The trouble with Jerry

I was reading the letter from the Academy Awards Committee to Disability Rights Advocates this morning and reflecting on the trouble with Jerry.

The trouble with Jerry, I think, is that he straddles generations of change and holds the uncomfortable position of doing better than our parents and not as well as their children.

Not unlike Frederick Douglass and Susan B. Anthony. For years they were friends and colleagues, a former male slave and a white woman, both disenfranchised, both unable to vote or own property. They worked together on full citizenship through constitutional amendment.

Until the day that Douglass, seeing the end of the Civil War and the passage of the 14th Amendment as an opportunity that would never again come, backed the Fifteenth Amendment. For which he is a hero. But he supported the final amendment against the advice and will of his long time political partner and friend, Anthony, who worked on this amendment with him but withdrew her support. Because, in its final wording, the fifteenth guaranteed the right to black men. And not a single woman. Douglass had lobbied with Anthony for that amendment to include women, but gave up. He knew that it would not pass if women were included in this expansion of the right to vote. He turned his back on women in order to make one milestone in the fight. These lifelong friends never spoke again.

I have often wondered about this historical moment, from the point of view of the people involved. Was Douglass right? Was it necessary? Would lack of compromise then have set the whole cause back? What if the fifteenth amendment had included language protecting women and not passed? Was Susan right to stick by her belief that rights cannot be gained incrementally? Or was her role more important-- was her vigorous campaigning and militant opposition part of what pushed the struggle forward?

I never wondered if Douglass was a hero-- he was.

Jerry is out of step with this newer generation of parent, caregiver and adult with disabilities who grew up with ADA. Most of use have lived with a different reality than his generation: no matter what anyone thinks about people with disabilities, they all have legally protected rights.

Jerry spoke to, and often for, a generation of adults who came out of world war two horrified by the genocide but still harboring sympathy with eugenics. He spoke to a generation of adults who never built accessible ramps so that people with disabilities could access public institutions, but instead built public institutions to prevent people with disabilities from living in the community. He spoke to a generation that heard things like "there is no hope" and "give the child up." To a generation who had little sympathy for people with disabilities, developing sympathy, empathy and compassion was a powerful first step that allowed them to consider throwing open the doors of state hospitals and keeping children with disabilities home. And to look for cures.

Cure is such a common word now, cure for AIDS, cure for autism, cure for lymphoma, run for the cure. When Jerry began his work it was not so. If you went around with your pledge sheet and asked for triathalon sponsors, people would have been puzzled- why? Jerry made us see how shameful that was.

Jerry claimed kids-- Jerry's Kids-- with a disability that the medical community disclaimed and described as terminal, invalid and disabled. In response he imagined Jerry's Kids? That is courage.

Douglass was a hero, even with the whole 15th Amendment-not-including-women thing. Mark Twain was an incredible voice against racism, even though he used the N word. Jefferson expanded civil rights exponentially, even though he was a slave holder. I am a good enough mom most of the time, even though I have my moments of fatigue, my secret wish for her to be cured, to be other, to be like us-- not disabled.

Jerry Lewis did not invent the disabling language of his time, or the view of ability and disability in the post war era. Jerry urged the able-bodied world to feel remorse and shame toward themselves and sympathy toward people with disabilities. It only feels weird now because we are so far from that time when people responded to disability with revulsion, aversion and avoidance. Because of the sea change in our concept of ability, today we (and I mean those of us who are typical, majority or non-disabled) can feel the many things that come with friendship with people of all abilities. Rather than pitty for the stranger, we feel love and hope for the relative and friend.

In his own best way, and his way accomplished a great deal.

Thanks Jerry. And, by the way, please don't heap sympathy on my kid. She may even see a cure. Until then, she is just right the way she is. It is the only way she can be.