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.

Growing up, I’d seen plenty of medical illustrations and freak show posters. The only images of the contemporary disabled body I’d ever seen were by photographers who used disabled subjects as avatars of psychological disturbance, such as found in the work of Joel-Peter Witkin. Creatures of suffering and sin. Monster imagery that taught me that I was a monster. I never saw work that depicted the beauty of disabled people, unless it was a trite and sappy form of beauty. (God preserve me from Inspiring Monuments to the Human Spirit.) With this new group, I was for the first time seeing disabled bodies as unexpected and charming and exciting. Each one stretched the boundaries of what it meant to be human. They made the world big enough to include me.