This post is part of the series 14 Questions
, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. Director of Advocacy Strategy, Justin Richardson interviews James Weisman, President and CEO of United Spinal Association in our first post.
Richardson: We’re always curious to learn how our team members and others involved in the Complex Rehab Technology world made their way to our industry. Most have unique stories. I imagine the same would be true for those working in disability dedicated non-profits. Were there any specific relationships or situations that led you to a career of assisting/working with those living with disabilities?
Weisman: When I was 16, I followed a girl I was interested in to a day camp for children with disabilities. I couldn’t drive yet and had no job. My father said, “summer school or work” and that volunteering counted as work, so I volunteered at the camp. I met Paul Hearne there who had osteogenesis imperfecta. He was a little older than I was, so he could drive. We became friends and I made friends with other teenagers with disabilities. Paul and I went to law school at the same time but not together. In 1977, the year I graduated law school, HEW Secretary Joseph Califano had signed the first set of Section 504 regulations. I ran into Paul on the street in Manhattan and said congratulations and he said, “it’s just a piece of paper.” That night, despite knowing each other for 10 years, we had our first conversation about the rights of people with disabilities. Two months later, we were working together at Community Action for Legal Services, Inc., where we opened the first architecturally accessible Legal Services Corp. office in NYC.
Richardson: In your 40 years as an advocate on behalf of the community of those living with disabilities, what do you see as the most significant movement or moment that you’ve had the opportunity to be a part of and/or experience? Why was that particular moment the most significant?
Weisman: The most significant thing I’ve ever participated in was the crafting of, and lobbying for, the passage of the Americans with Disabilities Act (ADA). The transportation provisions of the Act are based on settlement agreements EPVA (now called United Spinal Association) made with NYC and Philadelphia, not because they were brilliant but because we had to grandfather-in the NYC and Philadelphia deals to garner Democratic Congressional support. Clearly, making 50% of NYC taxis accessible by 2020 would be #2, but the ADA effort, of approximately two years from introduction to passage was an exquisite coming together of advocates from all over the U.S. to do something big and important. The friends I made during this struggle will always be dear to me. About 20 of us reunited for a dinner on the 25th anniversary two years ago in Washington, D.C.
Richardson: You’re credited as being one of the individuals responsible for drafting the framework of the Americans with Disabilities Act, legislation that most view as directly responsible for many of the opportunities those of us living with disabilities have today. In 1990, prior to passage of the ADA, did you have a clear sense of just how important this legislation would be to those living with disability once it became law?
Weisman: We knew how important it was when we were putting the ADA together. The opposition knew it too. Business and transit lobbyists made it clear that the changes would be as significant as we thought they would be.
Richardson: You were part of the ADA signing ceremony, held on the White House lawn on July 26th, 1990. Please tell us about that experience.
Weisman: I was on vacation with my children but I knew the bill might be signed while I was away. I took a suit with me, just in case, and I got a call from my office telling me the Bush White House had invited me to the signing ceremony. I got in a cab at the DC airport and said, “The White House” and felt like a big shot. When I got there, however, I realized just how insignificant I was. What looked like thousands of people with disabilities were assembled on the White House lawn. I realized generations had lived and died to make this happen and that I was lucky enough to be riding the crest of the wave as the bill passed. It was as inspirational as it was intimidating.
Richardson: United Spinal has been a vocal opponent of H.R. 620, the Education and ADA Reform Act of 2017? Do you feel as if the ADA is in need of reform in any way? If so, how? If not, why?
Weisman: H.R. 620 – the ADA Education and Reform Act will completely undermine the barrier removal requirements of the ADA. The 27-year-old mandate to remove barriers will still be written into the law. However, the effect of H.R. 620 will be to tell the bad actors “don’t worry, you don’t have to do anything until an aggrieved disabled person informs you, in writing, of the ADA violation.” So, the new mandate, if the bill passes, will in effect, become “remove barriers 6 months after notice.”
Richardson: You often speak passionately about ensuring accessible transportation. Was there anything in particular that led to your interest in this specific issue?
Weisman: My interest in transportation began almost as soon as I started practicing law. I lived in Manhattan at the time. 80% of NYC residents who work use mass transit to get there. I knew transportation was a big issue, but in September 1977, disability advocate, Frieda Zames, a post-polio math professor, came to see me and Paul Hearne. She talked about a public hearing where disabled advocates would urge our MTA to buy accessible buses and asked me to accompany her. The MTA board ignored the speakers with disabilities. They got up and got coffee, actually held side conversations, left to use the bathroom, etc. and returned to paying attention when the speakers with disabilities had finished. It got under my skin. Paul Hearne said to me, “you do transportation, I’ll do employment” – as if we could actually accomplish something.
Richardson: You played an important role in lawsuits against the New York MTA and Philadelphia Transit Authority. These efforts led to dramatic increases in transportation opportunities for those living with disabilities. In both large cities and rural areas, what do you see as the greatest barriers to accessible transportation today?
Weisman: Even though the whole world is wired, mobility is essential if PWDs are going to be independent and employable. So much money is spent on “special” transportation – be it paratransit, school transportation, VA transportation, nonemergency medical transportation, vocational rehabilitation transportation, etc. and the coordination of the dollars is virtually nonexistent, especially in large, urbanized areas. We got President George W. Bush to allow pooling of these dollars, but it is just not happening in urbanized areas. “Key stations” should give way to “all stations” and I honestly believed that by now, 27 years after ADA, and 32 years since we settled in NYC for key stations, (which was all the most liberal politicians would consider) that a consensus would develop that would make every station accessible.
Richardson: Technological developments often seem to outpace regulations designed to keep them in check. Are there any other areas where you believe technological advancement, which is usually beneficial to those with disabilities, could create problems for the community?
Weisman: Uber type services are revolutionizing the taxi industry, but are leaving wheelchair users by the curb. Unregulated Uber types may put our accessible taxis out of business in NYC and replace them with inaccessible service as our elected officials do nothing. Autonomous vehicles (i.e. self-driving cars) are being developed as we speak and will change the concept of car transportation. People may not own cars anymore, because they can be summoned in minutes, and even if they do own them, they won’t have to drive them, making autonomous vehicles available to severely disabled people, blind people, elderly people, etc., BUT the vehicles being developed now use standard cars, almost all of which would be inaccessible to wheelchair users. An autonomous vehicle should be developed that is accessible to all people with disabilities.
Richardson: United Spinal has been a strong supporter of efforts to protect access to Complex Rehab Technology (CRT), often placing this issue as one of its highest legislative priorities at its annual Roll on Capitol Hill (ROCH). With such a large number of issues facing the SCI/D community, what factors afford continued access to CRT such high priority?
Weisman: Just about every one of our members uses a wheelchair that is not just “one size fits all” chair. It is imperative that proper equipment be available to avoid skin breakdowns and other physical problems and allow active, healthy lifestyles and full participation in community life. We feel that putting our members’ faces on this issue is more effective than the CRT industry lobbying without us. Congress and executive agencies think they’re doing a good job when manufacturers and vendors tell them they’re cutting into their profit margins. When we tell Congress that government policy stops research and development, makes appropriate equipment harder to get and people less mobile and sicker, the term “profit” never comes up.
Richardson: Where do you hope the Complex Rehab Technology will be 10 years from now with respect to technology, awareness, access, funding, etc.?
Weisman: Life expectancies keep increasing. Theoretically, everyone could end up on wheels before they die. It is imperative that our CRT policies promote, research into lightweight, durable, manual chairs that can be custom designed for each user. The development of a transit-safe chair that uses a universal tie-down mechanism is essential. In my adult lifetime, I’ve seen complex motorized chairs use sip and puff controls, joysticks, Google Glass, etc. and I’m just too unimaginative to think of what comes next.
Richardson: There are many disability based groups throughout the country that are active participants in the advocacy process. However, many living with disability choose not to become personally involved. With so much on the line directly affecting quality of life, healthcare, community integration, etc. - why do you think so few choose to participate? What do you see as the primary barriers to participation?
Weisman: It is hard to determine what it is in people with disabilities that makes them get involved in advocacy. Obviously, the overwhelming majority of PWDs do not involve themselves. If we could just touch whatever motivates PWDs to involve themselves, we could run the country - since we number over 55 million. PWDs do not vote as a block or even register in just one party. They are assimilated into families and adopt those family values. Most have to be educated about their rights. I believe advocacy is emancipating, the same way I believe using mass transit is emancipating for PWDs. For 50 years, I’ve watched wheelchair sports reintegrate and rehabilitate newly disabled people into community life - so does advocacy. It is also a ticket to employment. Once a PWD gets involved in advocacy, they meet elected officials. Many volunteer and work for an elected official. If they are competent, they get jobs. Advocacy is also fun. Wins are great and losses are shared. The community hangs together either way.
Richardson: What would be your advice to equipment providers, manufacturers, and clinicians interested in better collaborating with individual advocates and advocacy groups such as United Spinal?
Weisman: United Spinal would love to coordinate Washington, D.C. and state advocacy efforts that involve manufacturers and vendors with our members interested in advocacy. Many reimbursement decisions are made in state capitols. They should contact United Spinal so that we can make this happen.
Richardson: What resources does United Spinal provide that may be of interest to Numotion customers?
Weisman: Our websites contain information about equipment, rights, barrier-free design, and just about every disability related issue. Moreover, our interactive “Ask-Us” and Ask VetsFirst” sites answer questions via email and telephone for all callers. We publish New Mobility Magazine and it is free to all members - its lifestyle articles reaffirm life after injury or impairment. United Spinal has over 50 chapters and 48,000 members. Numotion customers should join a chapter or let us help them start one.
Richardson: What would be the best way for our customers to connect with United Spinal?
Weisman: The best way to connect with united Spinal Association is via email – email@example.com or use the Ask-Us site: https://www.unitedspinal.org/ask-us/ or call 1-800-962-9629.
James Weisman is President and CEO of United Spinal Association.
For 35 years Mr. Weisman has advocated for the rights of people with disabilities including helping craft the landmark Americans with Disabilities Act of 1990 (ADA). Mr. Weisman is a founding member of the Board of Directors of the American Association of People with Disabilities (AAPD).