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.
Transcript of Paul Longmore Speech
SF ADA Anniversary Celebration July 26, 2010
Ref: http://www.youtube.com/watch?v=2O6wQo...
Jessie Lorenz (of ILRCSF): Thank you so much Paul. We've got a lot of folks in our audience . . . (section of clip ends abruptly)
Paul Longmore: First, I want to acknowledge that Neil Marcus' partner in that performance earlier was John Kelly, who came all the way from Boston to be with us.]
So, Jessie asked me to talk about the history of the Disability Rights movement. You want to hear about your history?
(audience - Yeah!)
It's a semester long course, so we're going to be here for a while.
But, I'm going to try to do it in 5 minutes.
I have 3 points.
First of all, we redefined the meaning of disability. That's what the disability rights movement has accomplished.
The Americans with Disabilities Act was one piece of that re-definition. In fact, there was a quarter century of legislation at not only the federal but also the state level, redefining what disability is. What the situation and status of people with disabilities is and how to address the issues of people with disabilities. And here's what the re-definition did.
Previously, disability was defined, as a set of limitations in the ability of people with disabilities to function in society because of some kind of pathology in us.
The disability rights movement redefined disability as a problem located mainly out there in society, not just in our bodies and minds, but in society.
(Applause / Shouts)
Therefore, the solution was not so much to fix individuals, but to repair society.
So that was the first thing we accomplished, that's my first point, the disability rights movement has redefined the meaning of disability.
Secondly, subsequent to the ADA, we have been involved in its implementation. What that means is, we have been using the ADA and these other laws and policies, to build for ourselves an infrastructure of freedom and self-determination. That's what access is all about; that's what all the policies promoting employment are about, that's what anti-discrimination protections are about; that's what our movement is about, in terms of building our culture, our sense of pride, individually and collectively.
We are building an infrastructure of freedom and self-determination, not just individually, but collectively. And it's obvious that that task has involved not only the enforcement of laws like ADA, the implementation of those policies, but also its involved and continues to involve, resistance against the forces that would nullify the impact and the intent of the ADA.
And sometimes that means the courts that have misinterpreted it, so we had to get another law passed to redefine what the Congress intended. And we're having to fight things like budget cuts, such as Governor Schwarzenegger's unconscionable war on people with disabilities.
(Audience applause)
I sometimes think Eunice Shriver must be turning over in her grave.
So that's the second point. We've continued our struggle to build the infrastructure of self-determination and freedom.
Now here's the 3rd point. We are the ones who did this. This wasn't handed to us. This wasn't an act of charity. This was not something done paternalistically. We made it happen. We did it.
(Applause and Shouts)
Now I'm very glad that the state legislature has sought to recognize our leader Ed Roberts with a Day of Significance. But here's something to keep in mind. That designated day, is not just about Ed, as much as we honor him as much as we valued his leadership, this movement was not created by one person. Great leaders do not create great movements. Great movements give rise to great leaders.
(Applause and Shouts)
So, when we honor Ed Roberts, we're honoring all of us. Because no movement can exist without, in this case, *millions* of ordinary men and women asserting themselves to demand dignity and their rights. So that's what our movement is all about. That's our past, that's our present, that's our future.
Jessie has said we're here to celebrate. We're here to celebrate what we've accomplished; we're here to celebrate what we're going to accomplish.
The banners say Culture, History, Future. We're here to celebrate all of those things. All of the things that *we* have done together.
So, let's continue to celebrate.