--from NPR..org
Paul Longmore, who died on Monday, was one of the nation's leading scholars of disability history. But he first got national attention for an unscholarly act: He burned a copy of his first book.
That was back in 1988 and Longmore, then 42 and a visiting scholar at Stanford University, was trying to make a point about the bizarre system of work disincentives that keep many disabled people from taking jobs and, in his case, threatened not only his ability to work, but to live, too.
Longmore wrote — and this is how he wrote his first book, The Invention of George Washington — by holding a pen in his mouth, and using it to punch the keyboard. He'd contracted polio when he was 7, and was unable to use his hands. He also breathed with a ventilator at night and part of the day.
That ventilator was paid for with state and federal funding. California's Medicaid program, called Medi-Cal, also paid for an aide to come in several hours a week to help him keep up his apartment. These things helped him get through graduate school, write his book and start teaching.
But federal law puts a limit on how much a person with a disability can earn and still get this kind of assistance. In Longmore's case, if he made too much in royalties from his book — and it got good reviews — he faced losing the government money he depended upon. He hoped to make just $10,000 off the book, but that was enough for him to miss out, he figured, on $20,000 in yearly benefits.
Social Security later changed the rules on royalties, in something that is now called the Longmore Amendment. But other disincentives still exist, which contribute to the high unemployment rate of people with disabilities.
The current unemployment rate for people with disabilities is 16.1 percent, compared to 9.5 percent for the population as a whole. And that just counts people with disabilities who are looking for work.
Longmore went on to a distinguished career, joining the faculty of San Francisco State University in 1992. He wrote about disability history before disability studies became a popular discipline on college campuses.
His book Why I Burned My Book and Other Essays on Disability History challenged popular views of assisted suicide, uncovered the unknown history of an early disability protest movement during the Great Depression and looked at the stereotypes of disability found on television and in movies. (Longmore loved film and would have made a fine movie critic.)
Most of all, Longmore taught that people with disabilities, themselves, had changed the way the world defined what it means to have a disability. "Previously, disability was defined as a set of limitations in the abilities of people with disabilities to function in society because of some pathology in us," Longmore said last month, at a San Francisco celebration of the 20th anniversary of the passage of the Americans with Disabilities Act. "The disability rights movement redefined disability as a problem mainly out there in society—not just in our bodies and minds but in society."
It wasn't the person with a disability who needed to overcome that disability, Longmore said. It was society that needed repair — whether it meant putting curb cuts at the end of the block, so someone like Longmore could get around in his power wheelchair, or changing Social Security laws so he could publish books and not lose the assistance that assured his accomplishment and independence.
Longmore died of natural causes. He was 64.
Dear Paul,
Thanks for that beautiful day on the SFSU campus, deserted for the summer, just us rambling about about telethons, pastries, garishly painted ramps. I'll keep working on my jokes.
