, and shuttle them back to “normal”, a perspective that many might resent.
I am entering this field because we aim to take a backseat, consciously avoiding paternalism, to achieve whatever functional goals our patients have. There is no other specialty serving a community with so much emphasis on seeing them as they see themselves, rather than solely as their disability or disease. Below I’ve prepared a chart with just a few of the models and “stories” about disability that at least some people subscribe to. None of them are correct, and all of them are correct. I hope this helps to open up our minds to a career-long conversation between ourselves as young physiatrists and the folks we aim to serve.