Where All Bodies Are Exquisite


It’s 2009, and I’m in Philadelphia to deliver a talk at a conference. During a long break, I decide to visit the Mutter Museum. I teach anatomy, and the Mutter houses a collection of so-called medical curiosities. I examine the wall of skulls, the cases full of skeletons, and go downstairs, where preserved specimens wait for inspection.

And there I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. Some extrude a bulging sac containing a section of the cord. These balloons make the fetuses appear as if they’re about to explode. This condition is called spina bifida.

I stand in front of these tiny humans and try not to pass out. I have never seen what I looked like on the day I was born.

But this is essentially what my mother saw soon after I was born. I’m awe-struck that she didn’t flinch, didn’t institutionalize me, but kept me, fought for me, taught me how to fight. Still, I feel shock at the pure strangeness of my body, an old, old shame, and finally, sorrow. Not for myself; I feel it for my preserved kin, because their bodies were stopped in time. Historical artifacts marking a moment when medicine had nothing to offer.

Every human body is a marker in time. I was born in 1958, just as surgeons found a way to close the spina bifida lesion. At that time, the fatality rate hovered around 90 percent. It was medical practice to wait until a child reached 2 years old before doing any surgical intervention. A child that lived that long was considered strong enough to survive. But very few did. I was lucky to have had a surgeon who was trained in the newest techniques and had not bought in to the sink-or-swim bioethics. He performed the surgery immediately after my birth.

By the time I was 5, my surgeon, Dr. Lester Martin, had operated on me several dozen times. This is not unusual for children with my form of spina bifida (called myelomeningocele). It was unusual that I could walk, and did not have hydrocephalus (spinal fluid on the brain), which is standard for the condition. I did, however, have organ damage, an asymmetrical body, mobility problems and a limp. It was the beginning of a life among a chorus of strangers, all singing, What’s wrong with you? What’s wrong with you?

I coped by hiding myself inside a baggy wardrobe and a ferocious insistence that I was normal. I clung to the illusion that I was passing. I walked around without my glasses on (my myopia is impressive. So is that fact I was never run over) so that I’d never see my reflection in shop windows.

But nothing changes a disabled person’s sense of self like another disabled person. I am a painter, and in 1995, I was invited to join a group of artists, writers and performers who were building disability culture. Their work was daring, edgy, funny and dark; it rejected old tropes that defined us as pathetic, frightening and worthless. They insisted that disability was an opportunity for creativity and resistance.