Fit, Prepared, and Able to Survive

Harriet McBryde Johnson is a lawyer, a disability rights activist, and the author of Too Late to Die Young: Nearly True Tales from a Life. Johnson was born with a congenital neuromuscular disease and–as a disability advocate–has disrupted a National Democratic convention,  protested against the Jerry Lewis muscular dystrophy telethon for several years, and soundly challenged the Princeton philosopher Peter Singer (known for his work on animal rights and, more infamously, on the “mercy killing” of severely disabled infants).

 In an essay in a recent New York Times Magazine, Wheelchair Unbound, Johnson describes her reaction to viewing an exhibit at the United States Holocaust Memorial Museum in Washington, “Deadly Medicine: Creating the Master Race.”

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. ………..

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. ………..

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 “fit.” 

In Too Late to Die Young: Nearly True Tales from a Life, Johnson calls on kids with disabilities” to be “prepared to survive.” As the parent of a disabled child, I hope I’m able to teach Charlie to do just that, and to self-advocate for himself as Harriet McBryde Johnson does.