When this picture was taken, I had barely begun adulthood and I thought my life was over. I was twenty-one. Many of my health conditions were undiagnosed or untreated. I was sick. I was tired. I wanted to think of myself as strong, but I was just a kid who was lost and confused because my body was breaking. I felt isolated from my friends, who couldn’t understand what I was going through. I couldn’t take care of myself very well. I was so tired that getting out of bed took a huge effort. If I wanted to go somewhere farther than my apartment, I had to use a power chair.
I have never felt less sexy than when I was in my wheelchair.
My chair is not sexy. It is upholstered in a color I can only describe as “medical gray,” a color that says “I have zero personality.” It is a color that says “I am functional and not sexy, because why on earth would I need to be sexy?” The plastic of the chair is red, but not a “fuck me” red. It is not a red that evokes any sort of lust or hints at any secret desire. It is a “we needed to make this a customizable, so you have a choice of red or blue, isn’t that nice” red. The chair as a whole is bulky and not especially well-designed for comfort. Form, I suspect, was not a factor in its design. It is simple, but inelegant, minimalist only insofar as it has few features. It is almost purely designed for the function of getting from point A to point B, and, truthfully, not very well even for that.
Disabled sexuality is virtually erased in our society. People with disabilities are, at best, considered nonsexual, entirely lacking in sexual identity. At worst, we are seen as perverts merely for having sexual desires. And we are, above all, undesirable. The aesthetic of my power chair reflects this–why bother make something sexy when the person using it isn’t going to be having sex?
There is a difference between impairment and disability. To borrow a definition from Stacey Milbern, “impairment is the reality of what your body is able to do, and disability is what society disallows your body to do because it has an impairment.” I have a degenerative illness. Whether I am in a wheelchair or not, my body is impaired. Pain and fatigue are not perceivable by the naked eye. But once I sit in my wheelchair, my disability becomes visible and I can no longer “pass” for able-bodied. When I sit in my wheelchair, the status of my disability does not change, but the way society views me does. Suddenly I am an object of pity rather than desire. When I roll down the street, people avert their eyes.
I don’t want people to see “past” my disability. I want them to see me as a whole person, including my impairments. I have fucked someone in my wheelchair. (I have fucked a couple of someones in my wheelchair, actually, I mean, not to brag or anything.) It was physically awkward and uncomfortable, and also? incredibly hot, because I was living out this idea, that my illness is a part of who I am, deserving of love, just like the rest of me. I also tended to dress more provocatively when using my chair for a similar reason–I wanted to forcibly turn people’s eyes toward me, to demand from them the desire that I knew I deserved.
The photo at the beginning of this post is one of the oldest sexy pictures I have of myself. I took it to make a point. I wanted to confront people with their preconceptions about disability and desirability. With this picture, I wanted to do what social norms prevented me from doing, to scream, “Look at me! SEE me. Recognize me as who I am, a sexual being!”
I no longer use my powerchair. I still have it, but I am on a combination of medications that render it unnecessary, at least for the moment. I do still use a manual wheelchair in certain circumstances. I dream of the day when pushing my wheelchair is seen as a service, not a chore. Some day sleek, sexy wheelchairs will be the norm. Some day someone will worship my wheelchair, and me, in my wheelchair. When that day comes, I will sit as in a throne, and I will be powerful and broken and beautiful and whole.