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.”
Over the past five months, my thoughts on access have shifted to such a degree that some friends wonder if I might be lying about how I experience the world.
Until this January, I never asked for access and I didn’t identify as Deaf or HoH. When I did question the way I hear, I often dismissed my own concerns as lying to myself or being dramatic. It’s hard to know, after all, how you hear relative to others. I frequently make “silly mistakes” in interpreting another person’s words, and these mistakes have always been an embarrassment. I’ve always hated phones. I do a lot of “filling in” that I don’t really think about to get the full meaning of a sentence, and I hadn’t really noticed how that differs from others’ experiences.
It wasn’t until a conference in January that I considered asking for PSE (ASL signs in English word order, basically) interpretation. I felt like such a fraud asking, and every other word/sign in my request was an apology. Even as witnessed how much of a difference it made for my ability to understand without strain and frustration, I felt guilty.
One interpreter, though, said something that resonated with me. He said that it doesn’t matter what your disability is, or even whether you have one. You don’t need a diagnosis. If interpreters give you greater access, and improve your experience, you have a right to request them.
I can’t say that my feelings on the issue have magically reversed in five months. I still ask myself if my hearing issues are “real,” or “enough” to ask for help. I suspect I have an auditory processing disorder, and I feel fraudulent when I identify as HoH as a shorthand. I don’t want to minimize anyone’s Deaf identity by using terms that imply a more difficult experience than I have. But I have been learning to ask for access, to request interpreters without fretting over the cost to event organizers and to ask for friends to repeat themselves when I don’t understand. I’ve also been attending Deaf events whenever I can, to surround myself with people who don’t see ASL as a “language of the disabled.”
One of the hardest things I’ve had to do, but one of the most important I think to fighting ableist attitudes, is to demand access and not accept excuses. When an organizer says “no,” “it costs too much,” or “we can’t find interpreters,” I’m training myself to challenge that attitude and confront organizers about their hypocrisy as social justice activists. I’m learning to stop myself from saying “it’s okay, I understand, I can hear enough to follow” and to instead explain that my access is limited and I’m getting less out of the event I paid for than other attendees. Who knows what effect these protests will have in the future, but my hope is that they will raise at least some awareness.
This post is for the Blogging Against Disablism Day 2012 event. Follow the link to read all the posts.