An Interview

A Discussion with Judy Heumann on Independent Living

Interview Table of Contents

The need for the independent living movement
What are independent living and the independent living movement?
Rights for people with disabilities
How the term independent living developed
Who made and started the first Center for Independent Living?
The independent living movement in our country
How Judy got involved in the independent living movement
How Judy became an activist in the disability rights movement
What makes Disabled in Action different
Types of activities involving Disabled In Action
Current status of the independent living movement
Growth of the independent living movement
Future challenges for independent living

Soon after Judy Heumann left her position as the Assistant Secretary at the Office of Special Education and Research Services at the United States Department of Education, we sat down at her Washington, DC apartment with her to discuss independent living.

The depths of discrimination against disabled people are very profound and they don’t get removed easily and because so many people have had such limited exposure to actually being with disabled people in a meaningful way, that we have a lot more work to do in order to really transform society.

Judy spoke openly about what she had to deal with as a child with a disability. We asked her about the need for the independent living movement.

What I was learning as I was growing up and things that my parents couldn’t directly experience because they didn’t have disabilities themselves. I was feeling the effect of the lack of exposure in our society, that’s lack of exposure from disabled people being integrated in the community and what that was really resulting in was not only people treating me differently, and talking to me differently, acting differently towards me, but it was also resulting in many barriers that were placed before myself and the millions of other disabled children, and adults, that lived in the United States and the world at the time.

Because people’s vision of a society did not include those of us who had different types of disabilities being equal members of society and they did not view our lack of equality as a problem.

Because, I think, in many cases, people viewed disabled people as people who needed assistance, who needed people to help us and did not really think about us as having the same goals and aspirations as other people.

What are independent living and the independent living movement?

Independent living is allowing people to live their lives the way they want to live their lives where disability is not a handicap for them. And so, to me, the independent living movement is really all about a disability rights, disability control movement, where we are looking at every aspect of what needs to be changed in order to allow people to live their lives where disability isn’t a handicap and I think you know we have the centers as one component of what goes on with the independent living movement, disability rights movement. I call it many times the independent living disability rights movement, because to me they are part of the same.

We cannot have an effective disability rights movement if it isn’t looking at what we call, in this country, the independent living movement.

After hearing about the barriers that Judy met as a child with a disability we asked her about the need for disability rights and for the people with disabilities to be active in the movement.

That’s also one of the important parts of the independent living movement, that we see ourselves as being a part of society and I talk about independent living a lot as saying, “coming together to go apart.” It is the ability to come together as disabled people and be supportive of each other and really articulate what the problems are and what the solutions to those problems are and then work on removing the barriers. So it is a rights movement. Independent living services in isolation are of very little benefit. I know some centers that do very few services and mainly do what they consider to be advocacy. I really do believe that the combination is most effective.

With independent living and disability rights movement as part of the larger cause of human rights we asked Judy how the term independent living developed

One point that I think is important to look at is that the term independent living is not a term that is used universally. There is a different term that is used in Germany and we need to get it. I don’t remember it at the moment. The Latino community, or the Latin community, definitely speaks about not wanting to use the word independent living, because it, to many people, connotes doing things alone and in many cultures the focus is not doing things alone. Would we have known and thought about all those things when these words were just starting, maybe the word wouldn’t be independent living, because I think the concept never was people doing things alone, but the concept of independent living was really more predicated on what I define it as; directing people to do for me what I would be able to do if I didn’t have a disability.

We wanted to know who made and started the first Center for Independent Living?

Ed Roberts is one of the people that anybody who knows history thinks about when you talk about independent living, I mean Independent Living Movement. Ed, who had polio and was a respirator user and became disabled when he was 14 years old, who lived in California, and then when he went to go to school at the University of California at Berkeley, wanted to live at the university, but they’d never had anybody with a significant physical disability living on campus. So they set up a program in the hospital, you know the medical unit on campus, and that’s where Ed lived and that’s where a number of other disabled people lived and they started a disabled students program at Berkeley.

Now the disabled students program at Berkeley was certainly not the first disabled students program around the country, but it was a different type of disabled students program because it did more than just help people through the admissions process and it did more than just help people register for classes.

And while other campuses also provided some services, I think one of the differences between the Berkeley disabled student program was the fact that it had a very strong advocacy prospective. So it did wheelchair repair, it did personal assistance services referrals, it helped people in finding places to live, but it also did a lot of advocacy around benefits counseling, helped people learn about if they were eligible for SSI and if they were eligible for a program in California called In Home Supportive Services, which was personal assistance services. It helped people learn about their rights and it helped advocate the people who were having difficulty getting services benefit programs outside of the university.

So I think that was one of the things that made the disabled students program different and what then happened was that you had other disabled people who were active in the disabled students program or who were hearing, in the Bay area of California, what the disabled students program was doing and wanted to be able to use some of the same services that the university was providing. But they couldn’t because they were only for students and that’s really how the Berkeley Center started to come about was looking at what disabled people in the community wanted and having to ultimately set up an organization which was not a part of the University and mirrored many of the services that the University provided but went beyond that because the University was only serving people who were students. Which meant that you had an academically - a high academic performing group of people.

When you get out in the community you really begin to deal with people, some of whom had not gone to high school, some of whom had cognitive disabilities, might not have ever even graduated from high school let alone gone to college and people who might have been illiterate and people who were not really advantaged as the UC Berkeley student would have been and I think that was very important.

People like Phil Draper, who was one of the real core people in setting up the disabled students program. I am not even sure if he was a high school graduate but he certainly didn’t go to college. He didn’t come from Berkeley; he came from an area called Vallejo. He was injured in a car crash when he was drinking and he lived in a nursing home for a good number of years and then became actively involved in helping to formulate the CIL. John Hessler, who had been the head of the disabled students program. He was certainly one of the leading people. Dick Santos, Hal Zukas, Jan Mc Quin, Mary Lester, Joan Leon, Zona Roberts.

With Berkeley emerging as a leader in the independent living movement we asked Judy what else was going on in the rest of the country.

Certainly in Michigan, Don Galvin, and in Massachusetts, Russ O’Connell, both of whom were state directors of rehab, both of whom were supporting the development of those programs. Fred Fay, who was very involved in the beginning of the BCIL program. Gerben DeJong, who was very involved with the development of the BCIL program, the work that was going on at Tufts.

I think those three states and the work that was happening was very critical. New York came in after those three states had started moving forward. I think one of the other very important parts about when looking at milestones, and of course put the 504 demonstrations in there in ‘97, and the other work that was going on in California where we were fighting with the state on getting them to implement policy for accessible transportation and things of that nature.

Every state has some of that going on, not everybody, but many. But then in ‘78 and ‘79 is when we were also looking at the need to get national legislation.

As a member of organizations and people working towards disability rights groups, we asked Judy what milestones could attribute for centers of independent living.

A lot of individual accomplishments, I think. We worked on legislation, certainly the work we did on the Individuals with Disabilities Education Act I think was very important, the work we did on the Reauthorization of the Rehab Act, some of the work that we did through the National Institute on Disabilities and Rehabilitation Research particularly in areas like technology, the development or the strengthening of the section 508 regulations which makes it incumbent upon the government to procure accessible technology. I think those are some of the individual landmark activities.

If we are looking at just around independent living, the building independent living centers, then I think probably you’d have the first piece of legislation passed in California to fund centers, you’d then have the passage of the money for independent living through the Rehab Act of ‘78, you certainly had the use of innovation and expansion grant money that was being used in California, Michigan and Massachusetts. That wasn’t a separate piece of legislation but it was a milestone inasmuch as three state directors agreed even though some people were screaming that you couldn’t do it, to use rehab dollars to help set up programs.

I think it showed, at that point too, that there was, that not all state agencies were as narrow in vision as others; some were very outwardly oriented and really recognized the importance of the creation of helping to support the creation of grass roots organizations that were run by disabled people and gave legitimacy and voice to the issues for disabled people.

I think laws like 504, the passage of 504 and the rehab act of ‘73 and the development of those regulations and the fact that the centers in some parts of the country and ACCD and other organizations fought so hard for those regulations to become a reality, I think that was very important because after the 504 regulations became a reality there was also, I think it was about 5 million dollars that was put out competitively to train disabled people and beneficiaries of federal money and what 504 was all about. It helped the development of DREDF.

DREDF was originally started by the Berkeley Center. My administrative assistant and I wrote a CETA grant to start a paralegal program at the center because we could not get legal representation for many of the issues that we needed and we felt well if we could start our own program then at least we could be training others at the same time as well as representing and dealing with legal issues that needed to be dealt with.

People like Bob Funk, Mary Lou Breslin, Arlene Mayerson and Diane Lipton, who eventually moved this paralegal program from CIL program and Pat Right into becoming DREDF, which is now, you know, the national disability legal center. I think there are probably other organizations that have spawned from local centers either are part of the centers or who have developed separately.

Other milestones certainly would be the work of the Americans with Disabilities Act, which started in the mid-1980s with the passage in 1990. The work that had been done by groups like the World Institute on Disability and ADAPT I mean the creation of ADAPT in the late ’70s early ’80s I think was very important in really being very anti-establishment grass roots group fighting for the expansion of transit rights and now community living and personal assistance services.

We asked Judy how she got involved in the independent living movement.

When I went to segregated camps one of the problems was that the camps were segregated, one of the positive things were that when I was at camp with other disabled kids we got to begin to be able to do some thinking and talking and as I was saying earlier, organizing thinking about how we would organize.

When I got to college basically I chose to go to a school that was a small school; Long Island University in Brooklyn on Flatbush Avenue, and I went to a small school because it was easier to get around. It was like literally one city block but the school itself was really pretty inaccessible. There were steps into the dormitory; there was a step into the bathroom.

In all my days I have never really seen a building where there was a step into the bathroom but on every floor of the dorm rooms there was a step into the bathroom and so it really became incumbent on all of us all of us with disabilities to begin to look at what we needed to do in order to deal with some of these problems and there were many other problems. But we began to work on getting a disabled students program together which we were successful in getting setup towards the end of my being at college but again a lot of the work that we were slowly beginning to do was to get disability integrated more into things that were happening at the university.

I was in a sorority and then I ran for student government and I lost the first time I ran for student government and then I ran again and I won and I ran again and won again so for most of my junior year and all of my senior year I was in student government. That was very important for me because it allowed me; it required that I be out doing more work.

There was always, when I was younger, this real push-pull. There were things that I wanted to do but I felt very uncomfortable being exclusively with non-disabled people and because I felt that they treated me differently, very much like what I experienced when I first went to the department. I mean the experiences were very paralleled but on the other hand I was very interested in doing the work that student governments were doing at that time.

I also worked in the president’s office, which was helpful because I got to meet him and know him and get to know other people in senior leadership positions at the university and to try to talk to them about problems that were going on and work on solutions. So I think one of the accomplishments that we made by the time that I was leaving, or graduating, was that we did have a disabled students program that was set up.

Now the university is a pretty accessible university and there are ramps and lifts and they, the university, provides services to a broad range of disabled students. And that university has been particularly involved with issues affecting inner city youth which, I think, has been very helpful and some programs that I was involved with when I was there at the college when I went to the university looking at what I wanted to study.

Students going to college, in many cases, don’t know what they want to do so certainly disabled students aren’t any different than non-disabled students in that regard. But, at that time, in the 1960’s and ‘70’s, when you were going to go to a university and get supported by the department of rehabilitation, at least in New York and I don’t think it was much different any place else, really, what VR wanted you to be able to do was, if you said you wanted to be such and such they wanted to be able to see that other people who had the same type of job that you were interested in with a similar disability to yours.

So I was interested in being a teacher and what I learned was that there were no people who used wheelchairs who had been hired to teach in the entire New York City system who entered the system using a wheelchair. So my friend said to me, don’t tell VR that you want to be a teacher. Tell them you want to be a speech therapist because there were a lot of disabled women at that time who were becoming speech therapists.

So when I went to VR they gave me the usual intelligence test and the psychologist recommended that I become a social worker and my parents said, “She wants to be a speech therapist so you have to support her to be a speech therapist.” But of course what I really wanted to do was be a teacher. So I majored in Speech and I minored in Education and in the 60’s there was a real baby boom and they were needing a lot of teachers and they were allowing people to come in to teach who did not have the full number of courses in student teaching that they typically required and so I did no student teaching in the formal way but I knew that I had to have some experience in teaching.

So I worked in the reading clinic as a part of my speech therapy obligations and I set up an after school program with some friends where we tutored inner city kids who were having difficulty in school and I did different types of experiences like that so that I would, if I became a teacher, know a little bit about what a teacher was really about because the courses I was taking in school were all pedagogy; they were theory courses; they weren’t really teaching you how to teach and that, I think, really helped me as I moved forward in applying for my teacher credentials to at least feel like I had the ability to teach.

When I actually applied for my teaching credentials you had to take three exams, a written exam, an oral exam and a medical exam. All three of those exams were given in completely inaccessible buildings. So I had to be carried up 1 to 2 flights of stairs depending on where I had to go; I passed the oral exam and I passed the written exam but I failed the medical exam and the board wrote down that I failed because I couldn’t walk and so we sued and when I sued the Board of Ed that was the beginning of many things.

Particularly, I think for me, because I work with my friends who had disabilities and my family to really make a decision as to whether or not I was going to go forward to try and get this teaching credential because in essence what they were saying was I was a fire hazard. I couldn’t walk. What was I going to do, how was I going to get kids out of a classroom and it was very much what I experienced my whole life. It was other peoples’ perceptions of what I was or wasn’t able to do and there was my speech therapist in my elementary school had told me when I was in the fifth grade, be a speech therapist, you can get an degree and you can work in a hospital and that was really at best what peoples’ vision was for us.

So suing the Board of and getting that credential and actually teaching really helped me personally to make decisions and realize that, again, when you begin to push, push, push, in many cases you can beat the system.

How did she become an activist in the disability rights movement?

When I was going through this lawsuit with the Board of Education there was a lot of publicity that was going on around that lawsuit. What that resulted in was interviews for the NY Times, for the Today Show. There was basically publicity that was going on for an entire year. In some cases, many pieces in the paper, magazines, radio, TV, but at least one thing a month for a year.

When the first article appeared in the paper, in the New York Times, I started to get calls from people, letters were being written to me saying: I have someone in my family who is experiencing discrimination or I have a disability myself and these were some of the problems that I have been facing.

People would stop me on the street and talk to me about what was going on, and so I worked with some of the people that I knew at that time in New York; Bobbi Lynn, Denise McQuade, other people, to basically think about what were we going to do with all of this. We weren’t happy with a lot of the organizations in New York at that time because we felt that they were too singularly focused and weren’t cross disability.

So we were really interested in looking at creating something that had the influence of younger people more, that was more cross disability and that really dealt more with the issues that we had been discussing since we were kids. The transportation problems, the housing problems, the education problems, the employment problems, the effect of the telephone on our lives, all of those; the sheltered workshops, travel, all of those issues were things that we wanted to deal with.

We didn’t want to just deal with transportation or just deal with architectural barriers. So we took the letters and phone numbers that we had gotten from people who had been calling and writing and we got a room at Long Island University, I believe it was in February 1972, I think, and we invited people to come to this meeting and about 80 people came which was really, at that time, a lot of people.

So we set up an organization that was originally called Handicapped in Action. I hated that name and so did a couple of us. So we lobbied for the first week to change the name. We lobbied that handicapped was a beggar’s term and how could we, as a new organization, be calling ourselves Handicapped in Action and we changed the name to Disabled in Action.

We asked what made Disabled in Action different.

I think DIA was a very important organization at the time because it was cross disability, it did deal with multiple issues, it was a political activist organization, made no bones about it, wasn’t shy about it. Really felt that we had to take what we considered the anger and oppression that we were experiencing as disabled people and not sit around and complain about it.

But basically really create an agenda for change and to work collaboratively with other people and other organizations. I think that was a very strong premise of the organization but we really felt that we wanted to be thoughtful and thorough in any of the work that we were doing but we didn’t want to be daunted.

What types of activities did DIA get involved with?

I remember that one of the first things that we were involved with, well it wasn’t the first but over the course of the first couple of years; we thought, “Let’s go to the President’s Committee.” They had a meeting in DC; we knew that there were a lot of people who came to that meeting. It would be an opportunity for us to meet up with other people at the national level and to expose people to our way of doing business and the President’s Committee wouldn’t give us a room because we were already being labeled as; we were being labeled as communists, as malcontents, as complainers.

So we decided okay, what are we going to do to get that room, because all they had to say was that we couldn’t get the room and it made it this big issue. So we wrote to Congressman Biaggi and he wrote to the President’s Committee and told them to give us a room, meaning a room that we could hold meetings in. So a bunch of us went down there and the President’s Committee meetings, which don’t happen anymore, but at that time, I think, were an effective way for disabled people to meet each other from across the country.

Because it was in one hotel, one site, if you could get to the meeting, you had a lot of opportunities to do networking and it was also a great playing field. So we did what DIA was involved in, many different things; deaf products, the workshops that we would hold and the discussions that we would have, I believe we led two walkouts at the opening sessions when one of the Nixon girls was there. We left with billboards and chanting because we were opposing Nixon and the work that he was doing because he was opposing independent living at that point and he was basically not standing for things that we believed were important in order to remove barriers and help us become integrated members of society.

We had a march in Washington from the Hilton over to the Capitol, there were I guess 100 to 200 people for the first march that we did. But the next year United Cerebral Palsy at the national level, through their Connecticut affiliate with Eunice Fiorito, who was the head of the mayor’s office on disability in New York City at that time and DIA and other groups organized a national demonstration which was a march where we stayed overnight at the Lincoln Memorial, because the Memorial wasn’t accessible, and that demonstration was great in DC, because, again, it was cross disability and cross issue.

DIA, I would say at that time, was clearly the most militant organization in the country because we were, as I said, I think we were thoughtful. We planned well but we basically put down markers. These were the things that we wanted to achieve and if something got in our way from doing that we would then look at what we needed to do further.

So the demonstrations that we had in Manhattan, 4 days before Nixon’s reelection in 1972, where we joined up with a group of people from Willowbrook that had been working on closing Willowbrook down.

So when Nixon was running for reelection he had also vetoed the rehabilitation act, which had the first language in there on independent living, but it wasn’t on independent living centers, quite frankly I don’t even know where the language came from. But it really would have been the precursor to the legislation that was passed in the latter part of the 70’s for centers. But he vetoed the legislation because of that and he vetoed the legislation because of the civil rights provisions in the law.

So four days before the election, a group of people from DIA, we organized the demonstration and we had started to do work with a group of people who were working on closing down Willowbrook State Schools for the, “mentally retarded on Staten Island”, and we decided we were going to go to the city. We were going to go to the city and have a demonstration and we wanted to go someplace where we would have exposure.

So we went to the federal building. Well the federal building, as it turned out, was in this little area, or in this area of Manhattan probably, there aren’t many areas like it, where there was hardly any traffic in the middle of the day. We had come there, we had organized this demonstration with also another group called Pride and we had brought a coffin and we had great flyers and the flyers were a coffin and we basically had on the flyers the death of and so civil rights and all these other words that we had written on the flyers. They were great. A guy named Ronnie had put them together.

Well here we were in Manhattan at the federal building and no one could have cared less about the fact that we were there. Because there was nobody there, I mean people went into the building but there was no traffic, there was no one to see us so we thought okay we will go sit down and block traffic. So we did but again it didn’t really matter because there weren’t a lot of cars coming through so the police, who had been sent there to deal with us, said, you know, “what do you want?” So we said, “Where’s Nixon’s headquarters.” They told us where it was so we got back in to whatever we had come up in; vans, transportation services cars, and we drove to Nixon headquarters, which was on Madison Avenue.

So then we thought, “Okay, what are going to do, people are kind of impromptu, what are we going to do to kind of deal with this so we get some attention?” So we decided, we’ll sit down in Madison Avenue. So we did, about 4:30 in the afternoon, 50 people sat down. First we did a circle and cut off all 4 streets, but it was a little bit too scary because some of the trucks were very pissed off. So we backed off and only cut off one, but it was still Madison Avenue, so [the show] Rambling with Gambling was on [the] WOR [radio station], they had the worly burly or the worly bird that would give information about traffic and what was basically going out was that the city had been shut down by this group of cruel people who were sitting in Madison Avenue.

So they wanted to know why we were there. We said we wanted a meeting with President Nixon to talk to him about what we were upset about. So we wanted to speak to someone from his office so they sent someone down from his office and we said, “We want a meeting with the president” and we were not going to move until we knew we were going to have a meeting with the president and he left going, “They’re crazy, they’re crazy.” He just walked away.

Well I guess we were there for about an hour, and then the traffic was subsiding; we kind of made our point. So we decided we’d go into Nixon headquarters, so we went into Nixon headquarters and we took their offices over.

But we didn’t get a lot of publicity; we had no Vietnam vets with us. So we decided that we would come back the day before election and we would do everything we could to get Vietnam vets. So we called the McGovern campaign and we got a couple of vets, a guy named Bobby Muller, who’s now very involved in land mine removal and set up a national group called Vietnam Veterans of America.

This time we went to Times Square and we marched against the traffic on Times Square, back up to Nixon headquarters. Took Nixon headquarters over and actually shut them down the day before the election. Shut the headquarters down about, I guess, 5, 6, 7 o’clock at night, and Nixon did not meet with us, did not talk with us, but we got publicity because we had Vietnam vets.

The other thing that was going on at that time in New York was a number of police officers had been shot and so it turned out that some of the police that were actually with us were friends of people who had been injured and so when we talked about housing, transportation, health care, employment, these guys all got it. Because they were having to transport their friends to rehab services and they were having to deal with many of the issues that we were talking about and I remember one of the police saying to me, “You keep it up because this is great.”

What was happening in the independent living movement at this time?

There were a number of things that were going on as IL began to expand in the United States. It was taking a very large country, but getting disabled people from around the country who were hearing about this organization at Berkeley and there was certainly the Boston Center for Independent Living.
x There was a center in Michigan, their CIL was able to get a number of federal grants, one of which provided an opportunity for people who were involved in IL at that time to come together for a conference for a couple of days and at the same time we started learning, looking more at what was going on internationally. Not consciously so much, as gradually people in other countries started hearing more about what was going on in California. I think the demonstrations in 1977, which were organized by the American Coalition of Citizens with Disabilities, but the Bay area was probably the most active place around the demonstrations. That’s where there was a takeover of the federal building for 27 days. There were about 150 people who occupied the building for those days and that brought all kinds of media attention, both nationally and internationally. There was media there from France and TASS, you know the Russian controlled media came over to see what was going on and so there was lots and lots of publicity at that time which really helped not only put the word forward about what was going on in the Bay area, because at this point in California there was the Berkeley center and 10 other centers. There were other centers that had started in Michigan and in California, but in, I’m sorry, and in Massachusetts. So you had Massachusetts, Michigan and California that were the leaders at that point. New York started getting involved in IL, I think it was ‘77, ‘78, ‘79, but I think then when it started in New York and California, around the same time I think we saw state legislation being passed to provide state dollars as well as the federal legislation that had been passed to provide funding for 10 independent living centers to be established across the country and then, because this movement was really developing all over the world, is what you really saw was things going on in Canada, things going on in Europe, things going on in Asia, and in Africa and Latin America. I think in the developing countries differently than what was necessarily going on here, but definitely disability rights organizations that were starting. When the UN declared 1980, or 1981, as the UN year of the disabled that was the year after the disabled peoples international had been started in Canada and that resulted in for the Berkeley center and for the movement in the United States, a lot more publicity. That’s when it really burgeoned, you know, the Japanese were over doing programs, the CBC from Canada was doing programming, “We Won’t Go Away” was done by the British. I think it was those ten years and for myself it was also very much that I had really begun to see that the policies that existed in other countries were the kind of policies that I felt we needed here; so health care policies that had no people uninsured were things that people didn’t know about here. Policies that provided personal assistance services, services that were more oriented for the community in England and Scandinavian countries and Germany albeit their programs might not have been as big. There was a different; there was a different expectation from government, which I was really realizing. In the U.S. you’ve always had this kind of anti-government approach. In many other countries there was an expectation that tax money went to benefit people, and what the independent living movement was doing was really grabbing on to that and beginning to be more demanding of their governments to be spending money, in some cases which they were already spending. But spending it in a different way, more along the lines of what we were doing here. The linkages, I think, that started to be made between the U.S. and the Japanese and the U.S. and Europe, were very much linked around our civil rights bearing views and our more aggressive approaches. So things like demonstrations and working on legislation, but really I think our demonstrations and also what we were calling peer support. Those were things that people were particularly intrigued about and you started to see in the early 80’s, throughout the 80’s, disabled people who were coming from other countries to be involved first at the Center for Independent Living. Actually there was a program that was started in Japan by a guy called Goshkan, who has a company called Donuts and he put money in at first for ten years to bring ten disabled people a year to the United States to learn about independent living.

Independent living was growing across the country. Was this happening to sustain the growth of the independent living movement?

You started to see the beginning of the formation of NCIL. There was a recognition that there needed to be a national organization that could not only help all of the existing centers work more effectively together, but also to be able to advocate for the need for more funding for more centers, but then to also become more of a voice for the grass roots movement. That would be looking at issues like implementation of 504 and at that point it wasn’t called ADA, but the need to get federal legislation that prohibited discrimination against disabled people in the private sector and to look at things like personal assistant services and basically to look at what needed to be done to continue to remove barriers.

So I think you know then you see the development of the 10 centers you see states putting money into development of more independent living centers. I think you know the Paraquad Center, which had started earlier also in St. Louis. I think Access Living certainly was a very important model because it came from; it was started at a rehab program and moved from a rehab program into being, you know, a freestanding disabled controlled organization.

To me, Access Living is a very interesting program to look at because they came from a well-endowed rehab center and I think they didn’t come as grass rootsy and I think the benefit for that was it was a very unique situation because of Henry Betts. Henry was very supportive of disability rights and believed that this organization should be spawned off from the rehab center.

But it also meant that they had contacts with people who had money and influence and I think it gave Access Living a level of legitimacy earlier on than many of the other programs got and I think the formation of NCIL was a very important development in the life of and evolution of the Disability Rights Independent Living Movement, or the Independent Living Disability Rights Movement. They had a strong ILRU and they were doing research and they were providing different kinds of support to programs around the country and Lex certainly, and Peg Nosic and those people down there were very involved.

I think what you saw was, as centers were being created, they began to be able to deal with some of the very fundamental local problems. Issues like curb cuts, things that were very, if curb cuts didn’t become a reality in communities, people couldn’t get across streets; looking at issues affecting blind people and deaf people and even the formation of those coalitions.

I mean in Berkeley, as we expanded to bring the deaf community in, that was another whole struggle because there was a deaf organization; they felt that what we were doing was inappropriate. We set up a committee of deaf people to help us look at what they wanted and what we could do in order to let the deaf community itself decide whether or not they wanted services from the center.

We asked Judy what she sees as future challenges for independent living.

Money is a critical part. The centers need to be generating more dollars both, I think, through the federal, state, county, and city government, but I also think we need to look more at what we could be doing to generate our own money.

You know, for example, employment, as I have been saying, is a very important issue. What are we really doing to facilitate disabled people getting jobs? Are we working with head hunter companies, have any of the centers set themselves up as headhunter companies that could really work with corporations to help them identify a locally, regionally, nationally people, because headhunting companies get paid fees. I think there are many opportunities out there, some of which are very much locally driven.

If you look at what has gone on in other countries, particularly developing countries, where there was, and is, no such thing as going to the state to get funding, many of these organizations have evolved by creating businesses where they make toys not sheltered workshop types of products but meaningful types of products that they sell where they get contracts with businesses to hire disabled people for integrated businesses where they run supermarkets and cafes where they are involved with activities that are a value to the community and they are run by disabled people. They employ disabled and non-disabled people in some cases but they’re money generating. I think we could do well to learn more about how we could do that ourselves.

Some of these things, I think, are very locally driven; being able to work with organizations that help small businesses start being able to look at doing assessments of needs in local communities to be able to generate dollars. I think those are things that we have to look at in a much more concrete way.

Certainly the states that have been getting Medicaid money to provide personal assistant services, some of those centers are getting large numbers of dollars and I think that’s a very creative way of generating money at the same time that you are providing a needed support for disabled people in the community and hopefully doing it from an IL perspective. So really pushing for the self directed approach and really listening to what it is disabled people say they need and helping them get what they need to get the best possible personal assistant services for themselves.

But I think, you know, there are pockets around the country of activities that centers are doing that are generating funds, wheelchair repair, van modification being a couple of the types you hear more commonly talked about; certainly some of the programs that are doing work with youth and generating grants or contracts from local educational authorities to do some work. I think that’s important, making them consulting businesses but I just think that if our movement is really going to have the breadth and the depth that it needs we have to be able to get more money to hire more people.

We need to be able, I think, to much more aggressively also be looking at how we integrate issues affecting disabled people into the broader society and I think that goes anywhere from making sure your battered women shelters and your substance abuse shelters and homeless shelters are accessible to people who have cognitive disabilities, who are deaf or blind or who have physical disabilities but I also think we need to be serving on boards.

We need to be serving on boards of other organizations in our community, non-profit and for profit. I think we desperately need disabled people around for profit boards because for-profit organizations can have great influence on what is going on in the local community, the state and the country and if the approach is that we need to be serving on all types of boards then we need to be doing that because we need to be able to get the issues and needs of disabled people understood because the bottom line is, we are not trying to set up a parallel system for disabled people. We are trying to set-up; we are trying to remove the barriers that prevent disabled people from benefiting from everything in society.

Some of the other big issues that we need to be looking at is there are still great disparities regarding disabled peoples’ access to technology. I think technology is playing an ever growing role of importance in the lives of everybody in the United States and around the world and the research that has come forward shows that many disabled people do not have access to technology and so that will limit employment opportunities. It will limit educational opportunities and it will limit life opportunities.

Education, I think, is something we have to pay a lot more attention to because for everybody in this country we can no longer look at education as something which is finished in high school or at college. We have to look at this whole concept of life-long learning and what we each need to do collectively and individually to define what we need to learn and to help that occur.

I think we are still very much struggling with the need for national health insurance programs, the need for national personal assistant services program. I think we’re still very much caught up in the quagmire of research projects that are demonstrating, for example, is self-directed personal assistant programs good, does it work, is it harmful?

More and more studies are being done that over and over again say it is good, it works, it’s empowering but we need to do another study because we haven’t been able to get our message effectively delivered into the hands of people who make policy. Which is why I think this employment link is so important because we have to be training disabled people who understand IL, who feel a commitment to the IL movement and who can get jobs in various places arguing for that perspective. I think you know it is clearly understood as women moved into the world of work and moved above the low paying jobs as people from different racial backgrounds move into companies and move into higher positions whether it’s a public or private sector.

The means of different constituencies get to be understood more clearly and that’s why I so fervently believe that we need to be working with kids, we need to make sure people understand the world of work in the future, we need to make sure they’re getting the kind of education they need, that people are getting into the community colleges and universities in order to get the education they need, we need to be making sure that once people meet the qualifications of jobs that they’re able to get those jobs.
  I always believed and still believe that the effectiveness of the movement is still emerging. I really felt from a very early age that we could make the changes that need to be made.

I think I get sad frequently when I see how difficult it is to make the kinds of in-depth changes that need to occur. It gets back to what we were talking about earlier when I was talking about when I first started my job, that you really, my job in the Department of Education, you really realized that there are so many layers that have to be influenced in so many different entities; government, private sector.

But then at the same time as we’re transforming society, disabled people have to continue to fight for their rights without allowing these barriers to get them down. I think you almost have to think of yourselves as a football player. I’m not a big sports person so my knowledge, it may be wrong but, you know, when you watch a football player’s practice, they have this thing where they run up against this piece of matting or they hit it and they try to move this thing on wheels and that’s the way I think a lot of what we’re doing is. We basically have to start getting up in the morning and going forward and maybe we’re not going to hit that but the likelihood is that we may hit that big obstacle and we can either decide to turn around and go home or we can decide to push it as hard as we can push it and move it as far as we can move it.

I think what’s very important today is that I think the quality of life of disabled people today is very different than the quality of life for disabled people 20, 30 years ago in as much as there are fewer physical barriers. So, you know, you can get up today in most places in the United States and if you live in an apartment building that has a ramp or an elevator or a house where you can get out, although there are still plenty of people who don’t live in those situations but you can get out of your house, you can go across the street.

If you’re blind or you’re deaf, you have psychiatric disability, cognitive disability, there are more opportunities today than there were 20, 30 years ago. But in saying that it still amazes me at how much further we still need to go.

How, when you look at work going on in Congress on legislation, for example, in personal assistance services or IDEA and services for kids with emotional disabilities or universities and what the universities are not doing in my mind to really remove barriers and to assure everybody that disabled people are being brought in to go to school and are brought in as faculty and we can just go on and on with these barriers that still exist so I think that we need to continue to diversify what we’re doing.

We need to continue to make sure that younger disabled people really understand history. They need to know the Justin Dart’s of the world, the Ed Roberts’ of the world, the leaders in their local community and state and national leaders over the last 10, 20, 30, 40, 50 years. They need to feel that knowing those names are as important as it is for women to know the Betty Friedans of the world, on and on and for people within the African community and the Native American community and the Latin American community to know their leaders.

It’s very important for disabled people to know our leaders and to understand what has gone on over the last couple of hundred years. We have to stop looking at every new success as being something that is independent of anything which preceded us because it isn’t. In my mind, it’s a chain event.

You know, the Senator Harkins of the world, the Bobby Silversteins of the world and these are just names that I keep thinking of as we’re talking. There are so many people who’ve been influential. I don’t know all the people around the country that have been influential. I try to know the people who are the people in the communities that I live in at the moment as well as others but I think we should expect that disabled people and their families have an understanding because I think it’s important to be able to look to the past because it allows you to look to the future with a greater belief that you can continue this.
  If the independent living movement is really doing its job, it’s reducing the unemployment rate, it’s increasing the education level, it’s facilitating the ability of disabled people through their sense of pride and dignity to be able to be integrated members of the community; holding meaningful and valuable jobs, running for school boards, running for city councils, running for county boards, running for state legislators and running for the federal legislative positions.

That’s really what we need to do and we need to be able to make sure that no person with a disability from any background is denied those opportunities because of their race or their language or their religion or their disability.

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