In a blog called "Life Support" I don't want to spend too much time writing about death, but lately the disability community has lost some good and important people. I don't want them to die the second death of being forgotten.
Last month I paid tribute to Callahan the cartoonist. Since then we also lost an outstanding disability history scholar and advocate, Professor Paul Longmore. You can read or hear NPR's brief but good obituary here
. You can watch this compelling video
of Paul's July 26 speech about the disability rights movement.
Longmore was no ivory-tower academic. During the last weeks of his life he enlisted in the resistance to what he called Gov. Schwarzenegger's "unconscionable war against people with disabilities," that is, the budget cuts in home-based support services. He was proud to be part of the disability rights movement, and he contributed an enormous amount of energy and knowledge to help fuel it.
Paul has gotten lots of posthumous props, all well deserved. I'm going to focus the rest of this post on someone who's received far less attention -- maybe because she didn't travel and lecture as much; or because she lived in a small town in central New York, which doesn't possess the cool crip cachet that the Bay Area has. Or because she was a woman, and sexism is alive and well both in the US news media and -- yes, I'm going to say it -- in the disability movement.
I'm talking about Barbara Knowlen, who passed away on July 24 at the age of 69. I first learned the news about six weeks later, in an e-mail from someone I don't know. The writer, a disabled woman, was asking for help with a Social Security work incentive program called "PASS," which is designed to let disabled people try employment while keeping essential benefits. Barb had been helping her until her death, and now she was at a loss. "She was the only sharp, knowledgeable, and gutsy person I knew I could rely on to do battle with SS," she said of Barb.
That's the kind of thing a lot
of people said of Barb. When it seemed that no one else could cut through the thicket of contradictory regulations, misinterpreted guidelines, suspicious administrators, and bureaucratic bullying, Barb could do it. She knew the rules inside and out, and she could argue forcefully.
Barb was a T1 paraplegic who also had multiple sclerosis. In the 1980s, she worked in the independent living movement in Missouri and Oklahoma. Then she decided she wanted to start a business designing and selling advocacy posters and other products and service. She encountered opposition when she asked help from Kansas Vocational Rehabilitation. They tried to use the rules to limit her choices; she taught herself the rules and beat them at their own game. Based on that experience, Barb wrote a consumer manual aptly titled "How to Kick Ass and Win."
From that time on her company, Barrier Breakers, continued to sell posters, but also provided information and, increasingly, direct advocacy, to support people in achieving their work goals using Vocational Rehabilitation and Social Security benefits. To get an idea of her services, attitude, and approach, check out the archive of her Barrier Breakers website
Barb also stayed involved in other disability advocacy issues like ADAPT, independent living, and medical discrimination. In a notable exception to the lack of online tributes to Barb, Stephen Drake devoted a recent edition of his "Not Dead Yet News & Commentary" blog to talking about some of these other aspects of her work
Since 1994 and Barb had been helping people write "PASSes" -- Plans to Achieve Self-Support -- which allow SSI recipients to earmark any extra income (earnings, SSDI, family contributions, etc.) for expenses they need in order to work or get ready to work. Those "set aside" funds then don't count against their SSI eligibility. That means a person can work toward a dream job (as long as it's "feasible") by paying for training, an adapted computer, a lift-equipped van, or whatever, all while continuing to get a monthly SSI payment and, more importantly for most people, Medicaid coverage.
All of this has to be approved by a series of bureaucrats, of course, and some of them just love to say no. That's why Barb didn't just write
a PASS, she stuck around and fought for it. She did this for people all over the country. I always admired not only her effective advocacy for her clients, but how personally she seemed to take it when SSA messed with them. She would describe a client's circumstances, highlighting how hard they were working and how much they deserved the opportunities they were seeking. She was indignant that anyone else could fail to see the plan's or the person's merits, which were so clear to her.
Just two years ago, she helped a friend of mine here in Colorado deal with a hostile response to a perfectly reasonable proposal. Before Barb got involved, my friend was at risk of losing her job offer, her savings, and her hopes for success. When we finally called Barb, she transformed the situation. She pushed past the problem bureaucrat, got to the right people at SSA, and made a strong case for my friend's plan based on the rules and intent of the PASS program. She kicked ass, and my friend won.
Copyright 2010 Laura Hershey