Mis-Abling and The Disability Closet

This year, when I sat down and thought about what I’m really, enduringly thankful for, I noticed a pattern. On top of the more universal things – my family, my friends, and above all, my cat Cedric (name changed to protect purr-vacy) – there were some items on the list that are probably not all that common at all.

It made me think of a different kind of closet, one that I’m happy to be in most of the time, but one which carries its own stigma. It’s one I haven’t really written about before – until now.

I’m thankful that my disability is invisible.

It wasn’t always like this. I used to wear bulky braces (in fact, I have support braces for most of my joints, including my fingers. Tape worked better, though, as measured by the mean length of xbox playing). I used to sit down every half block or so to rest. I used to wake up in pain; I used to go to sleep in pain. But because of a combination of luck and persistence, I ended up with a treatment that gave me my youth back.

It’s not a cure. It’s never going to be a cure. I had surgery a few years ago to correct part of the problem, and waking up to hear that it was to dangerous to fix was, if not the most disappointing news of my life, certainly in the top five. But I’m still thankful to no longer be that guy struggling up the stairs like an arthritic centegenarian.

I’m thankful that even though I wake up every morning in some level of pain, that I can manage it to the point where I can do the things I want to do, like go to the gym. Even though I’m looking down the barrel at a lifetime of neuropathy, I’m thankful that Obamacare is safe and that one day, when I’m out of school, I’ll be able to access the medication that I need.

I was going somewhere with this. Oh right! The closet.

Now my disability is completely invisible (previously, it was only mostly so – and you’d be amazed how many people will make up some non-disability-related reason why you’re wearing knee braces. “Oh, do you snowboard?” was my favorite), but still there. It’s an inescapable sword of Damocles hanging above my head, always a few hours after a missed dose away from crashing down, but at least I have the choice of whether and to whom I point it out.

It’s a result of several layers of privilege that I get to spend most of my time in this able-bodied closet. I have the cultural capital to argue with doctors. One of my problems is a congenital malformation in my neck that impeded swallowing. So I told one doctor when I was seventeen that it hurt to eat. On the apparent theory that thin, teenage girls have only psychological problems, she promptly diagnosed me with an eating disorder.

Four years later, when the pain became so severe I was briefly hospitalized for it, another doctor floated the theory that my pain was caused by “anxiety.” Two years after that, after I’d learned enough anatomy to be able to say this, I told my otolaryngologist that “It feels like my medial pharyngeal muscle is rubbing against something when I swallow.” I had a diagnosis literally within the week.

I have the extreme economic privilege to spend a shitload of time at the hospital, accessing different doctors in different specialties. Without insurance, I’d be, at minimum, eighty grand in the hole right now (and that’s not counting my failed surgery referenced above; I don’t even know what that would have cost). Most of the time I was really sick, I was in school, and I did not have to worry about losing my job. I’ve always had reliable access to birth control, so I don’t have a kid to support.

I once disclosed it to an employer, and was fired as a result. Whoo hoo! This semester, I disclosed to a classmate (in the context of expressing frustration with the delay in getting disability accommodations) and she laughed. She stated that it’s not a disability and that there’s nothing wrong with me. She said this in front of mutual friends. Things have never really recovered between us.

I’ve had classmates say some asinine or bizarre things to me about my gender presentation and my sexuality before. One asked me in front of a group whether I wore men’s underwear. Another offered me a makeover, on the condition I grow my hair out (“Then you’ll have options. You can wear it up OR down!”).

Stil, those don’t bother me as much as the person dismissing the years of pain I’ve been through because they personally can’t see anything wrong with me. I don’t still get angry about being called a ‘muff diver’ the way I do when I think about being told by my former employer that it’s “not normal for someone your age to need medication to walk. You realize you’re not normal, right?”

I’m not ashamed of my disability – I’m proud of who I’ve become as a result – but I’ve learned a hard lesson about stigma from people who mis-abled* me and later discovered the truth.

So it’s a weirdly comfortable closet I’m in, as someone able to pass as able-bodied. I may get the side-eye from strangers when I park in a disabled space. I also get random conversations with other closeted disabled people that seemingly come out of nowhere; suddenly I’ll realize I just met you, and this is crazy, but you’re in pain too, so commiserate with me.

Sometimes I think this closet must have windows.

*A neologism by analogy with misgendedered, referring to the ablist assumption of able-bodied-ness in others.