Guest Alison Barkoff, Director of Advocacy at The Center for Public Representation.
Guest former US Senator Tom Harkin
Rebecca Cokley Director, Disability Justice Initiative at the
Center for American Progress
Guest Andy Imparato, Executive Director Association of University Centers on Disabilities.
Guest Susan Henderson of the Disability Rights Education Defense Fund.
Bob Kafka: Welcome, this is Bob Kafka with Barrier Free Futures. Have you ever thought about the ramps that are in on the sidewalk, the captioning that is on your TV show, about children with disabilities included in school, travel in airports? A lot of this comes from the hard work of community organizing, but also from legal advocacy. Today’s guest is Susan Henderson, the executive director of Disability Rights Education and Defense Fund, which is one of the premier legal disability rights organization in the country. Welcome Susan.
Susan Henderson: Thank you Bob, thanks for having me on.
Bob: You know, my first experience with DREDF, was I was living in Houston, Texas at the time, and Section 504 of The Rehabilitation Act, which had preceded the Americans with Disability Act, had passed. I went to a DREDF training in Houston Texas and that was my first experience with DREDF and I must say that I was quite impressed in terms of that. Let me start with personal stuff. What got you involved with disability rights?
Susan: So, my first foray into disability rights was when I came to work at DREDF in 1997. It was completely fortuitous. I'm a woman with a disability but I hadn't been involved in the movement. But there’s a weird connection that happened for me and it's related to 504 in a sense. In 1977 I was in college and I decided to take a year off and bought a Volkswagen bus to travel around the country. A typical 1977 thing to do. I took the bus into San Francisco--I grew up in the Bay Area--and I took the bus into San Francisco because I figured if I could shift the bus on the hills in San Francisco I could drive it anywhere. And that day, in April 1977, we were driving by the Civic Center and we could see that there was a protest. We were like what's that? So we stopped and we got out and we saw that it was a bunch of people with disabilities. I had no idea what 504 was, but it was on the news that night, and I was like, whoa, that’s interesting. That same year, I was going to UC Berkeley at the time. That was also the year when the Moonies we're very much out and about, and for some reason I was often approached by them. One day I was standing on the corner saw some people coming to me to invite me to dinner at a house up in the North Bay. I went into a building that looked welcoming and it turned out to be the Center for Independent Living on Telegraph Avenue. Both these things happened in the spring of 1977. In July of 1977, in that same Volkswagen van I was in a collision and lost my leg. Thirty years roll around to 1997, and I'm finishing my MBA, working full-time at a law firm, I have twos little kids and I'm going to school at night and I thought I want to do something more meaningful in my work environment. I want to be involved in a movement. I don’t want my MBA just to go to working in private law firms. I opened up the legal newspaper and there was a job opening at DREDF for an administrator. The rest is kind of history. I walked into the interview and I felt like I found my people. I also lived six blocks away so I could walk or ride my bike to work and it was a perfect fit. I've never looked back
Bob: That story is amazing. Our audience might not know, but that 1977 protest you drove by was organized by group most people don't even remember their name in disability history, the American Coalition of Citizens with Disabilities. Yeah, it was a long time and that protest helped get the regulations for Section 504 finally published. Can you tell the audience what DREDF actually does, I introduced it as the premier law, but I know you do more than just cases.
Susan: We were founded, DREDF was founded, in 1979 by people with disabilities and parents of kids with disabilities. It was modeled after other civil rights legal defense funds. It was founded to advance the civil and human rights of people with disabilities through advocacy the legal side, training like the 504 training you went to back then, education, just educating the public about issues directed at people with disabilities, public policy and legislative development. We work with those core principles of equality, equity, disability accommodation—accessibility, inclusion and justice. Our founders, Mary Lou Breslin, Arlene Mayerson, Pat Wright and Bob Funk embedded that in the organization, and we still follow, they are still at our core. so the legal advocacy is pretty obvious. We do impact litigation, class actions, and every once in a while we'll take on an individual case as long as it's very cutting-edge and will have an impact. We have a one-person Washington DC office so we look at work on national policy usually in coalition with other groups both Disability Group and other civil rights groups. We have a, we've always had a children and family advocacy unit program which is fairly unique for a disability rights groups, sort of the bringing together of adults with disabilities and parents of children with disabilities. Every day we have advocates who assist parents to make sure that their kids get appropriate services and education in school. We do a lot.
Bob: Yeah you know the thing that I've always been impressed with DREDF that is different than a lot of other organizations, or just lawyers in general is that they do good legal work, but they don't interact with the community. I've always felt that that was a needed part of any lawsuit. Not all lawyers believe that. I get the sense that the philosophy of DREDF really sort of sees obviously the technical legal basis for things, but that includes community organization. Is that part of the philosophical grounding of DREDF?
Susan: Oh sure. People with disabilities, the grassroots have always informed our work. That’s how we know what issues we want to approach. The fact that something like 90% of the people who work here are people with disabilities or a parent of a child with a disability, our board is primarily made up of people with disabilities, that is how our work is informed. Then we go outside. And like I said we hear from parents every day, so we hear about the systemic issues in education.
We're all out there living our lives as disabled people, we know other disabled people. We’ve been in this work for so long that people call us every day. We get calls from around the country every day. Some people, like you, it was interesting when I started at DREDF in ’97, I would be traveling to some conference, or visiting family in other parts of the country, and I’d meet people with disabilities who would say to me, “I went to DREDF’s 504 trainings, that’s how I got involved in the movement.” Or, “I went to DREDF’s post-ADA trainings, that’s how I got involved in the movement and I’m still doing it.” Which is an incredibly fantastic thing to hear about an organization where you work. How respected it is among people all throughout the country.
Bob: Yeah you know I've always believed, and we came up with this Pitchfork approach to social change, and I think DREDF is an incredible piece of that Pitchfork as the legal arm. But then there's the direct action which grassroots organization like ADAPT and other groups do. And there's obviously the political legislative arm and then there's obviously the education media and then obviously the bureaucratic.
Could you talk about the roll that DREDF played with the ADA, because you mentioned Pat Wright and in all books about the passage of the ADA and DREDF is mentioned all through there but in particular Pat Wright, and she is always described as the general to do so to embellish on that
Susan: Or sure. So, Pat Wright was our woman in Washington DC at the time of the lead up to be ADA, which groups started working on it in 1988, there were drafts of the ADA and people were thinking about it before then. She was a very strong organizer, leader, thinker, and she was just in the right place at the right time with the right people and took on a roll that was, in some in the background because she was meeting with you know the Administration leaders, with people on staff on the Hill. She had our Arlene Mayerson as the, you know one of the legal minds during the crafting and all of the drafting and on all of the issues that we're coming up. She organized people from many different walks of life to help bring the ADA to life, to give it its life. She was very connected with Senator Kennedy, and Senator Harkin, Tony Coelho during those times and their staffs. I think she probably worked 80 hours weeks for years during those times. It’s something to be a part of an organization, to look out to see the difference that the ADA has made in the lives of millions of people. It’s just incredible. Some of the things that I always think about, when I’m drifting and wondering about disability rights and disability in general is the impact that the ADA has had, just not on the ADA but on the world. All the countries that have modeled after the ADA is just incredible. ADAPT was part of that movement too.
Bob: One of the ways that I knew the world had changed, I was going to a strategy meeting and it was in Philadelphia, it was the hotel right near the airport and went in and you know I had reserved, Stephanie Thomas, my wife is also in a wheelchair and you know we had like I said reserved an accessible room, and when I went up, the clerk said, “Roll-in shower or tub?” I must admit, I smiled. I mean that seems like such a simple question but years ago not only could you not find an accessible room, it would have been impossible even to get there. People, you know now take so much of this stuff for granted. But let me ask you a question. How do you heard all these high-powered lawyers that DREDF has? I’m sure that there are a bunch of egos within the legal profession and you as the executive director probably have a sort of bringing folks together style of management.
Susan: So you know, the one thing that is really interesting about DRED is that we have these brilliant thinkers and doers that have just made incredible change over the years. I think I somewhat adapted to their styles. The only herding I do is probably more administrative than anything. I let people be who they are, I let them go with their strength and I think they've adapted to my management styles in return. You’ve been working together, for what, 22 years, you find, you know each other’s strengths and weaknesses, you learn how to work together to make everything positive. Like any organization we have a culture and I think that culture works for us.
Bob: Well, I can tell you from some of the results that you’ve had, and when we come back of the victories that you’ve done over the years and some of the challenges we have in the future. This is a Barrier-free Futures KSFR, 101.1, Santa Fe and we will be right back.
Bob: I'm here today with Susan Henderson the executive director of DREDF, Disability Rights Education and Defense Fund. Susan, when we left we were talking about the ADA. What are some of the legal issues and other types of things that DREDF is doing now?
Susan: So, now we're working on the issues that are impacting people with disabilities and their families all throughout the country. We are confronting, we’re investigating cases about the abhorrent use of restraints and seclusion in schools, which really has no place in education and you would think that in this day and age we’d recognize how harmful it is to hold down a child or place a child in what is effectively solitary confinement. But it's not, it's harder than you think to be able to change a system that has come to depend on controlling children as opposed to assisting them to improve challenging behaviors. So, we're working on that. We're also, we've always worked on cutting-edge issues. I was just reading a paper that we had written in 1998, that included the need to reach out to the child welfare system because children who are foster youth, who have a very high incidence of disability were not getting educational supports that they should be in school. It’s a very advocacy-based system, so since 1998, we’ve been working to support the needs of foster youth with disabilities in school, and a lot of that is training the systems that touch those children. Some of the other cutting-edge issues were currently working on, is like last year, a lot of it is reaching out to, you know we've always worked in a coalition with other civil rights groups and other disability rights groups. In the last few years we've broadened that that reach. Last year we joined in on a Amicus brief in a case called Doe v. Massachusetts Department of Corrections. It was about a transgender woman who was seeking to be placed in a women's prison as opposed to a men’s prison which is where Massachusetts had placed her. Our brief challenged the historic exclusion that was of transgender people for coverage under the ADA. I am glad to say that the organization that brought it, GLAD, was successful and she was transferred to a women's prison where she should be. We just recently worked with the Bazelon Center from Washington DC who seek, who work with people with mental health issues, to develop an amicus brief in the Texas vs. U.S. case in the Fifth Circuit, which is about the Constitutional challenge to the Affordable Care Act. We helped draft that brief with a private law firm called Dentons representing 15 disability rights organizations. I think we were the only disability brief in this case. Those are some of the kinds of things that we are doing. In policy, we continue to work in transportation. A lot of the work we’re doing in DC is about the future of transportation. As autonomous vehicles are developed we want to make sure that there are no policies or legislation whether it's national or state that prohibits the use of those vehicles by people with disabilities. We continue to work on air travel, that kind of stuff.
Bob: You mentioned transportation. Somebody that is actually a native Texan who went to the what I call the land of milk and honey when they went to San Francisco Marilyn Golden who does transportation and was involved with the push during the ADA and helped do a lot of the state by state so there’s that connection. But I want to, if we could talk a little about the Affordable Care Act case, because when people hear about pre-existing conditions, they don’t automatically see that as a disability issue. But those of us who have disabilities, every single one of us, have a pre-existing condition and sometimes I think it gets lost in the mix. That disability brief is critical. Can you expand on that a little bit? I’m embarrassed here as a Texan; our attorney general has led the push for that case.
Susan: Right, so one of the reasons of course we don't want the ACA to end, because it now doesn't allow insurance companies to exclude people on the basis of their pre-existing conditions. I'm a person who as an individual, years ago could not get insurance coverage because I had two or more pre-existing conditions. I know how important this is to millions of people in America whether they even think of themselves as having a disability or not. You are right on about that. Most people just think pre-existing condition. They don’t realize, you know, that they are covered under the ADA and 504, they are a person with a disability like you and me. We don't want to see the expansion of Medicaid rollbacked either. That coverage, people can't afford health care coverage. In many states where they expanded Medicaid, thousands and thousands and thousands of people have been able to get coverage with support from their state. It would just be a disaster, it would totally a disaster. The ACA has things that we want to improve on, but to lose it would be devastating.
Bob: I agree. You’ve been around for 22 years. I've been around for a long time. What’s your projection or your thought about the future. Are young people going into disability law? What is the disability law landscape at the universities around the country?
Susan: I think you touched on it before. There’s a whole generation that grew up with the ADA, that now has a different set of expectations than we did growing up or pre-ADA. Inclusion and accessibility are the expected standard. We know that's not there all the time, but they don’t know anything else. They didn’t know that there weren’t ramps, they didn't they didn't know there weren't and curb cuts, and elevators, and you know, telephone assistance for people who are deaf that there wasn’t relay.
So I think they've got a different kind of expectation. It's embedded in them to expect these things and to push forward if they're not there, so I'm pretty optimistic as far as the future. As far as people going into disability rights law, let's hope! There's certainly been initiatives over the years to make sure there's a pipeline of lawyers. DREDF’s Arlene Mayerson, Linda Kilb and Sylvia Yee from our office have continually had a disability rights class at Berkeley Law school. Every year DREDF and other disability rights legal organizations host fellows who are recent law graduates who come and work for a year or two years with us. We just hired our last two fellows, so we have two new, two fairly new staff attorneys who have disabilities. Paces like the Coelho Center for Disability Law, which is a fairly new organization, has an initiative that is focused on creating a pipeline of law students with disabilities. I think the future looks good.
Bob: Are there, besides out there on the west coast, are there any other school that you know because, I know there are few schools around the country that have disability studies, there are few, but they are growing in terms of that. Because Steve Gold, somebody that you know very well, told me at one point, this a few years ago, that they were more people going into animal rights law than disability rights law. I personally think that we need the lawyers to be able to be part of that pitch for, because just direct action, just you know, legislation sometimes doesn't get the change that we want.
Susan: Right. I suspect that there's still most people, we used to always, when I first came to DREDF, we used to sort of bemoan that most students coming out of law wanted to go into environmental law, and I thinks that’s still true to some extent. But there are law schools, Syracuse Law school has a really robust disability rights strand. I’m pretty sure that Georgetown and American University in Washington do. Sam Bagenstos at the University of Michigan. I'm just sure that there are other law schools have a strong disability rights courses. I think that's all really good. I think that it’s growing, I don't think we're going to roll back on disability rights. I think people, see especially since people are really starting to see that how disability intersects with everything.
We often collaborate now with like health advocacy organizations, you know because of the ACA, because of Medicaid. Like I just mentioned we're working with LGBTQ groups. I think people are starting to recognize, that’s one of those things about youth. They’re seeing their intersections. You might be an African American lesbian with a disability and you're seeing those intersections and how they impact. Disability rights are hard to ignore.
Bob: The one thing that I've seen about the crossing over the various different groups is that they're able to identify people with disabilities that here to for did not get involved in the traditional disability community. Even if they don't go into disability law, most disability organizations need to get new people, not only young, but people who are going to do that. We have about a minute left. If you had all power, Susan, and you had one thing that you could slam dunk, make happening in the next month what would that be? I know I put you on the spot.
Susan: Medicare for All. I think universal single payor healthcare is vitally important. But it’s hard! I want a whole list; I want more than one thing.
Bob: yeah you’re probably like me, you're an old hippie. I had this vision of when you were talking about driving around, of an old VW Microbus with all the different paint on there and the bumper stickers. Susan, if people wanted to get more information about DREDF and how they can get information on some of the law cases or just general information about DREDF, how would they do that?
Susan: Check us out on the Internet. www.dredf. Which is D as in David, R as in red, E as in elephant, D as in David and F as in Frank.org. Or visit us on Facebook, too.
Bob: All right. Well today guest, Susan Henderson, executive director of DREDF. It’s been a really informative half hour ,and I hope that you get your wish and healthcare for all becomes a reality. Bye!
Guest Dohn Hoyle, Director of Public Policy, Arc of Michigan on alternatives to guardianship.
Guest Rod Bassman is the Executive Director of Mind Freedom, a nonprofit organization that unites sponsor and affiliate grassroots groups with thousands of individual members to win human rights and alternatives for people labeled with psychiatric disabilities.
Guest Colleen Starkloff of the Starkloff Disability Institute.