Tuesday, June 16, 2015

On Being "Ugly Disabled"

This piece has been an idea in the works in my head for a long time. At first I thought I wanted to write about being professional when looking professional means suppressing parts of your disability. That's touched upon here and may be a separate piece eventually. But what I really wanted to write about was the hierarchy of disability, the way that people who can sit up straight and use a manual chair are higher up on the totem pole. It's a concept I've been trying to articulate for years and only now do I have the words, with gratitude to Corbett OToole and Naomi Ortiz for finding them first. Thank you both. 

I am not one of the "pretty disabled". I may have been close to it, once, but as I've gotten older and my disabilities have changed and multiplied, I have quickly moved away from any hope of "passing" as either non disabled or "prettily", "acceptably" disabled. (I am aware of the ironies in making that statement as a 23 year old.  My chronological age is young, but my physical body feels old.)

My primary disability, the one that people see right away, is cerebral palsy, specifically of the spastic type. This means that there is constantly a quite literal tension within my body, pulling everything into interesting shapes. I do not sit up straight and my posture becomes worse when I am tired or excited, which can lead to me sliding out of my seat or propping myself up with my arm to keep from falling completely over to the left (my weaker side). My hands are sometimes curled into fists, which I may not notice for a long while until I suddenly become aware of the spasticity in my hand or I look down and realize that I look like I'm getting ready to punch someone.  It takes a great deal of effort to push my body into "normal" shapes and often it requires a conscious effort. ("Unclench your fist now. That's it. A little more…").  Unless I am indoors in a familiar environment, or an environment that is very small (such as someone's house), I use a variety of mobility aids. My arsenal of mobility aids changes rapidly, and at the present time includes two canes, a walker with a seat, and a power wheelchair as its main staples. Other players may include a folding transport chair, a folding cane that goes with me when I travel, and forearm crutches. When I walk, my gait is "flailing", as one friend called it, or "Carapulting": a term coined by my family to describe the way I tend to fling myself up steps and through doorways.  (It is easier for me to keep my balance going fast, as opposed to going slow, or at least that's how it was explained to my mother when she asked the doctor why I walked so fast.)

Because of volume control issues relating to the muscles in my jaw, tongue, throat and diaphragm, my voice is very loud and often a bit shrill. I am usually not aware of my volume until someone tells me I am shouting, and even then I must stop and think to lower my voice. My "CP stutter" has gotten worse over the years, and though my speech is generally easy for people to understand, I tend to get "stuck" on words, sounds, and phrases. Again, this gets worse if I'm tired. Recently, I started a sentence with "Meg is" and found myself sounding like a broken record, going "Meg is Meg is Meg is" for awhile until I was able to finish the sentence. My Autistic friend Alyssa laughed and said "You would think YOU'RE the one with issues with flash photography!" (referencing an incident earlier in the night where we had to leave a restaurant because the flash photography was causing her to experience cognitive issues).  My nonexistent sense of direction and issues with perception and visual processing leads me to look incompetent or like I don't know what I'm doing a lot of the time. This does not even begin to get into my other disabilities which are less visible. 

I tell you all this not so you'll feel sorry for me, far from it. (My latest t-shirt says "Piss on Pity" and I love it.). I tell you all this so you'll know what I mean when I say I'm not "pretty" disabled, not "disability pretty". People want an image of disability that is palatable, if they have to have an image at all. Corbett OToole says in her book "Fading Scars: my queer disability history": "too many people…want our public image to be a good looking white guy with a perfect body, other than the fact that he doesn't walk, sitting in a slick expensive manual wheelchair". This is the first time I've seen this phenomenon documented any place but my own head and my conversations with other "ugly" disabled people. There's a reason that people like me aren't in the media, apart from feel good inspiration porn stories. There's a reason I quickly grew bored of Push Girls, because it was all about stereotypically pretty women sitting in pretty, sleek manual chairs. It was about the "pretty disabled" and I, quite frankly, have had enough of those stories. 

I am ugly disabled and I have no shame, only a quiet sort of longing to see my people represented. Even the early disability rights leaders were mostly pretty, because a body that doesn't move much due to polio is better than a body that moves too much due to CP. At disability conferences I seek out my people like a magnet, and it is perhaps unsurprising that I have found the most solidarity with people who rock and flap and whose speech is sometimes not fluent. People who defy typical notions of being "professional", who lie on the floor during presentations and dim the fluorescent lights. They are the ones who make me feel at home. 

I am ugly disabled and I want you to know it. If you're ugly disabled too, don't try and force your body to look pretty, because I think you're beautiful just the way you are.