Recently I explored what normal feels like to people with learning disabilities. Now I’d like to get a little closer to home and explore what normal looks like physically. For those who don’t know me personally, this post will probably make more sense if I preface it: I don’t look normal. Most days I wear a prosthetic arm on my right forearm. Some days I don’t. Either way, people tend to look at me a little differently than they would a normal thirty-something Minneapolis mama. That’s okay with me. You get used to stares and questions. They’re just part of your life. (See Fake Arm 101 for more about this)
Stares and questions are very much a part of Kevin Connolly’s life. He was born with no legs. His memoir, Double Take, chronicles his experience traveling the world taking photographs for what became The Rolling Exhibition. His photos of people staring at him are particularly poignant from my perspective, but within in the context of his book, I believe they become near-universal. Connolly takes his experience of difference and puts it right beside yours. Have you ever been the tallest/shortest, biggest/smallest, the most whatever in a group? Then you get it. That’s what I got from his book, at least. There was an inclusivity in his story that isn’t always present when the subject has anything to do with disability. Autobiography of a Face by Lucy Grealy is another memoir that did this for me. I would recommend these books to anyone looking for a good memoir.
I recently finished a memoir of quite another sort. Harriet McBryde Johnson, author of a teen novel I highly recommend: Accidents of Nature, tells her life story in Too Late to Die Young. She has a neuromuscular diease that confines her to a wheelchair and keeps her dependent upon others for assistance with bathing, dressing, etc. Her memoir has some very interesting elements, particularly her interactions with animal rights activist Peter Singer, but she never manages to make her experience universal. She never seemed to be trying to say ‘I’m not so different from you.’ Rather her message was more ‘I’m different from you, and that’s okay.’ Both are good messages. Both are messages that need to be heard. But, to be honest, if there’s a message that I’ve been trying to get out there it is in the Not-So-Different camp.
Johnson writes, “For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasure other people enjoy, and pleasures peculiarly our own. We have something the world needs.”
What is it that the world needs from someone like Johnson, Connolly, Grealy, or myself? That answer does not come easily to me. For Johnson, it is merely that such people exist, the we accomodate our differences, that we live within a world that does not always know what to do with difference that is so important. ”Living our lives openly and without shame is a revolutionary act.”
I don’t feel like a revolutionary. At least not most of the time. But there are moments. Moments when people forget how different I am. Or when they get over their surprise at my actual abilities. Or when they don’t stumble over the words hand or arm in my presence. Those are the moments when I feel like I’ve accomplished something important just by existing. I guess I differ from Johnson in that I believe that’s what everyone is doing. We’re all revolutionaries.