Interview with Ms. Judith E. Heumann
Date: November 22nd 2009
Interviewee: Ms. Judith E. Heumann, Director Department on Disability Services
Interviewer: Ms. Masako Okuhira, Japanese Society for Rehabilitation of Persons with Disabilities
Profile of Judith E. Heumann (Judy Heumann)
Heumann is one of the founders of Disabled in Action.
She helped develop legislation that became the Individuals with Disabilities Education Act in 1974, serving as a legislative assistant to the chairperson of the U.S. Senate Committee on Labor and Public Welfare. An early leader in the Independent Living Movement, she then moved to Berkeley where she served as deputy director of the Center for Independent Living. She co-founded World Institute on Disability. She was Assistant Secretary of the Office of Special Education and Rehabilitation Services at the US Department of Education from 1993 to 2001. She served as the World Bank Group's first Advisor on Disability and Development from 2002 to 2006. In 2010 she became the Special Advisor on Disability Rights for the US State Department under President Obama.
－We would like to introduce the history and the current situation of IL movement in the states, and the future direction you think it would be. I mean we want to upload your saying on our web site, so that many people can read it.
I would like to give some background to what was happening in the United States as the Disability Rights and Independent Living emerged.
There was extreme discrimination against African Americans across the United States. The discrimination was worst in the Southern part of the country but it existed across the country. African American children were denied the right to attend white schools and the education in their schools was as a rule inferior to the education in the white schools. People were not allowed to sit in the front of the bus, they had to use separate water fountains, separate bathrooms, were not allowed to sit in the same part of a restaurant and in some cases could not eat in the restaurant. The civil rights movement had been evolving with great progress being made in the 1940 – 60’s.
Lawsuits were working their way through the courts stating that separate but equal was not equal and that the schools had to become integrated. Finally, the Supreme Court ruled in Brown vs. the Board of Education that segregation in the schools would have to end. There were many years of fighting as this decision was implemented – violence – churches bombed, Federal police brought in to escort Black children into the White schools etc. People were killed like Dr. Martin Luther King and the Kennedy’s.
There were strikes against the buses in parts of the South when a woman named Rosa Parks refused to sit in the back of a bus and she was arrested. Black people stopped using the buses and walked everywhere.
The Women’s Movement, the Gray Panthers, the farm workers who were organizing Latinos who were picking vegetables and fruits and organized a lettuce boycott to have wages raised for the farm workers.
These are examples of what was happening in the US with other minority groups.
Civil rights legislation began to be passed by the US Congress granting civil rights to African Americans, Women and prohibiting various forms of discrimination including in the area of age.
The media now included radio, paper print and television. The media was covering these events and disabled people like me were watching and seeing how people working together were making a difference – it wasn’t easy – but with diligence, hard working committed and knowledgeable people things were changing.
The landscape of the US was changing for other minority groups but the legislation that was being passed did not include language to end discrimination against disabled people.
Our Civil Rights Movement had not yet been born. There were organizations representing different groups like the National Association of the Deaf, the National Federation of the Blind and the American Council of the Blind, United Cerebral Palsy, various veterans’ organizations but there was no cross disability movement that was fighting for the civil rights of all with disabilities.
Disabled students organizations were emerging on campuses in part because of the disabled veterans who were returning but non veterans began attending more of the universities with the support of these programs on campuses.
The charities were still collecting money to prevent and cure our disabilities. They were not marching with these movements. Parents were working to get us into schools but there was no legislation saying that disabled children were not only in segregated schools but millions were not in school at all and that segregation had to end.
Disabled people like me were watching and reading about the activities of these Movements. But the American public still saw us as cripples who were not able to contribute much. We had not gotten our own voice demanding equality. That would take time but began to emerge more rapidly in the late 60’s until today.
The Berkeley Disabled Students Services Program was probably the most innovative program for it’s time. Stated by disabled people who were being forced to live in the University Hospital these students got funding to set up an organization that not only was helping students get registered for school, but was also helping with securing housing, readers, wheelchair repair, personal assistants and then it began to get involved in helping students access state benefits to pay for personal assistant services and they began to work with other movements like with the Gray Panthers, the unions to fight to keep the personal services benefit program.
The Berkeley CIL was an out growth of the UC Berkeley DSSP. The University would not allow the DSSP to serve non students so people from the community and the DSSP worked together to set up CIL.
Ed Roberts was one of the strong leaders involved at UC Berkeley with the DSSP and the formation of the Berkeley CIL. He was a visionary who believed in the equality of all including himself and worked fighting to advance the movement.
－So did every university have it?
At that point, no. It was just starting. It was slowly starting. So if you look at University of Illinois they had one that started in the 50s. But if you compare the University of Illinois disabled student’s program to the Berkley disabled student program which started in the 60s, you see that the program started in Berkley was started by disabled people and it had a different model. But I think the important feature of the disabled student programs is that they recognized that some disabled students needed additional supports, the campuses were necessarily accessible and students could need anything from help registering for classes, to getting their books, to making universities more accessible. But one of very important parts of what started to live out, out of the disabled student programs, was what you can call disabled people beginning to work together. So it wasn’t peer support in a way the Japanese think about it, which is the training ,but it was peers, disabled people to disabled people, who were in more cases, attending universities, and some cases living at universities. Because some of the universities in the United States have dormitories and people were beginning to live in those dormitories. So that was one thing what was going on.
There also was the beginning, I want to say, I am really speaking from my knowledge base. I come to 62, so I am looking over what happened in my life time. But before I was born, there was also, like in New York, there was a disability movement there. There wasn’t like what you call independent living movement but there were disabled activists who were demonstrating during the depression about the needs disabled people to have jobs. So I think in this country at least, and I am sure others, disabled people working together on different issues started a while ago. The National Federation of the Deaf started in the 1800s and the blind organizations in the 1900s, but probably historically if you go back you’ll see more and the reason I speak about that, is because I think one of the reasons why we’ve seen more in the US than around the world, disability rights, is because of radio, television, newspapers, and the Internet, people now can and it really for the last 30, 40, 50 years, happen to be able to begin to learn more about what’s happening in the world. So in the United States what my friend and I were seeing was the development of the women’s movement, and of the movement to end discrimination based on race. So you had the civil, we call the civil rights movement led by many black leaders in the United States, but internationally many people think about Martin Luther King as the person. So you see the 50s, there were some measure lawsuits that were going to the Supreme Court from the black community basically suing because black children were not allow to go to the regular schools, they had to go to the black schools, and the education was inferior. So that was happening. And then there were demonstrations and there was a woman named Rosa Parks and she was an active American woman and she was a house cleaner. And one day she was, I think she was coming home from her job. And in those days if you were black you were allow to go on a bus, but you could not sit in front of bus. You had to sit at the back of the bus. So she said she was tired and she sat in front of bus. And they told her she couldn’t stay in front of bus. And she refused to get off. And that resulted in a very big strike, black people in South stop using the busses. So it had economical impact on the bus companies, because they were loosing money. And it also was showing the power of black community to be able to strike against discriminations. So at that time, that was becoming more part of the news, the paper, press, radio and television really started coming out in the late 1940 and 50s.
So when I was growing up, and started understand more about what was happening. Look about my self and I was meeting with other disabled people we were beginning to understand. Because when you were little, you don’t understand. You accept what there is because you don’t know anything different. But then when I started to meet other disabled people like when I was nine, ten, eleven years old, both in school, because I started go to the school when I was nine years old. And then I went to school only with the disabled children and then I also was going to the summer camps only with disabled kids. So you know we began slowly to talk about things, not just fun things, but I think as we got older. And we began to see that what our experience was different than our brothers and sisters. You know basic issues like my brothers went to the school they kept walk to. And I was not allowed to go to that school. That was probably the first thing that I started thinking about why I am not going to that school. And I think that was probably true for other people like me. Why we were not going to the same school as our brothers and sisters, and our neighbors. And then the summer, when I went out to the camp, for three weeks or four weeks, and as I got older go more time, it was an opportunity to speak with people, disabled people, not only about what the problems were or what the solutions were. So I think that we gradually started thinking these problems don’t have to exist. These problems exist because people don’t believe that I am not good enough person to be able to go to the same school with my brothers. We didn’t necessarily think about things like an electrical wheel chair. When I was young, there weren’t any electrical chairs. So most of us were like inventing things that were allowed us to do the certain things more independently. But we did start thinking practically. Why couldn’t there be a ramp on the corner of the streets? And why can they be making ramps into the schools, and making bathrooms that were wide enough to the schools? You know just practical kinds of things that we could know what could happen. I think once again that the disabled student’s programs were important because the school that I started going to the university did not have disabled student’s program when I started. But I was learning about other schools that have them.
And so it became important for my friends and I who went to this university called Long Island University in Brooklyn, we wanted to get the disabled student’s program started, because we thought ok, this will bring us together and had they had paid staff, and we could work and trying to make the campus more accessible. Because like the dormitory that I lived in, there were two steps into the dormitory. They had no ramp. I had to get carried up and down the steps all the time. And in the dormitory there was a step into the bathroom. So every time when I needed to go to the bathroom in the dormitory, somebody had to help me in and out. It was a big step. And there were many other problems. That was not a big university. But the same problems existed in different universities around the country. So you know what we were seeing what other groups were doing, the civil rights movement as I said, they were going to the court, they were having marches, they were having demonstrations, and they were being arrested.
There were slow changes. In 1950s the particular law suit around education the black children, they won. And more changes didn’t happen right away. It still became the low for the country and then you know they had the very big civil rights march in 1963. There were thousands of thousands, hundreds of thousands of people who came to Washington to march on Washington. And all of this you could see on television, and read on newspapers and hear about on the radio. So, for myself that was very important because we started seeing why can’t we do what the other people were doing. And we, in different parts of the country, we started setting up local organizations. There were many veterans’ organizations. And there were blind groups and there were deaf groups. And there were organizations, like in California there was a group called the California Association for the Physical Handicapped that was across the states. But it dealt pretty much with issues for the physical handicapped. In New York, there were lots of organizations but they dealt either with the specific group of people or on a specific issue, like architecture barriers. And some of us were interested in having organization that didn’t represent one group of people and didn’t speak to one problem. The point is that there were many changes that were going on, many critical movements were becoming more visible. It was more publicity and visibility of the different of problems that people were facing in the poor communities, in the women’s community. Then also there was the anti war movement that was going on in the 60s and 70s against the Vietnam War. So, it was a very turbulent time and from my prospective, we got every people powered to trying to make change. So that the disabled student’s programs began to start and then these other well-care community groups like the one we set it up in New York City, called Disabled in Action. Disabled in Action was started at in early 1970s after I failed my lawsuit against the board of education when I was trying to become a teacher. So I sued the board of education, the lawsuit might have happened. Anyway I think the lawsuit and DIA was set up.
－What is DIA?
Disabled in Action. Disabled in Action started around same time. And DIA was different. Disabled in Action was a different type of organization because it wasn’t focusing on one issue for one disability group. So it was cross-disability and namely physically disabled people in it, but the intent was that would be cross-disability, and that we addressed issues, not just for people with physical disabilities. And that we were not just dealing with issues of physical access but also dealt with issues of the media, employment, sheltered workshops, problems of the sheltered workshops, posing things like the telephones, I don’t know if you have them in Japan, telephones, Jerry Lewis muscular dystrophy Telethon. It would be once a year for twenty four hours, they will raise money on television to help cure people with cerebral palsy or muscular dystrophy. We call them Telethon.
－Oh, we do have it.
We didn’t like them and so the Disabled in Action. But the Disabled in Action were the first cross-disability, cross-issue organization. And it just was doing advocacy, it did no direct services. Worked on advocacy and policy but if you looked at what was beginning to happen in Barkley with the disabled student’s program. Their disabled student’s program had wheelchair repair as an example. And that was very important because people were beginning to get motorized wheelchairs or they had manual wheelchairs, and if the chairs broke, people could be without chairs for weeks at the time. But if they had the wheelchair repair program on campus, then people’s chairs picked up and fixed very quickly. They helped people who were getting benefits from the government, so that the students for getting help to either apply for the benefits or if there was a problem, they would help them. As well as helping people resister for school, but the disabled student’s program in Barkley really people would come to the office, they hang out together, they were becoming friends, they were working on making changes in the campus. And then some of the people who lived in the community in Barkley wanted to start using some of the university services. They also had attendant for all. So if you were student, and you use an attendant, you could go to the disabled student’s program, get the list of names of people and hire your attendant. But they didn’t have anything like that in a community. It was just for students. So that’s when CIL came about. Sorry I will call Barkley Physically Disabled Student’s Program as PDSP. Except the PDSP was never just really for the physically disabled, kind of started that way but then they started providing services for blind students that the blind person was staff and the director was the quadriplegic. So then some of the people from the campus Ed Roberts, John Hustler, Larry Discamp, number of other people, Heltz Keith, and people like Feld Reiper, began to work on starting a community organization, which became known as the Barkley Center for Independent Living. And the Barkley Center and the university program were very similar. You know they were providing wheelchair repair, personal assistance, benefits counseling, housing assistance, so people who were trying to move into the community or move to another place in the community, they began to help people, they looked for apartments that were they all board, try to help people get those apartments make accommodations. And they also started to work for benefits, so at that time there were big issues around the benefits, they were trying to cut the benefits in California. So then the physically disabled and elderly began to work together.
－Like SSIO.
For attendants. Also the SSI is federal money and state money. So, yes they were also trying to get state share increase. What was different about the Barkley Center and the Disabled in Action was I think Disabled in Action in New York was very strong activist group, we had more demonstration, we were dealing on a broad issues, but because we weren’t doing any direct services, it made also difficult for people to really get out of their homes and participate. But I think the common thread that existed between what was going on in Barkley and in New York, and other programs that the disabled student’s programs and community organizations is this what I called “bubbling up,” if you think about like a soup or liquid, you have a low flame on it and it gets little warmer and warmer, then its get start little bubble, then its get big bubble, so goes from cold water to warm water, to simmering to boiling. So I think that’s really one way to think about, you know, disabled people began to say what is happening is not acceptable. And what is happening isn’t going to change if we leave it to non-disabled people to be the primary advocates, because even if they were good, they don’t live the problem everyday. Everyday they leave office and they go home, they don’t have it anymore unless they have children. So you also saw a beginning really in the late 60s and 70s of organizations like the CILs that said the board of directors had to be more than 50 % controlled by disabled people. That was something that slowly happening. And that was very controversial. Because people would say “non-disabled people are your friends and they’re trying to help you” and we would say “that’s fine, but women’s organization are not run by men.” And it’s not saying that men can’t be supportive of women’s issues, but women need to lead the movement. You can have white people involve in civil rights movement but black people that time they had to be the spokesperson in these organizations. They have to be the ones identifying and working on the problems. Or it doesn’t give that legitimacy and the disability. If the disabled people aren’t speaking for ourselves, it continues to propitiate the thought that we are not capable of speaking for ourselves like any other minority groups. People are talked to believe that minority groups are not equal to the majority group. And the reason why women need to be spoken for by men is because all the little women they are not smart enough. They don’t understand money, they don’t understand this, and they don’t understand that. You can’t give them right to vote because they are not smart enough be able to exercise their right to vote. And really if you think about the changes that happened in Japan and U.S. in the last hundred years, it’s very significant. Time more than the previous hundred years as far as equality is concerned for different populations of people. Not to say that there are still lots of discriminations but did much more of evolution and revolution in some way. So in the United States, what we begin to see was when the Barkley CIL started that there is a program starting in Finland exactly the same.
－In Finland?
Yeah, Könkkölä Kalle, exactly the same model.
－At the same time?
Exactly. But nobody knew each other. And they didn’t know each other for a couple of years. I happen to meet Kalle, because I was traveling for Summer Rehab International, and I went to Norway for summer youth camp. And there were disabled people from different parts of the world and Kalle was there, and he was setting up an organization called Threshold. That’s how they call and they still are called Threshold. Then the Barkley Center started, there was a different model program in Boston CIL. And then you could start seeing some of the big differences. The Boston CIL and Barkley CIL had similar programs but the Barkley CIL never ever supported segregating housing. Never, never owned any property, never suggested that they owned property, it was always trying to make things accessible in the community, to remove the barriers. The Boston CIL started out with the residential program people lived there for cretin period of time, they get training and they eventually go into the community, we really opposed to that. I left New York in 1973 to come to graduate school, the CIL Barkley was just starting the first year.
－Oh, thats why you came to Barkley.
I went to Barkley for two reasons. Ed Roberts was recruiting a disabled, Ed Roberts had become friends for the couple of professors that UC Barkley in two different programs. One in the school of Public Health, the other is the school of city of regional planning. And they were looking to bring some disabled students or disabled people to Barkley so that they could become a part of University and work become the board of CIL Barkley. So when I was accepted into the school of Public Health, I went on the board of directors of CIL right away. So I was invited to CIL from 1973 and until 1993, twenty years. First on a board, then a staff, then on a board. One of the things was very exciting about the CIL program was it was also cross-disability although primarily physically disabled and blind people. I have started doing work with deaf people, because when I went to the camp, there were deaf people in my summer program. And we weren’t really serving people with intellectual disabilities. I meant to help this disability. So you had the Barkley model, the Boston model and then you had like the Disabled in Action that the disabled student’s program. So you could really see the things that happening all over the country. Slowly the Barkley CIL model really began to get attention. Disabled people started hearing about it. When Ed Roberts went, Ronald Reagan was no longer the governor, and Cherry Brown the keen governor, Ed got appointed to be the director of the State Agency, called that the Department of Rehabilitation Services. And he was able because now he worked for State Government, and he received money from the Federal Government to provide the services to help the disabled people to find jobs. He used the some of money to start more CILs so when Ed became the head of the Department of Rehabilitation, he used money to start, I believe, nine other CILs. And CIL had also started to apply for money from different places. And it had gotten money from the Federal Government to do a National Conference to talk about independent Living. And it was also doing a research project on what affect was this new model empowerment services having on the lives of disabled people. So between like 1972 and 1975 or 1976, you began to see the development of centers in the U.S., there was a program in Boston, then Ed became friends with the Director in Michigan of the Department of Rehabilitation and he started a Center for Independent Living in Michigan. The Barkley center and the Boston center started around the same time, similar principles, and some different approaches. But basically are from historical perspectives similar. Then I worked in Washington,
－When?
From 1974 through 1975, for a year and half. I worked for a senator. I went to Barkley, went graduate school, got on a board of CIL, and stayed in school for one year. Then I had to do a placement I had to get internship. I got a job in Washington working for the senator in the area of disability. So I was working with people who were working on section five or four, which was one of the first Anti-discrimination Laws, they were working on the education law, which was called the Education for All Handicapped Children Act at that time, and I then became more involve nationally, I was learning about the congress, because I was working there, I was involved with people in helping set up the American Association for Citizens with Disabilities and also in the 70s before I came to California, I’ve been very involved, I was President of Disabled in Action, and we were very melted group. So we had demonstration in New York, we organized the demonstrations in Washington DC. When I came back from California in 1976, there were ten Centers for Independent Living, and there were few centers around the country. This conference that CIL had gotten money for on independent Living had happened. So we started in California to try to get registration that would fund the CILs. And we were able to do that in 1977, I believe 76 and 77. At the same time, we were working with the Federal Government to try to get the Federal Government to put language into the federal piece of registration that would help set up Center for Independent Living across the United States. So then I believe that was 1978 when there was money to start ten centers, Lex’s program was one of those centers. And Lex Daglas program in St. Luis, Mark Bristelle’s program in Chicago, and you saw in the 1970s actually in California there were more than ten centers. Started with ten centers there they got the registrations, funding from the State Government, so then more centers started. And the Illinois started the centers. In Chicago doing more centers and in New York started more centers and Massachusetts started more centers and then National Counseling of Independent Living started in the way 1970s. So really what is this Independent Living Movement, you know it really is emerging and better organizations. Leaders with disabilities who are committed to working with disabled people, helping disabled people becoming powered, helping people learned that they can have dreams and visions of their future, working with families to get the families to see that the disabled children can grow up, but they also had to play important role with the children and then working with the city governments, the cabinet governments, the state governments, the federal governments, both on a passage of registration and then implementation. So I think of the movement as like an onion, because there are many layers. So when we first started, there was one big onion and we wanted that onion, because we couldn’t get the onion. So we got the onion, but then there were so many things we had to do. We also talked about CILs are like candy stores. Because you know the candy stores there are so many different types of candies and if you get a nickel, and everything closes the nickel, and you could only buy one thing, what are you going to buy? So if you think about the discrimination, there are so many discriminations, housing, transportation, health care, employment, people don’t have enough money to be able to live out equipped, they don’t get to go to schools, or they go to schools but they don’t get the right education, they are not getting into high schools, having difficult to getting into the universities, then difficult to getting jobs even they were trained. Then in United States one of the big problems I think very much like in some European countries is also additional discrimination. So if you are white male disabled person, you face lots of discriminations, but if you are black male disabled person, you face more discrimination. If you’re poor black male disabled person, if you’re poor Latino disabled person, and if you looked at white people who were middle class, and then you looked at other racial groups, the white group was discriminated against. If you compared white disabled people to white non-disabled people, white disabled people had poor outcomes, but if you compared white disabled people to black disabled people, black disabled people had poor outcomes. So, some of the issues that we’ve been working on in the United States over the years is to ensure that the movement really is representatives of everybody. Not because of very complex, because we grow up in societies where whether you are disabled or not. People didn’t assert to go to school together by race. But today what we see in the United States is more than 400 Centers for Independent Living, quite close to 500 now. Some of the centers are weak and some of them are very strong. Most of the states, all of the states now have something called State Independent Living Councils and many of the states have Independent Living Coalitions. So, in New York and California, and Illinois for example, and Massachusetts, you have Coalitions of the Independent Living Centers. And in many of the states, they are getting money from the Federal Government from the States Governments and also they get money from the local governments and some of them from the Foundations and Cooperation. But one of the important parts of that movement is that it brought thousands of people into the communities, and worked on getting laws implemented on fighting with the local governments and the county governments so that the laws would be implemented, so that street corners would be accessible, the busses would be accessible, and the trains would be accessible. To working on the issues of education, getting children into school, working on employment and housing. So I think the movement itself has really grown, certainly it had very important role in this country and in the countries all around the world. All the countries followed similar model, you know that the model is getting disabled people together to discuss the problems, but to create the solutions. And to gain disability and power and respect, so that people can began to understand that the barriers that we have faced are very much the result of societies are discrimination or lack of concern or lack of knowledge, whatever you want to call it.
－So, they are doing advocate strong enough or do you think they’ve done enough?
Of course not. The problems haven’t resolved in any country yet. So advocacy is critical to continuing to break down the barriers. If you tell the same story in Japan what happened in last 20 years, there have been many changes. And advocacy has helped bring about many of those changes. But there are still many many many problems that still exist, so I think you know one thing here in U.S. also is this did more intention being more focused on younger disabled people, getting younger disabled people more involved in the movement early on. Now it’s kind of curious me because it was younger disabled people started the movement here. I mean my friends, I, and others who were young, like we were teenagers and 20s and we didn’t have anybody up there teaching us how to be a leader and how we should advocate. But I think one has happened over the years is ousting, have forgotten better, people are not continuing to reach for the star.
－Same as Japan.
Every where. Right, so, when we grew up, we had no busses, no trains, no captioning on TV, kids didn’t necessarily go to school, or getting education, weren’t getting jobs, couldn’t go across the streets, didn’t have the access to the technology, some of which didn’t even exists it that time. So now, you know person who is born today with disability, the busses are accessible, the trains are accessible, they have access to technology, they can get across the streets. If you were deaf, there is more things there for the blind, if you have intellectual disability or whatever, there many more things that exist today, because the Americans with Disabilities Act, the Individuals with Disabilities Education Act, the work that have been done on UN Convention on the Rights of People with Disabilities, all those things have come about. So in some of the Western countries it’s like well, “what’s the problem?” And in many cases the youth don’t really, I don’t want to say they don’t begin to experience, because they are experiencing if they have visible disability. They are still probably experiencing the discrimination in high school and in elementary school. Different than I think what we experienced because I didn’t even get those schools, these kids are more more in these schools, so they begin to have that kind of discrimination but before when things are very segregated, bad things happened but good things also happened, right? When we went to camp together we started really talking about. What’s the problem, how we would like to change it and it got more mature, we got older, and we started trying to do things. So you know we don’t really have those camps anymore. But in this country more kids are going to regular schools and so I think one of the value of the leadership for the youth is bring them together and some cases for the first time, being with other disabled people. In someway it’s delayed because I was in camp when I was nine, and these kids are sometimes getting together till their 16, 17, 18 and 19 years old. So in the States you see many of the states have Summer Youth Leadership Programs where youths from like Virginia, those select twenty, thirty youths and now come together for a week. They’re all disabled, different types of disabilities, they come together for a week more some cases, so they are really getting opportunities to come together to learn about advocacy and leadership, so we focus more helping develop leaders.
－You mean IL Center?
The centers are involved, but it’s more than the centers. So, States have like governors committees. Unemployment of tip of disabilities and they maybe involved. And the centers are typically involved with all of this, but then they are necessarily the leader. So the centers play different roles because here in the State there are so many different types of organizations and some of the communities’ centers are very powerful and some of them are not, some of them are small, some of them now are more for multi-million dollar organizations. Because in some of the States the centers have began to get money from government for attendant services. Well, it’s some motivated. They gain more money because they get contracts with the government, so organizations go from small, and some cases more than multi-million dollar organizations, but some people question whether the centers can be advocate where they were before, when they were getting this money from the government because the government prescripts one out of ones. And then you know some people get concerned what if they loose the contract which was what happening in England. In England centers were getting money from the government with small services, but in some cases other organizations began to get that money, because then the center which have been small and became large, became small again. Because they lost the money that they were getting from the government. That hasn’t happened here yet? But certainly possible it could happen.
－It’s happening in Japan for sure.
So you got money from the government?
－Yeah, for attendant services.
And then other organizations competed for the grant.
－Many times, disabled organizations.
Right, it gets back to another issue that I was discussing earlier about this onion and candy stores. So in the beginning there was no money in this. We started the organizations from no money, got some money, people got paid very little money, most of people wanted to work in those groups, I mean non-disabled people. There wasn’t enough money for them. But then this disability community was advocating more affectively, to get personal assistance or to become the agency that got the money, then it became more recreative. And I think one of the problems has been that you know may have great advocates but we haven’t necessarily focused on the business management. And at the end of the day when you’re getting money from anybody, they want to know their money have being spent well. And if they give a lot of money, they want really make sure that it’s been spent well. So you have businesses that can come and say “oh, we’ve done this for older people for long time, we can do it here, and you can come and look at our books, and you will see everything is fine.” And then they would go on compete and their better grant roaders, they are physical people, so I think you know one of the issues over the years in the movement here and abroad, as shown us that we haven’t necessarily learned that we have to be able to be more than just good advocates. We need good advocates, we don’t need only business people, and the business people shouldn’t necessarily be the leaders of the organizations. But the board and the staff, consumers, need to know that the organization is being running affectively.
Because if it isn’t, we saw that in CIL in Barkley, committee was the first program that started with no money. And then got little money and brought people in who are great advocates but didn’t necessarily have the physical skills finally we started getting some help but there was the period of time, nobody stole any money, I mean some places that you hear that, but that was not happening wasn’t that people were stealing the money. They were managing it poorly. You know that they were spending more money than they had. They wouldn’t spend it like a world trip, you know when you looked at what’s going on last year, the financial market, people getting big bonuses, people are earning basically no money, like hundreds of dollars, but they were fighting for transportation and house and equality. All of that which then had to and has to be done but didn’t pay attention and didn’t have the money in many cases to bring the people on who had the skills. That was the one of the problems. We knew how to be good at advocates. And also because I think it’s been getting little bit better but people didn’t get the training, you know if you had a disability and couldn’t get university, or you could only get training in certain areas, you didn’t necessarily have the people easily available who would work for little bit money.
Like Jorge, my husband, when he was in Mexico, when the movement there started to develop more, he was working full time. But then he became very involved in one of the groups, so he cut down a little bit of his work, so he could stand more time working with the organization but he didn’t get paid anything. So when he went to help the disability rights organization he got less salary. He was an account, so he could help. But most of disabled people are not going to stop working to go volunteering and not get the money. So I think in the United States what we’ve seen I talked about it with you and other people from Pakistan. Because what I was concerned about Pakistan was the model was very much the same. Strong advocates doing great advocacy work who didn’t necessarily know how to run the organization. But they are becoming more successful so they wanted to set up more organizations which were very important. So Barkley goes to one center to ten centers in couple of years. But what we learned here is you got to have some administrated training, help the organizations know that kinds of jobs they should be creating, and help them recruit the right people so you get personal policies. People do their time sheets, you’re paying your bills and that’s regardless of the countries that you live in, right?
So I would say you know here and around the world we’ve seen the development of Centers for Independent Living more advocacy organizations definitely the voices of disabled people moving into more roles of permanent and authority. Defiantly changes are happening in communities but still no where yet where we need to be because if you look at unemployment rate for disabled people around the world is much higher whether wealthy or poor countries in good economic times and bad economic times. So it’s not just the economies are weaker now that people aren’t getting jobs. Of course it affected by that, because disabled people still are not getting the same types of education or many of them aren’t, so there still less competitive of certain jobs, and whether equally competitive, there is job facing discrimination in many places. So I would say that one of the valuable parts of CILs is that they’ve also demonstrated that disabled people with all types of disabilities can work and could get good jobs. We’ve become probably the largest employer of disabled people.
Now I think one thing that we haven’t done enough is research. I think we talk about things but we can’t necessarily demonstrate. I don’t want to say that, of course we demonstrate the fact that if you make streets accessible, people in wheelchairs will come out, if you make the busses accessible, to make the trains accessible, you know you visibly see it. You see twenty years ago very few people on the streets, and today you see many more. So you see that’s right. But if we did some better research, it would also be able to show us what’s working and what’s not. I think this is very important. Disability is very different because in sex and race basically everybody is born on that way. They are white, they are Asian, they are black, they are Latino, and they are male or female. So some people get sex changes but still it is a small percentage. That’s what they are, but disability, most people are not born with disabilities. And people get their disabilities more and more as they get older, so it is not like you can just come into one group, and start working with the one when they were babies. And the other thing is because a Japanese family, everybody is Japanese. Usually in a black family, even with racial mixtures going on, you still have the grand mothers, grand fathers, and uncles who are similar to mothers and fathers. But in disability, you have any cousins with cerebral palsy?
－No.
No. I have no cousins, and actually I have a cousin now, who is in a wheelchair, and I was an adult and he became disabled when he was like twenty. But usually people don’t have other people and people who do like heart problems and high blood pressure, and things like that diabetes, which is usually in the family, they haven’t thought about this with disability. And I think still what we was struggling with is making disability a positive not a negative. And that’s one of the important parts of the Independent Living Movement is it should pride who we are, is not just Independent Living Movement, it’s disability organizations. You know if the blind groups or the deaf groups or the disabled women’s groups or the self-advocacy groups, the people with intellectual disabilities, when people can come together who are face to discrimination to talk about how it feels, you can legitimate anger, because I think that’s a very important thing people have a right to feel angry when they are being denial opportunity. The question is how you turn that anger into constructed action. So you don’t just become depressed, right? It feels like everything is hopeless. You have to see that the things aren’t hopeless and in my view it usually means that you also have to feel the power of a community. And I think that’s what’s very important about the Independent Living Movement. It’s the power of the community of people seeing that I can call you up and I can talk about things that happened to me and you understand. I can call you up and you may say “oh, that’s too bad” but I can really call her up usually and share like understand because she had a similar experience that you may have also had a similar kind of experience. You go for job and you compete against the men and you don’t get it. So they maybe think that a capable, and I may think that’s the other thing that the movement, the disability movement, and the Independent Living Movement is not just continuing to expand as disability rights movement but it’s also really trying to work for more with other Civil Rights Movements, not isolate, so we have done that from the beginning in California, we know that we saw that the elderly and physical disabled were always very powerful force in California. And elderly were much more organized so when we join them, it really expanded and also gave legitimacy because the elderly community in the U.S., they vote elective representatives listen to what they have to say.
So my feeling is that the ability through doing research which is really following, listening, and looking at what’s happening and trying to document what’s working, what’s not working. It’s really important and I know the disability movement many people hate to talk about research, they think it’s a waste of money. This little money for advocacy we shouldn’t put that money into research. And I agree that if the research isn’t quality research, it’s a waste of money. But research and analyzing data, like in the U.S. some of the people analyzing censers data and can really look at the numbers of the disabled people in their employment rates, and there is the other things that’s very important, but also I think it would be very important to look at what affect for older people happens when they become involved in CIL. Does it help they maintain a quality of life like they had before? Or if they have become isolated, does it help them become less isolated? Why? And how does peer support work? And how does it help people? And not. And how does it help people? And not. And what a different waste of doing things and looking at issues like what is the economic impact on disabled people who are working. How did they change their quality of life? On and on, and how are the views of non-disabled people changed when disabled people were going to their schools? And somebody who went to school with the disabled person becomes an adult, are they more likely to hire the disabled person in their business? Then somebody else who didn’t. This is terminal. And also look at research project that are going on and including disabled people that was one of the things that the World Bank when I was in the Department of Education, it was what researches were we going on, how we had include disabled in that research. It doesn’t always have to be separate research at all. Sometimes they need to be, but sometime it doesn’t at all.
So if you’re doing a research project in a world community, we have to start new transportation program, you should know the number of disabled people who have physical disabilities, who live in that community, or who are blind, or they need a combination to be able to design the system most effectively. And there were some cases here because there the laws that we have, they were required to do things in certain way which I am sure like, but Japan still had set a lot of permissive laws from you had law which said this is the law and this one community wants to adapted it, they can, but if the other community doesn’t want to, they don’t have to, right?
－Do you mean for disability?
Yes. Your laws have not always said all persons have to be accessible.
－But for transportation, I mean accessibility,
Then it’s changing. But in the beginning it wasn’t.
－No, that’s right.
In the States it’s always been when it came back the Federal Government, it was everything, anything getting Federal money. You know when it’s said curve cuts with the Federal money had to be accessible. It did not allow to criticizing New York. Everybody had to do it. The education law, now it’s said one thing that everybody had to do it. Everybody doesn’t do it, and that’s why you can have lawsuits and things but the law didn’t make it. The law has made some exceptions but you know like if the businesses more than 20 people, but if the businesses more than 20 people, or 15 whatever the number is.
－It was very good discussion.
I also think that it would be interesting about this, it’s to do interviews like this with this other people, and then just heard it, get people’s perspectives and maybe you have few more questions.