Source: The New York Times
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.
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.
Today, as an adult, I am less than five feet tall. I have a curved spine. I wear huge, clunky orthopedic boots. I’m more visibly different than I’ve ever been — but I wear my glasses all the time now. My reflection doesn’t cause me to flinch. I must say, it’s nice not to collide with buildings, pedestrians, dogs and parked cars nearly as often.
The writer Elaine Scarry says in her book “On Beauty and Being Just” that beauty ignites in the viewer an urge to replicate. We wish to reproduce that which gives us aesthetic pleasure. The people I’d just met made me feel that impulse, as if I wanted to absorb who they were and recreate them as art. So, I swallowed and asked if I could do their portraits. They changed my life when they said yes.
I began by asking the collaborators about their careers and their personal lives. Portrait imagery was drawn from these conversations. I gave them a great deal of control over the images, because nearly all found it painful to be stared at, and I refused to replicate that pain. My collaborators claimed their own beauty in the process.
The deep aesthetic pleasure I feel can be explained through a single image. I first met poet, essayist and activist Eli Clare just before his gender transition. His portrait took two full years, during which I witnessed his metamorphosis. Eli’s disability is cerebral palsy, which puts muscles under continuous isometric exercise. As a result, Eli’s body is very defined, athletically “cut” in ways that are classically beautiful. In addition, Eli lives in Vermont, and is an avid hiker and cyclist. The way Eli uses his body, and the effect of his impairment gives him a grace woven of male and female ideals. Most people would never notice that a disability could be the direct cause of strength and health; yet this the magical thing about bodies — they respond to the unexpected with their own forms of poetic genius.
I’ve been lucky to work with other prominent figures in disability culture, as well as members of the L.G.B.T. community, people who share histories of imposed stigma: the graphic novelist Alison Bechdel, author of “Fun Home” and “Are You My Mother?”; the British actor Mat Fraser, star of “American Horror Story: Freak Show;” Lynn Manning, a poet, playwright and founder of Watts Village Theater; Lennard Davis, a theorist of disability studies, whose memoirs recall his life as the hearing son of deaf parents; Nomy Lamm, a musician and activist around Fat and Queer identity; the psychologist, scholar and activist Rebecca Maskos, who is working to create a more vibrant disability culture in Germany; and the dancer Alice Sheppard, who helped redefine wheelchair-based choreography.
These portraits do not ask for sympathy, or empathy, or even that viewers agree that the subjects are beautiful. I simply want viewers to daydream the life of the person before them. To stretch ourselves toward a world where all bodies are exquisite, as they flow between all possible forms of what it is to be human.
I could easily have ended up as a teaching specimen in a jar. But luck gave me a surgeon. Fiery parents gave me a life outside of an institution. Today, I teach drawing in the Medical Humanities program at Northwestern University. My first- and second-year students draw the anomalous fetus collection in the cadaver lab. Each fetus has a different developmental impairment.
I teach my students to depict the specifics of every inch of the fetal bodies, until the drawings become profound examinations of bodies stopped in time. Their final assignment is to research a contemporary person with the same condition as their chosen fetus and do a presentation on his or her life. It helps these future doctors to stop seeing the specimens as historic artifacts or tragic medical problems. It’s as if we’re back at the Mutter, but this time those fetuses are given possible present lives, going forward in time.