Society Tells Me to Celebrate My Disability. What If I Don’t Want To?
My memory of the moment, almost a decade ago, is indelible: the sight of a swimmer’s back, both sides equal—each as good and righteous as the other. An ordinary thing, and something I had never had, and still don’t have. To think of that moment is to feel torn—once again—about how I should respond to my condition: whether to own it, which would be the brave response, as well as the proper one, in many people’s eyes; or to regret it, even try to conceal it, which is my natural response.
I have a form of cerebral palsy called hemiplegia, which affects one side of the body. The word has two parts: hemi, meaning “half,” and plegia, connoting stroke or paralysis. I have had a “half stroke,” but I prefer the romance of my high-school Greek teacher’s translation: I was, as he put it, struck on one side. Plus, it’s a more accurate description of what happened to me. At birth, the forceps used to pull me out of the womb pierced my baby-soft skull and damaged my cerebral motor cortex. On my left temple is a tiny scar left by the forceps and shaped, rather unfortunately, I’ve always thought, like an upside-down cross—the anti-Christ symbol.
I look, I’m told, basically normal. I am not in a wheelchair. I have good control of my limbs. I write and I paint. I can do most everyday tasks. Although my symptoms are typical—muscular tightness, limited movement ability, poor muscle development—they are mild. For this reason, everyone calls me lucky. And it’s true—compared with other kids in the waiting room of the cerebral-palsy ward, I was lucky, extremely lucky. But still, I never asked to be in that waiting room. I did not look like those kids inside the hospital—would balk at being classed with them, even—but my body didn’t fit in outside the hospital either. Doctors, friends, parents—a platoon of people who have never experienced what I have—commend me on my normalness. This always makes me feel accomplished, until I realize that what they really mean is: Normal, considering …
When I was a child, my symptoms were more pronounced
