Paul Longmore, pioneering disability rights activist and American history scholar, died on August 9th at the age of 64. Paul was a major figure in what is now a dynamic and rapidly growing field of academic inquiry: disability studies. Paul directed the Institute on Disability at San Francisco State University. His death was very unexpected—only a month ago, he delivered a powerful speech at San Francisco City Hall for the 20th anniversary of the Americans with Disabilities (ADA) event.
On a warm, sparkly day this spring, before the grey afternoons of this particularly cold SF summer set in, I trekked out to San Francisco State and sat at a picnic table with Paul. He was wearing a professor’s blazer and white running shoes, and he was seated in his power chair. I wore my huge sunglasses and perched on my mobility scooter with the bockety paint job. With the sun out, we were feeling altogether leisurely. I had been a bit nervous and somewhat embarrassed because I had yet to get to know Paul, even though I consider myself someone who is very involved in the disability community.
The LightHouse was one of the agencies that put together the 20th anniversary celebration of the ADA event last month. Paul was a top choice to speak at the event, so I felt lucky to have an excuse to call him. My friend Amanda Hoffman, a documentary filmmaker who is making a film about blindness in the community, was a great friend of Paul’s, and she advised me to think of some corny jokes because he was a total punster. I chickened out after I dialed his number, and instead, just stuck to introducing myself as an information and referral specialist at the LightHouse. “And, on behalf of the LightHouse, I am on a committee that is planning an event for the ADA—.” He interrupted with, “I know who you are, Amber.” It turned out he had read some of my poetry online. This seemed incredibly generous to me, since I am sure Paul had hundreds of academic colleagues, anxious grad students and professionals in the disability field to keep on his radar.
While we sat basking in the sun that day, Paul asked me about my big sunglasses. I explained that I had recently become blind in my left eye and that glare, especially, made my eye more painful. He asked how that experience informed my work at the LightHouse, and in response, I told him how I love the conversations I get to have via my job—in person or over the phone—with people who are slowly transforming, moving from vision loss to an understanding of what it means to be new to blindness. But, I said, it is sometimes a confusing dialogue, in my head and with LightHouse clients and visitors. Like many of the LightHouse visitors, there are still many medical steps I must take on my journey with partial sight and a single day contains conflicting emotions—frustration over eye aches one moment and total excitement over the newest software for blind computer users in another. Paul responded with a long treatise on illness versus disability, on suffering and self-sufficiency. He expressed to me that he did not believe that the search for a cure needs to contradict the fight for disability rights. He also told me that it is not a paradox to acknowledge discomfort and at the same time foster disability pride. His thoughts were immensely helpful that day.
Paul was a methodical scholar. He explained that when he wrote a book, he carefully researched and polished a chapter before moving on to the next. And he did this with voice recognition software or sometimes with a pen in his mouth to tap the keys (after childhood polio, Paul no longer had the use of his hands). This is likely how he composed his first book—a respected biography of George Washington. And then he set it on fire. Paul became famous as an activist for burning his book in front of the San Francisco federal building in 1988—as a protest of the Social Security Administration. The meager royalties he could expect from an academic text were enough to threaten the SSA benefits Paul depended on his for his medical care, in particular, his ventilator.
In early July, Paul gave a lecture at the Smith-Kettlewell Eye Research Institute (SKI). His topic was on the way blind activists were the early forebears of the disability rights movement. Ever the consummate historian, he told a fascinating story at SKI that day about a little-known figure: Abram Courtney. Courtney was an itinerant blind peddler in 1835. He authored and self-published a pamphlet that he then began distributing while he traversed the country as a traveling salesman. His goal was to disprove the idea that the blind could not work and to inform people, in a friendly and anecdotal manner, about the blind via his writings. This was quite radical for 1835. He goes on to explain how one of the largest blindness organizations in the country was founded—long before ideas of equal rights or access were in place.
On July 26th, Paul made a rousing final speech at the ADA event. He said, “Great leaders do not create great movements. Great movements give rise to great leaders,” and, “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.” Read the entire transcript or watch the video from this event at the Independent Living Resource Center’s blog: http://www.itsnormal.org/2010/08/for-paul-longmore-were-not-done-yet.html.
As the crowd was trickling out of the ADA event, I thanked Paul and we agreed to get coffee soon, to take up our conversation where we had left off. I wanted to hear more about Abram, maybe work it into a poem about the LightHouse’s history as a broom factory. I wanted to ask Paul what new trouble he was going to get into, what else he would set on fire. I promised I would have some jokes for him the next time.
A public service for Paul will be held October 23 at 2 p.m. at the Seven Hills Conference Center at San Francisco State. A reception will follow at 3 p.m.
Download this podcast to listen to Paul Longmore’s SKI talk on radical blind figures in history. Joshua A. Miele, Ph.D., Principal Investigator and Colloquium Committee Chair at The Smith-Kettlewell Eye Research Institute facilitates the interview.
–This post was written by LightHouse Resource Specialist, Amber DiPietra