The Others: An Introduction to Disabilities
I don’t want to give you the wrong impression about disabilities here. There are countless variations and I only know about a specific subcategory. Spinal Muscular Atrophy type two, which is a form of Muscular Dystrophy, or, in other words, a really screwed up thing to ask a five year old to try to pronounce, let alone explain to playground friends.
Interesting aside. I offered to let a class of second graders write me anonymous questions about my disability for me to answer aloud. Over fifty percent of the cards asked, “so, how do you ski?” Because … Colorado.
But that’s sort of the point. People have questions about disabled people and there’s really no good way of asking. Parents constantly tell their kids not to stare or ask questions, asserting that it’s rude. It’s not rude, and pointedly more uncomfortable when you become that forbidden thing to look at or talk to. Also, just so you know, your kid is staring because I’m making faces when your back is turned. Yes, I’m that guy.
Don’t get me wrong. This attitude derives largely from uptight “witty people” in the disabled community. Example: stranger asks, “So … what’s wrong with you?” Disabled man responds, with cocked head and a half smirk, “Nothing at all. What’s wrong with you?” Now, while asking a disabled person what’s wrong with them is probably the single most absurd way to try to avoid being awkward, to that person with said disability … don’t be an ass. There’s something wrong with me. My legs don’t work and, believe me, it’s not for lack of sincere effort. You know what the person meant. Don’t perpetuate the social anxiety that generally accompanies my everyday conversations.
The real problem with being disabled is the stigma surrounding it. Also, stairs. As a man in a wheelchair that places a high value on independence: fuck stairs. Walking people don’t even like stairs. Half the time, I have to fight them for the elevator that’s only there because people like me fought to have them installed. You’re welcome.
I started writing this article at 8:30 pm on a Wednesday because television sucks. Seriously. No, I’m writing this because I’m an unusually lucky person in an impossibly fortunate situation, but that shouldn’t be the reason I made it this far. It didn’t occur to me until a few months ago when I visited the doctor that the depth of the problem struck me.
Every six months (or in my case, hating visiting the doctor like most rational humans, 1.5 years), I visit a clinic, or as I think of it, doctor speed dating. Basically, you only have a couple hours to meet with all of the state specialists that can help you with your disability. So a respiratory therapist jumps in the room, sits in front of you, offers the latest and greatest oxygen machine, orders one, shakes your hand and leaves. Ten minutes, tops. Next is the wheelchair repair expert. They decide it’s time to upgrade to the new hotness and get the one year long process of getting a new wheelchair started. Ten more minutes. And, next!
That was when I disrupted the normal cycle. They asked what I was up to. Naturally, I offered up that I was a Software Engineer. The title is just a title, I hold no illusions, but it was new, and it was shiny, and I was oh so proud of it. I sat there and, about halfway through the conversation, I suddenly became aware of the off stares aimed at me. When I asked, they explained something that, honestly, frightened me more than encouraged me.
They didn’t immediately believe me because the notion of someone with my specific condition doing the things I’m doing was unheard of, even to a room full of experts that deal with people like me all day. Living independently, without government assistance and with a full time job? On the one hand, I had that inner voice that boasted, “Yeah, well, you really have no idea how quietly stubborn I am.” I was giddy and gave myself an internal pat on the back.
On the other hand, it was terrifyingly unsurprising. There are countless factors that are blatant obstacles in a disabled life, but most of these obstacles are invisible to the general public. That was when I decided that I should do something to bring attention to the problem. Why? Because I can, although, admittedly, I cringe a bit at the notion of a software guy being a public voice for disabled people. That said, I have a plan and this is where it starts.
Over the next few months, I will be tackling something about being disabled, good or bad. One topic per article. The goal isn’t to bring pity or start some form of radical social change. Even if I could, I would really rather someone else lead the charge. My goal is simply to bring attention. People need to understand that a problem exists before they can fix it.