WHAT DOCTORS DON'T UNDERSTAND ABOUT DISABILITY.

AuthorErvin, Mike

Every now and then, I post help-wanted ads to hire a new person to join my "pit crew." That's my trying-to-be-funny name for the crew of people I've hired to come into my home and assist me in doing the things everyone does every day, such as getting out of bed and dressed or fixing meals. I have a disability and use a motorized wheelchair, so I need help with these routine activities.

Sometimes I resort to recruiting via Craigslist posts, and when I do, I'm prompted to choose a job category for my ad. You'd think I'd place the ad in the health care category, where it might catch the eye of someone trained as a certified nursing assistant (CNA). But I don't choose health care--because that's exactly what I'm afraid might happen. My general opinion of CNAs is that, while they're nice people and all, their perspectives of the job are sullied rather than improved by their medical backgrounds. I've noticed from my own experience that CNAs tend to think of themselves as caretakers instead of personal assistants, viewing disabled people who need their help as passive and lacking agency over our daily decisions. They think we need someone with medical expertise to supervise us and guide us through the day.

But that's not what I'm looking for at all. It doesn't take a nurse to fix my breakfast. You don't need medical training to know how to put my pants on me. And I certainly don't need a supervisor; I'm way too old for that. Like everybody else, I want to determine the trajectory of my day for myself. Thus I place my Craigslist ads in the et cetera category. I assume that people looking for work in this category are more improvisational, more free and easygoing. I'm looking for workers who are et cetera types. Though they usually have no idea what to expect from this job, they're up for accompanying me on my adventure. I much prefer that outlook to people who might have rigid expectations of what I'm supposed to be like.

Every year, I do a gig where I, along with other disabled folks, talk to first-year medical students at Northwestern University Feinberg School of Medicine as part of their curriculum. Prospective doctors ask us questions about how we navigate our days. I'm happy to take part in this because I think that anything that gives doctors a better understanding of disabled folks and how we operate is well worth a shot. Why? Because I also think that some of the deepest and most dangerous ignorance of, and disregard for, disabled folks is...

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