October 25, 2010

“The reconstruction of a useable past can contribute to the building of an accessible future.”

It was pouring rain in Sam Francisco on Sunday morning and still pouring when K. and I came above ground at the downtown Berkeley station. Somehow, though the Civic Center elevator had been out of service again and we had to troop down grimy Market St. far too early on a Sunday (for me, that is any time before 10am) we made it to the UC Berkeley Alumni House on time. It was warm there and dry and everything smelled of moist eucalyptus and pastries. I parked my motorized scooter behind several electric wheelchairs. The door to the courtyard behind us was open and with the sound of rain in the background, K. and I settled in to the last row as Georgina Kleege began introducing the readers.

UCB faculty, San Francisco State University professors and many friends had gathered to read from Paul Longmore’s* writings—and in some cases, to retell his stories and jokes—as a memorial. It was a wonderful event, filled with wisdom and humor and I wished it could have gone on longer.

A few days ago, I was talking with a friend about coming to my first Write To Connect workshop, which is this Friday. C. and I have not known each other all that long and she said to me, kind of nervously, “Ok, I’ll come, but as long as you know I am not the type to write a disability memoir…..” I laughed and told her that that is exactly the sort of thing I would NOT want her to do, because I know it is not her style. I guessed she had the being-inspiring phobia. But I told her that some of the students would be interested in writing autobiography and I was very much looking forward to working with them too.

As I listened to the readers at Paul’s Berkeley memorial, his words gave me reassurance, helped me fortify my thoughts around C.’s concern and my feelings about it. In The Disability History Project Lectures (1991), Paul wrote that “part of the problem of being disabled in this society is you don’t get much encouragement to honestly come to grips with, grapple with and explore your experiences in your life as a disabled person. You are supposed to incarnate the myth.”

By “myth” Paul meant the gracious and charming façade of what he calls “the uncomplaining overcomer”. He described himself as a young man, spending so many valuable moments of his time trying to choreograph the small interactions he would have with fleeting people, like cashiers, clerks, etc. He would try to be very poised in his demeanor, very witty—to overcompensate for the phsycial fact of his disability. And even when he realized this was absurd, he still kept up the effort.

In the Disability History Project, he also said,

Inspiration—we all fight being inspiring for good reason. If I am much more inspiring, I am going to come down with a secondary disability—diabetes. It is just so cloying and saccharine. But the fact of the matter is also, that disabled people like everybody else, need role models and heroes, which is not to say we should write politically correct her stories.

And he added an example of a woman who is a hero to him, a friend and mother of four, who lives an everyday life with tenacity and honesty. He relied on her for her matter-of-fact advice about any number of things, like his ongoing battle with the Social Security Administration.** His point was, seemingly, that being heroic needn’t be a grandiose or instructive story, but that we need disability stories, whatever form they take.

In Why I Burned My Book and Other Essays, Paul wrote, “The reconstruction of a useable past can contribute to the building of an accessible future.”

I want to use Write To Connect as a space where people can shape their pasts—and their present—into something useable. And, whether that pertains to artistic beauty, strong syntax for civil rights, precise words for personal views—that use is up to each student to discover and define for themselves. I think that the act of writing together, in small groups, as a community, is “inspiring”, in that it refreshes the spirit and leads to individual self-determination.

Thank you for your words Paul, and thanks to those who hosted the memorials this weekend.



*If you are not familiar with Paul Longmore, core founder of disability studies and a renowned disabled historian, check out his books online and ask me about him at Write To connect. I can point you to some resources online. Paul died unexpectedly in August.

**Due to a monumental public demonstration on his part, Paul chnaged a Social Security Administration policy that threatened to deprive him of government benefits for his in-home assistance and his ventilator. Because he would receive modest royalties from an academic book he published, SSA was going to pull his benefits. Then, just before he died, he had to turn down a grant to write another book, because he found out that the Longmore Amendment he brought about did not extend to grants. If you are interested in this issue, please ask me in class. A petition is circulating.