Roundtable Discusses 20 Years of Disability Rights

[Note: this article is also available in audio format.]

Equip for Equality's 20th Anniversary Logo This year marks Equip for Equality's 20th anniversary. This and the next issue of the Equalizer will feature various retrospectives spanning the period. This issue introduces a new forum to the newsletter called the President's Roundtable in which leaders in and authorities on certain disability-related fields gather to discuss compelling topics. To commemorate Equip for Equality's 20 years of service, the inaugural Roundtable subject is disability rights and self-advocacy over the past two decades.

Equip for Equality president and CEO, Zena Naiditch, leads this issue's Roundtable, featuring Marca Bristo, executive director of Access Living; Curt Decker, director of the National Association of Protection and Advocacy Systems, Inc.; David Hanson, recently departed commissioner of Mayor's Office for People with Disabilities and now commissioner of the Mayor's Office for Workforce Development; Tamar Heller, head of the Department of Disability and Human Development, University of Illinois at Chicago; and Andy Imparato, president and CEO of the American Association of People with Disabilities (AAPD).

In addition to the new items in the Equalizer, be sure to check Equip for Equality's website for special events tied to this milestone year in the organization's history. We hope that you enjoy our new feature, and we welcome your remarks on these and other issues.

Photo of Marca Bristo Marca Bristo is president and CEO of Access Living of Metropolitan Chicago, one of the nation's foremost disability rights organizations. She is the first person with a disability to be chairperson of the National Council on Disability and the first person with a disability to serve on U.S. delegation to the United Nations. She is currently working to establish a United Nations convention on the rights of people with disabilities.

Photo of Curt Decker Curt Decker is executive director of The National Association of Protection and Advocacy Systems (NAPAS) the nation's disability legal advocacy network. Previously he was director of the Maryland Disability Law Center, the Maryland P&A; senior attorney for Baltimore Legal Aid Bureau; and director of The H.E.L.P. Resource Project for Abused and Neglected Children. He is currently chair of the Consortium for Citizens with Disabilities a coalition of over 100 national disability groups.

Photo of David K. Hanson David K. Hanson is commissioner of the Mayor's Office for Workforce Development (MOWD) and is one of the Midwest's leading authorities on accessible housing and architectural design. He is also the founding co-chair of the Mayoral Task Force on Employment of People with Disabilities and was previously commissioner of the Mayor's Office for People with Disabilities.

Photo of Tamar Heller, PhD Tamar Heller, PhD, is professor and head of the Department of Disability and Human Development, University of Illinois at Chicago, as well as director of its University Center of Excellence in Developmental Disabilities of Illinois, the Rehabiltiation Research and Training Center on Aging with Developmental Disabilities, and the Advanced Training for Disability and Rehabilitation Scholars Program.

Photo of Andrew J. Imparato Andrew J. Imparato is the first full-time president and CEO of the American Association of People with Disabilities (AAPD), a national non-profit, membership organization of people with disabilities, their family members and supporters. Prior to AAPD, he was general counsel and director of policy for the National Council on Disability and also worked as a special assistant to Commissioner Miller at the U.S. Equal Opportunity Commission.

INTRODUCTION (Listen/download audio - 1.3 mb)

ZENA: Welcome to Equip for Equality's first President's Roundtable. As you know, 2005 marks Equip for Equality's 20th anniversary, and I'd like us to look across those two decades to take historical account of the disability- rights movement and most importantly address our current challenges. To begin broadly, I'd like to discuss the current state of disability policy in the United States.

CURT: I think we're in a critical moment. We are celebrating 15 years of the ADA and 30 years of IDEA. There is a fairly committed group of people in Congress who see disability issues as important, but at the same time, we're at risk of losing a fair amount of our historic gains. We had a near death experience with the IDEA reauthorization and came out of it as best we could. Nonetheless, parents are going to be in a much more difficult position than they were under the previous law. We have to build a better rapport with the general public.

TAMAR: One of the ways that we can ally on some of these issues is, for example, with the aging network. AARP and the National Council on Aging are active on such issues as social security and private investment plans. But I think that we have to make sure that there are coalitions across disability groups, too. With the ADA, that was very effective.

ANDY: Arguably since 1985 and maybe even since 1975, the disability agenda for the country hasn't changed significantly. I think if you look at our outcomes in terms of employment, high school graduation rates, higher education participation, home ownership, and people who are not living in poverty, our outcomes are, from my perspective, problematic, and it's causing me to question whether we've articulated our goals correctly, or whether we've pursued the right strategy to achieve those goals. I know there's been important improvement in some areas, like the accessibility of new buildings and transportation and telecommunications, but if it's not leading to better outcomes in the areas that I mentioned, then I think we need to come up with some new ideas and strategies as we look forward to the next 10 years and beyond.

EDUCATION (Listen/download audio - 4.0 mb)

ZENA: The IDEA is supposed to ensure that kids get individualized appropriate services that are in the least restrictive setting. Why do you think that has failed to result in significant changes in terms of educational outcomes for these kids?

CURT: I think IDEA's major success has been that we have moved kids away from being institutionalized. Charlie Laken's report says that there's about 2,000 kids under the age of 21 in developmental disability facilities - 20 or 30 years ago, that was a much higher number, and I think IDEA has helped that problem. Where it doesn't seem to have the same impact is what happens to these kids when they graduate. Are they getting jobs, or are they just going on social security and retiring at 18?

ANDY: Bill Gates gave a speech at a summit on high schools on February 26 in which he made the point that, from his perspective, only about one-third of people graduating from high school right now are prepared for making a living wage. If you buy into that vision, I see that as an opportunity to radically rethink education and plug a disability sensibility into that. Education's not working period. The National Council on Disability [NCD] in 1996 recommended that we stop talking about special education, and from my perspective, that was an important recommendation that didn't get enough attention. I think if we can move to an individualized approach to education for all children and stop talking about special education as a field, we're going to make progress more quickly.

MARCA: Ten years ago, on issues like the IDEA, we were able to find people on both sides of the aisle who were willing to overcome their own party's disagreements. Since the Gingrich era, and now a sort of shift to new Federalism, there's been such a digging in. In an ironic way, it's no longer embarrassing to do bad things to policies that help kids with disabilities. We've got to elect different kinds of politicians that can reach across the aisle and make things more civil.

SELF-ADVOCACY (Listen/download audio - 3.5 mb)

ZENA: Andy, AAPD was formed as a way of giving a national grassroots voice to disability issues. Where do all of you see the self-advocacy movement today? What progress has been made, and where do you see room for greater success?

ANDY: Most of the organizations at the national level that are run by people with disabilities are incredibly vulnerable. I'd say the only group that's run by people with disabilities that probably is not too vulnerable right now is the National Federation of the Blind, maybe Paralyzed Veterans of America. For the most part, these groups are financially fragile and don't have a lot of capacity to do the kind of advocacy that needs to occur at the national, state, and local levels.

MARCA: Twenty years ago, there wasn't even a developmental-disabilities rights movement, which pretty much started around 1990. But, I agree, they're rather vulnerable as they try to assert themselves and get into clashes with some of the other groups, sometimes the families, sometimes some of the professional groups. We're seeing, for example, how SABE [Self Advocates Becoming Empowered] is trying to negotiate its place at the table.

CURT: It's been an interesting experience with SABE. They're achieving a level of sophistication where they can be at the table and work strategically to gain the attention of more established organizations. But at the same time they need help in how to use this new power, how to work in coalitions.

MARCA: To the question of political empowerment - Andy, I hope you'll chime in here - I think that we haven't figured out yet how to find our electoral muscle and do it in a strategic way.

ANDY: I agree, but I do think it's worth separating out two different issues here. To me the political power thing is bigger than the self-advocacy question. What I am hoping will occur is that lots of groups that aren't necessarily self-advocate groups will work together with self-advocate groups around getting out the vote.

CURT: Politically, people with disabilities are just like everybody else - they can be as conservative or as liberal as anyone else. We worked hard to get out the disability vote, and I think we were surprised with how they actually voted. That comes with the territory.

DAVE: We're not just politically broad, we're also ethnically diverse. We've been doing better in addressing this area, but we've got a long way to go. A lot of kids, for instance, who went to Spaulding school for students with disabilities are from first-generation immigrant families and were very happy with that school because of where they were coming from. They looked at attending Spaulding as a great opportunity. Also in the Latino community, for instance, the family takes care of the individual with the disability, starting at a very early age and on into adulthood. It's tough to work through some of these cultural perspectives when we promote self-advocacy.

COLLABORATION / DISABILITY CULTURE (Listen/download audio - 0.9 mb)

ZENA: A lot of different groups came together to get the ADA passed. What do you think it will take to get all of these groups energized again, and, as Andy said, to develop a national strategy?

CURT: Well, I think the current Administration is doing a fairly good job of uniting us, because right now we're facing some major issues, in terms of Social Security and Medicaid cuts. And as long as we have those kinds of global issues, I think we can bring the disability community together. When you get down to issues of appropriations and money, that's when everyone sort of goes to their own individual corners and starts protecting their turf. And then we've got some issues that split our community, such as the rightto- die issue and disagreements among some of the groups for the blind.

MARCA: Pat Wright [Director of Government Affairs for the Disability Rights Education and Defense Fund (DREDF) in Washington, DC] said that one of the things that was unique about the ADA and that period of its history that it represented was we all had the same discrimination stories; we didn't have anything to lose. So it was easy to come together and now it is much more difficult to keep us together. We need more people who believe in a crossdisability philosophy. There are a lot of strong leaders who have that, but there are a lot of emerging leaders that don't.

ANDY: I agree. We're most in need of leaders at all levels who have a kind of Justin Dart view of the world. The thing about Justin that worked, among many, was that he had the capacity to love everybody and see value in everybody.

DAVE: I believe the Mayor Daley's Task Force for Employment of People with Disabilities has an opportunity to become a national model. I hope that we can take what we're learning here and move it statewide and, with further changes, nationally. But keep in mind that this is a public-private partnership, and there's a strong influence from the private sector and other agencies that traditionally haven't been involved with disabilities. One of the barriers we face is that the disability community has concerns about disclosing disabilities for fear of discrimination. It's been difficult to get voluntary disclosure on applications for employment, not just within the disability community and among private employers but also within the City of Chicago as an employer. Issues such as this have slowed our progress towards setasides or affirmative action programs.

ANDY: I think you're raising a really important issue. I had a leadership discussion this morning with a bunch of emerging leaders with disabilities, and one thing that came up is the need for a strong cross-disability identity and culture. If we had that then we could address some of what Dave is talking about. But the other thing I would say - and this is true of women and ethnic minorities, too - I don't think affirmative action should be applied to somebody simply because of status. It should be going to people who are disadvantaged, and not everybody in the disability or gender or race categories experiences disadvantage in the same way or to the same degree. I think we have to come up with a new way to define disadvantage that isn't tied directly to status and the protection of a class.

TAMAR: I wanted to go back to something Andy was saying about disability pride and disability culture. One of the things we're seeing is a growth in disability studies, and I think that's going to make a difference. Right now we have about 50 disability studies programs in this country, from undergraduate to graduate and PhD programs. We have 70 graduate students in our masters and PhD programs, and about a third of those students have a disability, some of the faculty also. I think we're going to see more leaders with disabilities come from these programs.

ADA (Listen/download audio - 1.9 mb)

ZENA: We all agree that the ADA has been eroding in recent years. What do you think have been its major successes, and what's it going to take to fulfill its promise?

DAVE: Clearly, Title III has been very effective. You see much greater accessibility in the last 15 years. From working with the design and construction community, I see a much better understanding of the ADA. I'm not saying it's perfect, but there has been better outreach and education on the ADA than there was on the Fair Housing Act. And we see projects in which architects and developers bring ADA experts in, bring inclusion issues into the design, looking beyond the minimal guidelines. This is happening not just in buildings and public accommodations, but in playgrounds and other outdoor environments as well.

TAMAR: We're also paying more attention to Web and telecommunications accessibility issues. The ADA has been an important part of our sensitivity in those areas.

CURT: The latest NOD [National Organization on Disabilitiy] Harris Poll asked people with disabilities whether the ADA had changed their lives. There was a disturbingly high number of people saying no. I do think that's probably true for Title I, where people are still feeling frustrated over the lack of progress in employment. But I am concerned that many people are taking our progress as a result of the ADA for granted. Younger people may not realize how relatively new these changes are. Not only the general public but people within the disability community are not making the connection between some of the things that are better as a result of the ADA, and we are going to lose support because of that.

DAVE: That's a very good point.

ANDY: From my perspective the ADA has primarily benefited the top onethird of the community. The exceptions are, of course, such things as mass transit, but it's really mostly middle class and mostly white folks who've benefited the most from the ADA to date.

CURT: Also in employment, the ADA probably helped people keep jobs who developed or acquired a disability, more so than those not working or seeking employment for the first time.

ZENA: We're talking a lot about physical access. What's your sense in terms of for people with mental illness or cognitive disabilities?

ANDY: Again, from my perspective, the well-educated white folks with mental illness who are working have sometimes been able to use the ADA to protect themselves against discrimination. I think for the average person with a significant mental illness or significant cognitive disability, the ADA has had a limited impact.

ZENA: Given the erosion in the ADA's scope by the Supreme Court, the concerns about opening the law up, given the makeup of this Congress, any thoughts on how it's going to play out in the future?

ANDY: I like what Steve Bennett, the head of United Cerebral Palsy, said one of his goals is. He talks about the need to create disequilibrium. He feels that we're too satisfied with crumbs, and he wants us to up the ante for what to expect. In that spirit, we should be making a lot of noise about how the courts have interpreted the ADA and we should be asking for pretty big fixes to the problems.

INSTITUTIONALIZATION (Listen/download audio - 3.4 mb)

ZENA: Advocates were cautiously optimistic when the Supreme Court weighed in on the L.C. v. Olmstead case, dubbing it "the community integration mandate." Across the country people hoped that this ruling would result in the closure or downsizing of institutions and the movement of people into home and community-based services. In Illinois, that hasn't materialized. What are your thoughts on Olmstead implementation or lack thereof?

ANDY: If you compare what the Supreme Court decided in Olmstead with what the 11th circuit ruled, and if you compare that with what the district court ruled, the Supreme Court decision in Olmstead was a very weak and narrow victory. If the 11th circuit holding or the district court had been the law of the land, those would have been very strong victories.

CURT: Right, I think we are also driven by a lack of funding and states being in terrible budget crises. Obviously they have to maintain two systems for a while as they transition from an institutional-based system, and those funds were not available. So we've got a weak ruling, as Andy said, plus this really terrible budget crisis.

TAMAR: You had asked for a 20-year perspective, and obviously there's been a lot of progress. For example, at one point, we had up to 500,000 institutionalized people with mental illness; for people with developmental disabilities, nearly 200,000. Those numbers have gone down quite a bit. Nine states now don't have any institutions for people with developmental disabilities - at least state operated institutions. In 1987, prior to the Nursing Home Reform Act, nationally some 50,000 people with developmental disabilities lived in nursing homes, of which less than 20 percent needed skilled nursing care. Now there are about 30,000. In Illinois there were 3,000 people with developmental disabilities in nursing homes before the act and now it is about 1,000. We still have a lot of people with mental illness living in nursing homes, and of course, people with physical disabilities. There's still a long way to go, but there has been progress if you take a longer perspective.

MARCA: I've been disabled for almost 28 years. I've always said it feels as if I've been a citizen of three different countries: There was the country that I lived in before I was disabled, which was pretty open to me; the country I was in immediately after becoming disabled where everything shut down and there was virtually no place to go with respect to the social aspects of life; and then the country after 1988, which, while we still have a long way to go, has seen dramatic changes. Now, that's largely coming at this from the perspective of a wheelchair user, and I'm very cognizant of the fact that there are less visible changes, or less meaningful changes affecting other people. But even so, if you look at how technology has begun to open up communication options, even with its limits, there's just so many more options for people for example who are deaf to be able to communicate with people compared to 20 years ago. So while I'm still of the view that we haven't moved the map very much, I think we've moved it more than any other period of history moved it before.

And yet the attitudinal issues are so entrenched. I'll give you an example. This happened this morning. I was going to a doctor's appointment on Michigan Avenue, and there was a homeless guy who came over and opened the door for me, and he showed a kind of pity for me. I thought, my gosh, here's this guy who has hardly any clothes, living on the street, and he was pitying me, me who has so much.

Then you watch the overwhelming response of the American people to Million Dollar Baby, and think no wonder people have these feelings. It's so deeply entrenched. My hope is with the younger generation. As a mom, I see the different ways my children's friends and kids at school interact with me. It's a whole lot more matter of fact for them.

P&As' & CILs' ROLES (Listen/download audio - 4.7 mb)

ZENA: The P&As and the independent living centers are two of the larger federally funded advocacy systems. If you think about us in terms of collaboration, how would you like to see that relationship looking forward?

MARCA: Equip for Equality and Access Living work pretty close together, and I think we're getting more done together than we could apart. We bring different skills and assets to the table. But I don't think that's likely to happen naturally elsewhere for a whole bunch of reasons, not the least of which is sometimes there's sort of a power imbalance between lawyers and people with disabilities.

CURT: I am struggling with how the P&A system can support self-advocates. I think there are a lot ways that we can help them, such as with training and resources, without losing our unique role, which is the legal part. I'm getting a little whipsawed by folks who are saying the P&As need to do more, take more resources and give them to self-advocates. Yet at the same time, it's been so hard to get and keep precious dollars for legal resources. We're the only game in town; we're the only organizations that have access to institutions. So we're struggling with how we please two masters. Congress would say, yes, P&As should be doing other things than litigation, yet if we don't litigate who else is there?

ANDY: The protection and advocacy agencies have been creative in growing their capacities, and I'm sure there are exceptions, but from my perspective these agencies have been proactive in holding themselves accountable to peer reviews and other oversight processes, more so than other disability-run organizations, such as independent living centers. So to the extent that more money is going to flow to CILs and parent-training and information centers which is the third part of advocacy team, I would like to see more accountability on their end. I strongly support the importance of having more money flowing to disability- run organizations, but I think we need to increase the professionalism and accountability of our disability-run grantees as we increase their funding. CURT: I think you're absolutely right. We always thought we were so vulnerable because we're at the legal end of the spectrum, that if we weren't well-managed and accountable financially, that's where they would get us, they'd nail us there, not our legal work. And so in a lot of ways we have been a little bit more self-policing than some of the other groups out there.

ANDY: And you're also answering to eight different federal agencies.

CURT: With eight different funding sources. Given our kind of unique privilege, we have an extra obligation to make sure our programs are well run.

CLOSING THOUGHTS (Listen/download audio - 0.8 mb)

ZENA: As we wrap up, are there any final thoughts that you want to bring forward on the overall state of the disability rights movement or specific issues of concern?

ANDY: I would like to see the disability agenda reframed in terms of values. The voters in this country right now seem to like talking about values, and it's an opportunity to achieve better outcomes over the next 10 or 20 years. I'm particularly concerned about how science and technology can be used to eliminate people with disabilities. There's a resurgent eugenics movement within the sciences, and I don't think the disability-rights movement is paying enough attention to it. New genetic technologies are likely to do a lot more harm to people with genetic disabilities than they are to do good. To respond to this trend, we need to reframe everything we're trying to do in terms of values.

TAMAR: In the disability rights movement, terminology can lead to confusion and division. The whole discussion of whether to say "people with disabilities" or "disabled people," for instance, is quite a different discussion for developmental disabilities versus physical disabilities. The term "mental retardation" is now under scrutiny too. I think if different disability groups work together, terminology can be a common starting point - similar to the issues of mainstreaming, inclusion, and disability identity and whether people are the same or different. It could be a basis for a positive philosophical discussion.

MARCA: I think that, collectively, we're all saying the same thing within our own cultural contexts. In those moments when I'm feeling down about how far we have to go, what lifts me so much is the recognition that the ripple effect of our work is really beginning to take hold around the world. There are pockets of activists popping up in every country. I just feel like, when we reframe our situation and begin to get involved, we've only just begun to see the power of disabled people.

For complete audio of President's Roundtable visit the Equalizer Online Edition's Roundtable Audio page.

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