When “Small” Disabilities Add Up
How many “minor health aggravations” do you need before you become an official Person with Disabilities?
I’ve been identifying as such for a few years, but I always feel like a total impostor. Not because of the reactions of other PWD: everyone I’ve met in the disability justice community has been amazing about inclusion, and folks within the community tend to be aware of invisible disabilities. But I still wonder to myself: do they assume I’m sicker than I am? Do I really have a right to be here?
Health care is so broken in this country, but so is culture. I’m only now, in my early thirties, starting to realize that there are a number of health problems I have that I shouldn’t “just accept.” At first, it was the looming spectre of the pre-existing condition (I can’t even bring myself to acknowledge that said spectre is back, I just can’t). Then it was the feeling of “hey, I’ve been ‘fine’ with this for years, it’s no big deal.”
My turning point was an issue with energy that sometimes put me in the position of sleeping 14 hours at night, then needing a 4-hour nap in the middle of the day. In other words, I wasn’t able to convince myself to seek medical help until I reached the point of a serious threat to my function, something “disabling” enough to affect my work hours. Once I hit that point, I realized that I couldn’t just keep “dealing with it.”
Of course, I was skeptical that the medical establishment would actually provide much help. I wasn’t able to get an appointment with a primary care provider until late June, as the other provider I was trying to see cancelled multiple times since January. In the meantime, I experimented with my own remedies to some of my problems. When I did see a doctor, I was able to learn about a vitamin deficiency, and I consider myself lucky that I identified at least one cause of my energy issues, but none of the medical professionals I spoke to about them seemed to care much, or consider solving them a priority. I’m starting to get angry about that.
But what if I’d allowed myself that anger sooner? What if I’d asked for support and advice from the disability justice community years ago, when my problems were still relatively “minor?” I can’t help but feel that my impostor syndrome has held me back in life, and I wonder how many others are in this position–not due to community rejection, but due to the strong mainstream bootstrapping message and how it can worm its way into your brain.
We have a problem with healthcare in this country, only made more urgent by the possibility of rollbacks or defunding around the ACA, but we also have a problem with perception, and the boundary between “able” and “disabled.” We need to start recognizing that everyone has different health needs, and that disability justice is a movement for all of us, not just a select few. We need to apply the concepts of care and community throughout society, not just in small disability justice circles. And we need to stop accepting that a problem not be treated until it becomes so severe that we can’t ignore it.