by Harriet McBryde Johnson
April 23, 2006 - New York Times Magazine - I'm at the United States Holocaust Memorial Museum in Washington, touring an exhibition:
"Deadly Medicine: Creating the Master Race." Tomorrow evening I will be interviewed onstage by a museum official. In a sense, that will make me a temporary display, an object of interpretation, a body in a wheelchair, a body so pared down and twisted up by a genetic neuromuscular disability that it doesn't need a nearby Nazi to get a reaction. In another sense, I will be an interpreter, talking from experience as a disability rights lawyer and activist.
The exhibit tells of a eugenics movement that sought to apply principles from Darwin and animal husbandry to humans. In Germany, it proceeded step by step from voluntary
"healthy baby" campaigns to forced sterilization and the murder of some 200,000 disabled children and adults.
Looking at the photos of doomed children, I see my old crowd. They could be us. In
"special" schools and camps for children with physical and mental disabilities, we grew up knowing we were a category of person that the world did not want. Most of us had a story of some doctor advising our parents to put us away or to let us die. We owed our survival to parents who had irrationally bonded with us, who held old-fashioned notions of right and wrong. We knew we were lucky and hoped our luck would hold. To increase the odds, we tended to be charming. We developed thick skins.
My skin is thick enough now to let me wind through the exhibit without weeping, almost without trembling. I roll onto the tile floor meant to resemble those in the gas chambers that the Nazis designed for the
"humane" killing of disabled patients. I see a photo of a girl who was once held dear by someone who put a bow in her hair but could not protect her.
Then I see the wheelchair. It's similar to other prewar wheelchairs I've seen, but there's something unusual about the frame. Is this a tilting mechanism? A fancy suspension system? Looks like fine German engineering. I like vintage wheelchairs. An obsolete Everest & Jennings drive belt hangs in my office as a bit of nostalgia, like an old wagon wheel in a barbecue shack. I have an urge to jostle the chair, to see what that frame does. The sign mentions a German institution. So, no single owner. But even in institutions, people manage to bond with chairs. A state-owned chair may be occupied by the same person every day, parked beside that person's bed at night. Maybe the chair was used by someone with cerebral palsy until he died, then someone with a stroke until he died, and on down the line, until... until they all died?
The people who used this wood-and-metal survivor probably loved it, liked to move about even as they were sucked into the nightmare. The nightmare began when the state removed them from their families, concentrated them in institutions. The same state provided them with beautifully engineered chairs and then killed them for eating up the resources of the
I pull myself away and try to absorb the rest of the exhibit. It tells how the eugenics dragnet widened, of the way concentration strategies, gas-chamber technology and sterilization techniques first designed for disabled people were applied against whole populations defined as genetically undesirable.
By the time I roll onto the stage the next night, I've thought a lot about there and here, then and now. When the first question comes, I tell them about my fascination with the wheelchair, and somehow it sounds funny, and laughter fills the room. We shuttle between the tragedy of Germany then to the comedy of here now, from the horror of bureaucratic killing to a funny confession that I, too, tend to stare at disabled people on the street. Before I know it, I'm giving them a real show.
What has come over me? Part of it is surely the tendency to compartmentalize. But there's more. In this room, people with disabilities in thrilling variety make me feel at home. It's like the disability ghetto of my childhood, but so much better. That was a community of exclusion, created by nondisabled people who considered us unfit. This is a community of inclusion. Here people, disabled and not, are gathered by choice.
I haven't forgotten that two million people remain in U.S. disability institutions, that some disabled children still cannot attend mainstream schools, that too many of us live in poverty. But I can't hold onto anger and sorrow in this room. It is too full of life. Behind the laughs I keep getting, I feel a shared sense of possibility, a drive for a world that will embrace both the fit and the unfit and hold them so dear that the categories die.
Harriet McBryde Johnson is the author of the memoir
"Too Late to Die Young" and the young-adult novel
"Accidents of Nature," to be published by Henry Holt next month.