Judith Heumann – II

I got out to Berkeley, I think I had said before that I’d been accepted at Columbia.

So basically what happened was I had taken one course at Columbia and I kept teaching,

School of Social Work, and because I was, I was one of the founders and President of

Disabled In Action in New York City and so, at any rate, I taught three years in the New

York school system and decided that it was too difficult to take classes while I was teaching, so I would go back to graduate school full-time, and then I had been accepted into School of Social Work Community Organizing Program at Columbia and was going

to start that program in the Fall of, I think it was 1973, September of ’73, yeah, I was

supposed to start school in September of ’73, at Columbia, and then I got a call in the

Spring of ’73, from Ed Roberts, who had been one of the founders of the disabled

students’ program and was, you know, one of the leaders in Berkeley and, you know,

went on to become really one of the well-known icons in the field in the movement, and

he called me in the Spring of ’73 and said they, Berkeley School of Public Health and the

School of City and Regional Planning, that a professor in each one of those programs had

decided that they were interested in recruiting disabled students to the program and, well,

he knew of me because he was calling around the country and a lot of people told him to

call me, and we didn’t know each other then. People in New York didn’t know anything

about what was going on in California. I mean, I, no, Ed Roberts at that point was really

not known outside of California really. I had met some people from Berkeley, from CIL

in Berkeley, at a demonstration that we had had in Washington, D.C. when we had had a

march to the Lincoln Memorial and it was Larry Biscamp and Dick Santos had come

1 from Berkeley, and that’s the first time anybody had heard of what was going on at

Berkeley. The student support service started in the ‘60s, but CIL started in, I got out

there I think it was August of ’73, CIL had started in like ’72, and Ed was recruiting

activists to come out to Berkeley to get involved with the Berkeley CIL and to go to

graduate school, and there was an expectation that people would then go back to the

community they came from and continue doing work to set up the CIL. So when I got, so

I applied to, well, I was told to apply to City and Regional Planning. So I applied to City

and Regional Planning at UC-Berkeley. I think I might have mentioned this, but anyway,

so I was accepted into the program and then about two weeks later I got a call and they

said they accepted too many students into City and Regional Planning who had

disabilities, so would I apply to the School of Public Health. So Fred Caligna, who was

the professor at City and Regional Planning and Henrick Blum, was the professor at

School of Public Health and I was really ______they sent my application from

City and Regional Planning to Public Health at Berkeley. Well, the professor was at, of

the two professors, as, you know, as Ed had said, Blum and Caligna were the two

professors that were doing the outreach, so Blum was at Public Health and the other was

at City and Regional Planning. So I got into Public Health and I went to Berkeley in

August, I think, of ’73, and then I got involved with CIL.

The Architectural Barriers Act was passed later. I think the Act was passed in the

‘70s. The first, there was a piece of legislation passed in ’67 or ’68, which was for curb

cuts, but it wasn’t the broad access board. The access board came in the ‘70s. I went to

Berkeley on an airplane and I had a power wheelchair. They had power wheelchairs in the ‘60s, and I was using the brand of Emerson Jennings. I think, no, it might have been

2 a motorette. Motorette, it was a motorized piece of equipment that went onto a

wheelchair. It wasn’t together and you put it on a manual wheelchair. I’m trying to remember. Maybe at that time I had a regular motorized wheelchair. In the beginning, I had a motorette. The airline did same as they do now; nothing’s changed. You can’t sit on a plane in your wheelchair. It’s always been complicated because they, and plenty of times they broke my wheelchair. My wheelchair got broken plenty of times. I didn’t accept it and I sued them at one point then, TWA. It’s gotten, well, a couple of things have gotten better now. I think one is the wheelchairs are made better. Now there’s legislation, which requires that they handle wheelchairs, they get you your wheels, and they do things that they didn’t do before, and then I think the other thing, and the wheelchairs are stronger now and if they break it, you tell them that they have to pay for it, but they did, I mean at one point, it was later in the ‘80s, TWA completely destroyed my wheelchair, destroyed it, and sent me a check for $1,200. So I had a friend who worked for a big law firm in New York and their specialty was airline travel, airline accidents, so they wrote them a letter and said, well, I sent the check back and then they wrote and said, “You’ll pay for her wheelchair, you’ll pay for the rental of the wheelchair, and you’ll pay $1,000 in damages,” and they did, finished. But anyway, getting back to Berkeley.

So I went out to Berkeley in 1973, in August of ’73, and at first I lived in Ed

Roberts’ house for a while, while I was looking for a place to live, and then, I’m trying to remember, you know, that may not be right. I think I lived in his place when I got back

from working in D.C. I lived in an apartment in California, which was in the same building as CIL was. CIL had moved from University Avenue to Haste Street and later

3 moved to Telegraph Avenue, which is where it is now, and I got on the Board and Ed and

I became friends right away and I spent, I spent a lot of time with him over the years. I

was, when I first came out there I was in school and then I was on the Board of Directors while I was in school and then I came as a, we had to do a, a placement, you know, an internship for graduate school, so I actually left Berkeley in May or June of ’74, and came to Washington. It was a two-year program. We were supposed to do a six-month placement and then go back to school, but I got a, they waived my having to come back to school because you had to have a minimum of 39 credits, which I had. So I had the 39 credits and they let me, I, they gave me permission to stay in my job in D.C. and count towards my graduate work, and then I had to take the comprehensives. So I stayed in

Washington actually a year and a half and I worked for Senator Harrison Williams, who was from New Jersey, and I worked with a woman named Lisa Walker and a guy named

Nick Eddis. Anyway, so when I was in Berkeley, the first year I was there, I had a roommate named Nancy D’Angelo. Nancy was from New York. We had moved out to

California together and Nancy, she, she didn’t go to the University. She just decided she wanted to move and so we moved out there together. So we shared an apartment and I went to school, was on the Board at CIL, got involved in the disabled students’ program and it was a very, it was an important experience for me because it was different than being in New York. In New York, the work that we’d been doing through Disabled In

Action and the disabled students’ program, because we had started a disabled students’ program at Long Island University when I was there and the University had hired a gentleman named, his name was Theodore Childs, Ted Childs, and he had been in the military. He was a physical therapist. He’d been very involved with the NAACP and he

4 got his Ph.D. in Special Education from Columbia and so he, he was the first Director of

the disabled students’ program at Long Island University in Brooklyn and a group of us had worked to get the University to set up a disabled students’ program because they

hadn’t had one before and then we had set up Disabled In Action, which was a result of

the lawsuit that I had filed in New York to become a teacher. The lawsuit was in 1970,

because I graduated in ’69, and the lawsuit was in the Spring of ’70, and so Disabled In

Action, you know, had been, still is, but at that time was very activist, political, but we

didn’t have any services and so CIL and the disabled students’ program in Berkeley, the disabled students’ program was different than the disabled students’ services at that time in the East Coast because the disabled students’ program at Berkeley had like wheelchair repair, attendant referral, assistance in finding housing, benefits counseling, which were many of the same services that got set up at the Berkeley Center, so one of the issues between the University’s disabled students’ program and the CIL is the community had started asking that the disabled students’ program serve non-students and the University didn’t want non-students to be served. So that was one of the reasons why the CIL program started, and a guy named John Hessler was very involved. He was the Chair of the Board when I got there in ’73.

Anyway, so I think for myself in that period of time when I was at Berkeley, it was the first time that I’d lived in a warmer climate, although it got cold in the Winter, but not like in the East Coast. We didn’t have snow and it was very small, so not having, they didn’t have accessible buses, they didn’t have accessible trains at that time.

Berkeley’s got hills, but nothing, I mean the University had hills, but nothing like San

Francisco. So that first year was really an opportunity for me, both to be in graduate

5 school in a field that I really liked. I really loved going to Berkeley School of Public

Health. It was great. I had great professors and it was really the first time where I’d been

validated in my thinking because a lot of people study one field or study one thing, and in

Public Health, I was focusing on administration and planning and Dr. Blum, who was my

Advisor, was a very comprehensive guy and he saw things, one thing impacting on

another, so you couldn’t really look at life in a silo, but for me that was like amazing

because it was really a validation for the way I liked to think and do my work, and, and

CIL really was a program like that and we really evolved the Center as a disabled run

organization, which was a very activist organization, but also was doing a combination of

being politically active, working at the city, county, and state, and federal level on policy

in a variety of areas working on the empowerment of disabled individuals and being able

to help provide assistance so that people could get benefits if they needed it, find a place to live, get accommodations to their homes, get their wheelchairs repaired. It became a

cross-disability organization that worked with physically disabled people, blind people,

mental health intellectual disabilities, invisible disabilities, and on and on. It was a very,

very strong political force in the community and so, but for me, one of the additional

parts of my experience there over the years was in that first year when I really first began

to learn how to use personal assistants or attendants, because I had used attendants when I

was in undergraduate school, but I lived in Brooklyn. My family lived in Brooklyn and I really went home most weekends because it wasn’t very, you know, downtown wasn’t

very accessible, downtown Brooklyn, and I guess I never really felt comfortable over the

weekends because I didn’t get asked on dates, you know, so I was pretty isolated and so I

went home a lot on weekends, but at that time, there were no other students living in the

6 dorm who were in wheelchairs where I was. Berkeley had a more integrated setting. It

never had segregated setting. At that time, while our university was small, the dorm was

really not accessible. There were two steps, so every time I went in and out of the dorm I had to have people help me up and down the steps, and then the bathroom on the dorm floor had a step, so every time I needed to go into the bathroom, I needed help in and out

of the bathroom and that basically meant, like on the weekends, if there weren’t people

around, I couldn’t get in and out and so it was just easier to go home, but when I went to

school at Berkeley, I couldn’t go home and I had for the first time learned, well, it had a

bigger pool of people that were available, so I started interviewing hiring my own attendants, as did my roommate, and Berkeley was very, and is still, you know, there are a large number of disabled people who live in the community, so over time, having a disability was not an oddity in the community because the numbers were probably disproportionate to the typical population of disabled people in the community, particularly people in chairs, because a lot of people in chairs live there, Berkeley,

Oakland, power chairs as opposed to manual chairs depends on the person’s disability, so both, so a lot of motorized wheelchairs because, you know, for quads it was, but they started working on, because it was a smaller community, it was easier to make things happen, so, you know, you’ve got to have a plan to make curb cuts in the city and you get it done much more readily than you could in New York, right, so, because of the size, but, so, I guess I was going through a period when I was living in Berkeley that first year of learning how to be in charge of my own life, being able to give, learning how to hire and fire, learning how to give directions to a person to help me, because previously, until

I went to the University, Long Island University in New York, my mother did all my

7 attending work, and then when I was at the University, I had assistants, but never what I would say was really enough, you know, so it was, I had the essentials and then I would ask friends for things, but it was different. Here, I was able to really develop a system where I could have attendants who could help me do what I needed and, but that’s a whole new experience to learn how to hire and fire and direct and, you know, handle people and that’s true for anybody, but so some people can choose not to go into a job where they have those responsibilities, but it was like not a choice, you know, I could have not gone into management in my jobs, but in my life, I had to learn how to become a manager. So I would say for me in Berkeley at the first year, it was a challenging experience going to school. It was exciting learning more about myself. It was, I was getting very involved with the Center being on the Board of the CIL and Ed and myself and other people, it was really fun to be doing the planning of what was going there and then I went, so what happened was, it was December of ’75, I went back to Berkeley.

So basically when I was in D.C., I worked on IDEA, the Individuals With

Disabilities Education Act. Lisa Walker and Nick Eddis were the key staff people for

Senator Williams. It was the All Handicapped Children Act. So I worked on that and the

All Handicapped Children Act is the original name for IDEA, Education for All

Handicapped Children’s Act is what it was then, EHA. Now it’s called the Individuals with Disabilities Education Act, and so I worked on that legislation. I worked on transportation legislation. I worked on Section 504. At any rate, so then being in D.C. was a great experience because I learned all about legislative process, I got actively involved, that’s when I met Fred Fay, that’s when the American, ACCD, the American

Coalition of Citizens with Disabilities, was formed. He was at Tufts; he was at Tufts.

8 He, when I first met Fred, I met him at a meeting and he was still sitting upright in a wheelchair and this was in ’81, ’81, ’82, I think that’s when. At any rate, I had been involved with Eunice ______, okay, now we’re back in Washington. So in

Washington, I’ve got my day job, this is ‘74-’75, got my day job on the staff of Senator

Williams as a legislative assistant. When I got there, they had just passed Title V of the

Rehabilitation Act. So I had been very involved with Disabled In Action, National

United Cerebral Palsy, Eunice ______and the Mayor’s Office on Disability. At that point I think it was called the Mayor’s Office for the Handicapped in New York City and PRIDE, which was a group in Queens, Disabled In Action. We’d been very, very actively involved in protesting the vetoing of the Rehabilitation Act, which occurred in

1972, under Nixon and he was upset about the independent living section of that statute.

You know, really at that time, he was saying that he didn’t want to raise false expectations. I actually, at any rate, I really don’t know who put that independent living section into the legislation at that point and it wasn’t really being done by the Centers at that point. So the Title V had been passed when the Rehab Act was passed in 1973, and so work was beginning on the development of the regulations, and so I was involved with the other staff at some meetings dealing with the writing of the regulations and John

Wodatch, did you, well, John, you know, he’s in a very unique position because he is probably the only person who has been involved with civil rights legislation through

Health, Education and Welfare, and then in the Justice Department, of anybody. So he’s,

I mean, Title V was passed in ’73, and he was involved from the beginning, so he’s been involved for like 35 years, you know. Anyway, so at the same time, you know, Nixon was impeached, Ford became President, more work was being done on Section 504, the

9 American Association, the American Council of Citizens with Disabilities was formed

and I was the Secretary on the Board. Fred was on the Board, Lex Friedan was on the

Board, Al ______was on the Board, Eunice ______was on the Board,

Phyllis Rubenfeld at one point was on the Board, a number of other people, and a lot of

our work was focusing on Section 504 of the Rehabilitation Act. So that was also some of the stuff that I was doing while I was in D.C., and then in September of 1975, I got a call from Ed Roberts. Ed had become the Director of the Department of Rehabilitation under the Brown Administration for the State of California while I was working in D.C.

He had gone to Sacramento and Phil Draper had become the Director of the Center for

Independent Living in Berkeley, and I had stayed on the Board of Directors while I was

in Washington and I was just doing meetings on the telephone. Lex Friedan, your piece

is following Tim Nugent, right, but Fred and Lex also have done work together, Fred Fay

and Lex, from the ‘70s. At any rate, so we were all involved with the formation of

ACCD and so in that year and a half period of time that I was in D.C., the Education for

All Handicapped Children’s Act was signed into law. The regulations were being

developed for Title V. They were working on transportation on the issue of accessible

buses and I had been arrested on an airplane and had a suit. Well, this is what happened.

It was in 1974. It was in the end of December or the beginning of January ’75,

well, it was around Christmas, because I had gone from Washington to New York for the

holidays because the Senate was closed and I was coming back to Washington from New

York. I think it was from LaGuardia. My parents had driven me to the airport. At that

time, they didn’t have all these ridiculous security things, but I had had difficulty, well, I

was reviewing, when I went to pick up my tickets, I had a copy of the Federal Register

10 with me because I was reading proposed rules on airline travel for disabled people. They

were trying to restrict airline travel for people who needed assistance. The airlines were

pushing it, but it was I think the FAA. Anyway, there were, I believe there were a

proposed set of rules that had not been finalized and there was a big, they didn’t get

finalized, but at any rate, I got to the counter and as a part of my job, I was reviewing

these rules, proposed rules, and they told, they weren’t going to sell me a ticket. They

weren’t going to give me my ticket because I was traveling by myself. This was Eastern

Airlines. Both of them are no longer, TWA and Eastern, but at any rate, I wound up

getting on the plane, but asked to speak to a manager and the manager’s manager and said, “You know, right now I’m reading these rules. These rules are not final. You can’t do this. You have to put me on the plane.” So they gave me the ticket because the rules had not gone into effect, and they never did, but at any rate, so I got on the plane. I think my father helped me on the plane. My parents left. I was first on the plane and they ordered everybody on the plane, and then a flight attendant came over and said I couldn’t fly unaccompanied, and I was also reading Fear of Flying. I don’t remember the author.

It was a woman, but it was funny because, and it was her big first novel, and I was just starting to read it and in the beginning of the book she talks about how she’s afraid of flying and I used to be afraid of flying, so it was all kind of very, so they came and said that I couldn’t fly by myself and I, and I said, at one point they asked the guy sitting next to me would he be willing to assist me in the event of an emergency and he said, “Yes,” and I said, “Thank you very much, but in the event of an emergency, plenty of people are going to be injured on the plane. Why are you singling me out,” you know, “It’s not a law, it’s not a rule,” blah, blah, blah, so then they sent somebody in and they were saying

11 I needed a medical note that said I could fly by myself. Well, remember, I had all those problems with the Board of Ed getting my teaching license and so I said, “Well, you know, if you give everybody a medical exam on the plane to determine that everybody is able to fly, I’m very happy to do that.” Then the Captain came back with his little book, which says he’s in charge of the plane and he can make any rule that he wants and I can’t fly unattended and I said, “Well.” Then they brought two cops on from the Port

Authority. I told them, “I’m not getting off the plane.” So they sent these two big cops on the plane and I’m like, “Great.” I’m so excited at this point. I mean I was nervous, but I was very excited and I thought, “This is great. I’m going to get arrested,” you know, “I’ll go to jail,” and you know, we can really build because that’s what my life was about was building all these things and it would really allow us to continue to show the types of discrimination that disabled people were facing, well, and establish precedence as a civil rights issue because we hadn’t, disability wasn’t a part of any of the civil rights legislation from the ‘60s. They were all these separate pieces of legislation. So the cops came on the plane and they said, “You really,” you know, because basically what this guy said was that he was my assistant, that he would help me and I said no. So they said,

“Well, we’re going to have to,” “We’re going to have to arrest you and take you off the plane,” and I said, “Okay.” So they took me off the plane. Now, I’m under the presumption that I’ve been put under arrest. Otherwise, I never would have gotten off the plane. They didn’t read me Miranda Rights. They didn’t do anything like that. So it was the last plane out and I, they asked me for I.D. and I, I gave them my American Express card. I was nervous I guess and they said no, that wasn’t sufficient, so I gave them my

Senate I.D. Well, the Airport Port Authority Police and Port Authority Police are New

12 Jersey and New York Police, so the looked at my card and they said, “Who do you work

for?,” and I said, “Harrison Williams.” So then they didn’t do anything else because

when they heard I worked for Williams, they weren’t about to arrest me, but it was the

last plane, so I’m out at LaGuardia on a Sunday night by myself. I didn’t drive, I

couldn’t get into a taxi, blah, blah, blah, so I called a friend of mine who worked for, he

worked for a radio station, WOR, I don’t remember, but his name is Mallory McCork.

Anyway, there were a bunch of articles in the paper at that time in reaction to what

happened to me. The Daily News sent a reporter out while I was still there and I called

him, Mallory McCork. His brother wrote this book, his wife’s name was Diane, and they

had a kid with a disability. Anyway, so then I filed a lawsuit. My parents came and got

me, but we had Judge Sirica, in Federal Court in D.C., John J. Sirica, who told my

lawyer, Bob Nash, and who worked for the Committee for many years, and Sirica says I

have a history of being with judges. “This was a set-up. It wasn’t what it was,” and,

because I wanted a jury trial, and he said that basically he wasn’t going to hear it, so he threw it out. So we appealed it, and then, it didn’t happen in a day, over a course of months, we appealed it and the Appellate Court remanded it back to Sirica and Sirica said he didn’t care what a jury would award, he would only give $500, and so Eastern settled

out of court for $5,000, but I think that was the first litigation of this type in terms of

flying.

So, at any rate, I went, I went back to Berkeley. Well, Ed calls me in like

September of ’75, to tell me that they had applied for funding from United Way for the

Bay area, they wanted me to come back and be the Deputy Director of the Center, and that they were going to get this money and so would I come back and be the Deputy for

13 CIL. So I said yes, with the presumption that I was going to have a salary, which ultimately didn’t happen. So CIL, when we were growing, we were on it. Well, they didn’t pay, we had very low salaries, so for a couple of years I was earning like $300 a month, but then I was on SSI and my attendant care money, which is basically how I was surviving. I lived in Ed’s, you know, maybe, I’m trying to remember; Ed was in

Sacramento, so now I must have lived in Ed’s house when I first came out there in ’73. I must have because I did live in Ed’s house for a while when he was there and he moved to Sacramento in, it was his mother’s house, so she’s still there. It’s on Ward Street and I went back in December of 1975. The Center had no residential, never, never, never, no, never, never, never. I would never ever have been involved in anything that was, I mean, that’s a whole other thing, we, no, the Center was very much focused on integration, making housing accessible, I mean, I guess those are some of the differences between BC

CIL and the dorm program at University of Illinois and Berkeley. Berkeley, Ed and a number of people have lived in the, well, it was something that was created, but they never wanted to be there and so that didn’t last all that long, and then they did set up a program, which still does exist, but it’s, it’s services for disabled individuals who are students. I think they live up for a year basically, but it’s not in a separate building. It’s in a regular building and they’re learning how to hire and train their own personal assistants while they’re in school. So conceptually, I think it’s similar to the program that they had at University of Illinois in Champaign, but it wasn’t in a separate building. So then I came back to Berkeley in ’75, as the Deputy Director of CIL, and by this time, Ed had moved to Telegraph Avenue and that’s where it still is. It’ll be moving, they’ll be moving next year. They’re moving to a new place called the Ed Roberts Campus, which

14 is on Ashby. The CIL is not connected to UC-Berkeley at all. The Ed Roberts Campus is

a combination of a number of disabled, disability organizations, The CIL, the Disability

Rights Education and Defense Fund, Disability Rights Advocates, Through the Looking

Glass, and two or three other organizations, and they’ve raised about $44 million to build a really beautiful building, which will be a green building and will house these different organizations and it’s in Berkeley. Do you know Berkeley at all? Okay, so it’s right by the Ashby BART, the Area rapid transit, so it’s, it’s on Ashby, near Martin Luther King, so they started construction last Fall.

So I went back and was Deputy Director. I did that from December of 1975 until

I think 1980, and oh yeah, we did great cutting edge work. CIL was really the nationally recognized independent living center in the States and around the world. So we were doing very cutting edge work. We were, you know, one of the things that had been beneficial for me was having worked with, worked on the Hill and learned about the process and when I came back, one of the areas that I worked on at the Center was legislative affairs. So, you know, I worked in part with people like Jack Duncan, and we were working on language in the Rehabilitation Act of ’77, I believe it was, where independent living finally really got through and, this was under Carter, and we also, of course, had, at any rate, so for the legislation, Jack had come to Staff Hearings that were held in the back of CIL and George Miller, Congressman from California, and a

Republican guy from Ohio, whose name I don’t remember, but they came out and held

Hearings for a day, or was it, maybe, anyway, so we had this day-long set of Hearings, which when Ed became the Director of the State Department of Rehabilitation, he put money into setting up ten CIL’s in California. So we were very active, CIL was very

15 active, in helping to set up the first coalition of independent living centers in California,

and then we were very, we organized the Hearings with Jack and other people for day-

long Hearings, which brought people from all the Centers in California to the Center and

then we had many different panels. So Ed spoke and a City Council member spoke,

County Board people spoke, some state legislators spoke, people who received services

from the Center or Directors of Centers spoke, we had employers speaking, basically, the,

the Hearings were to get the issue of independent living established and firmly put into

the legislation, federal, but we hadn’t done any legislation in California. There was some local media, yeah, you can go back in the archives, I’m sure, to look at some of this. We already, I believe, around that time, we were working on getting legislation passed in

California to, state legislation that funded Centers. So, and that legislation was authored by a guy named Tom Bates, who was the Assemblyman at that time, and now is the

Mayor of Berkeley, and prior to that had been the, on the County Board of Supervisors.

So Berkeley and the other nine Centers in California, we had the largest number of programs. Michigan had a number of Centers, Massachusetts. Well, Elmer Bartell didn’t come in until ’78, I think, so you had BCCIL, Fred was involved, and a guy named

Gerbin DeYoung was involved in Massachusetts. They were beginning to get some other

Centers set up. When the federal money was passed, it gave money to set up ten Centers for Independent Living around the country and one of the Centers, well, there was the

Para Quad in St. Louis and Access Living in Chicago. So Access Living has had one

Director over the course of its lifespan and that’s Martha Bristow, she’s still there, and

Lex was involved, I think, it was one of the first Centers in Dallas.

16 At any rate, so The Berkeley Center was involved in many, many activities. We

started out, when I got there, we had about 50 staff. We grew to about 200 staff. We had

financial problems, then the staff went way down again, that was about when I left and

went to work in Sacramento with Ed Roberts at the Department of Rehabilitation, but I

would say that, you know, that first 7-8 years of the Center, we really were breaking a lot

of ground doing projects that worked with children and families through seniors. This

was about ’72-’80. You know, we, we didn’t support segregated housing. We didn’t

support segregated transportation. We were involved in litigation to get the buses

accessible. The trains at that point, there had been litigation, not by the Center, but by an

individual in California and they had won on that, which was requiring that BART make

its system accessible and so BART was developing and eventually, the litigation in

California around the buses, we had demonstrations and Hearings and a woman named

Kitty Cohn was very involved with that and Hale Zukas, Karen Parker, they did some great work on that, I mean all of us, and then we also, the Center was really a hot bed of activities, so we were making changes in the City government, the County government.

We were working much more in a cross-disability movement, but we were also working with labor unions and community based organizations. We tried to get disability integrated into other activities. We were, we had people represented on City Council

Committees and we were very, very active, and we had lots of people who were coming from other countries and from other parts of the United States in terms of understanding what we were doing and then taking these ideas back to their places, but ______at that point was called the Mecca, and we, you know, we had, we were setting up a program to do international work, which was being worked on by a guy named Bruce

17 Curtis, who’s still doing work in that area with a group now called the World Institute on

Disability, which Ed Roberts and I and a woman named Joan Leon set up in ‘81, ’82.

Well, I actually never moved to Sacramento. I stayed living in Berkeley, but I worked with a state agency, but Joan Leon worked with a state agency and we, I had a van and so we just drove up a couple of times a week to Sacramento and worked. I guess we went up there about four days a week, sometimes five, and I worked there with Ed probably for about seven or eight months because it was at the end of the Brown term and the

Democrats didn’t win. I think it was Duke Magin and then Wilson or Wilson and then

Duke Magin. At any rate, so, but I think, and I was doing a lot of traveling so I was in

Washington a lot and was back here. I went on the Access Board, then I was on the

President’s Committee, then I was appointed to the Commission on Women, then everybody quit because Carter fired Abzug, and so I think for me at CIL though, one of the ways I looked at CIL is we had great thinkers and great visionaries, and we kind of, I mean, speaking for myself, I looked at CIL in the movement at that point as kind of like a candy store that had a very wide selection and we basically, because the, the degree of discrimination that existed against disabled people and the lack of protections were so significant that any, you know, people talk about pick the low hanging fruit, well, I guess it would be fair to say that we felt there was a lot of low hanging fruit. That’s when

______started, like in the later ‘70s, and so really I would say the ’70s was a real hot bed of activity all around the United States.

We had the occupation of the Federal Building in 1977, in San Francisco, and I was one of the definite leaders of it. Have you seen the film? It’s called the 504

Demonstrations, because that’s what it was. The demonstrations in ’77 were over the

18 fact that President Carter had not released the Section 504 regulations. So there was a

Committee that had been set up by the Administration, and myself and a number of other people were on that Committee. We were going back and forth in Washington to get

rules out, ACCD was playing a very big role in that, and at that point, we had gotten

enough money to hire a Director, who’s name was Frank Bowe, and ACCD had decided,

I believe in February of ’77, that if the regulations were not signed by a certain date in

April, that we would have demonstrations around the country, and Califano was Head of

HEW, so there were demonstrations in nine cities. The one in Berkeley was, we basically

set up something called the Committee to Save 504, which was run by people from a

number of the Centers and some other groups, and yeah, we occupied the building, I

think it was 26 days, but a group of us left. Basically, was happened was during the

demonstrations, Werner Erhardt, who was friends with Ed, had offered to give money to

fly a group of people back to D.C., so twenty of us went back from the building to

Washington to work more closely with ACCD and do visits on the Hill and demonstrations and to inform people why we occupied the building. The regulations

were eventually signed. The goal for the demonstration was to get the Regs signed

without changes and that’s what happened, and Califano was trying to change the rules

because the Lobbyists didn’t want it. We felt he was trying to change the rules to the

detriment of people with disabilities. They were saying that they were only making it

simpler English and, well, I mean, there were a number of people, a woman in

Congressman Miller’s office named Ann Rosewater, John Wodatch, Peter Labasci, who

was the General Counsel, and you know, in the beginning of the demonstrations, the

people in HEW were basically trying to say that, you know, we were, you know, radical

19 disabled people who didn’t know what we were talking about, that they were just, as a

way to discredit us, and it was a Sunday and I was on the phone and a woman named Pat

Wright, we were on the phone talking to this guy, Peter Labasci, and Peter was going

over the changes that they were proposing and George Miller, one of the Congressmen

from that area, had come in just to see how everybody was doing and we had him pick up

the phone while we were having those discussions and George heard what Labasci was

saying. Well, he was basically substantively going over the changes, which were not

grammatical changes. They were substantive changes, so George was furious and he

basically told us, he was a Congressman from the Bay Area in California, but I don’t

want to say he accepted accepted, because Ann Rosewater and his staff person knew that

that really wasn’t it, but I think when he heard it on the phone that way, he basically got very angry at Peter and he told everybody there, you know, “Don’t leave until this is

resolved,” but you also have to understand that, you know, California at that point on the area, on the issue of disability was different than most other places. So, well, it was also understood it as a movement. So Mayor Mosconi basically, they, they wanted to get police to come and take us out, but nobody would sanction it. Well, I think the other

thing was though that they, no I mean in this case, they supported what we were doing.

So when you look at, when you see the video, you’ll see that a piece with Mosconi is on

the phone and he’s trying to get them to bring showers into the building, but they did get

payphones. So Pritchett, was he pro or anti, the one you were just talking about Georgia

and how they, I thought he was anti and upholding segregation. So here you had the

Governor being supportive, you had the, because Ed’s in Sacramento, right, so Ed’s

dealing with a guy named Lantimer and he was Head of the Department of Health. They

20 sent cots down and we had organized internally. Originally, we weren’t planning to take over the building, which was eventually taking over the floor because we took over a floor in the building, and the building was open, but people couldn’t come and go, and, but a couple of us had decided like the night before that we should see what the environment was like, and I talked to people about staying over night, but if it didn’t look like we were getting what we wanted, we should stay and we thought it would be easy to get people to stay, although nobody was prepared to come. I had brought an extra pair of underpants and a toothbrush with me. There was a Committee, Kitty Cohn, Mary Lou

Breslin, Pat Wright, Jim Peachin, Joanie Brevis, a couple of other people who had been negotiating with the Building prior to the demonstrations because, you know, we had a demonstration outside, we had a license or a permit, we came into the Building, it was all very up and up, we had a scheduled meeting with Joe Maldonato. He was the Regional

Representative of HEW, poor guy, he didn’t know what was coming and he also didn’t know anything about the rule. I mean that was basically what we were able to really, we made him bring his staff in. His staff had never read 504 and they knew nothing really about it and so we basically said, “Well, we’re not leaving because clearly this isn’t being taken seriously,” blah, blah, blah, so about, I don’t know how many people, eventually, there were like 150 people in the building, but we had Press all the time because we had, you know, people who were really good organizers working on this, so we had demonstrations like every day outside, the labor unions, the church, the women’s community, blah, blah, blah, disability community, and we, we had basically organized internally in committees and there was a Press Committee, and I mean, ______came in one day. We had papers from Paris and all over the world and, but you have to

21 look at this video because, and it’s called 504 Demonstrations. Peter Labasci worked, he worked for a guy, David, he worked for the Head of the Office of Civil Rights. Labasci worked for, in the Office of Civil Rights in HEW. I mean I talk with him, you know, I saw him afterwards, but I think he was being instructed what to do by John Califano.

John Wodatch will know a side that I don’t and John is very knowledgeable and he was very involved. David Tadle was the Assistant Secretary for the Office of Civil Rights and Labasci worked for David and John worked for David before it became, before it was broken up to become Health and Human Services and Education, and at any rate, so the demonstrations out in the Bay Area were actually the longest takeover of a Federal

Building in the history of the United States, 26 days, and there were demonstrations here.

There’s a piece in Time magazine when we came out here about the, now the Press on the

East Coast was nothing like the Press on the West Coast. On the East Coast, there was a little bit, there was a little bit. I think there might have been a, but in ’77, I think there might have been a little piece in the paper here, when, when a group of people from

ACCD refused to leave HEW offices here, but they refused to let medicine in, people left after a night. We used they’re leaving as a reason to stay. So we basically said, “The federal government starved out the people, didn’t get people medicine,” and we weren’t going to leave. So they, unfortunately, like Eunice is dead now and Fred Bowe is dead, but did Fred Fay, was Fred down here during that time?

So, but after the demonstrations, in ’80, I left and began working with Ed Roberts.

It was basically a change of the guard at CIL and there were political differences. So then I left. It actually wasn’t the young turks. It was a kind of more Berkeley style conservative group of people, but so then I went and I worked. I lived in Berkeley, went

22 to Sacramento, but then we eventually took over. I met Michael Winters in 1977, at the

White House Conference for Handicapped People, and Michael was there. There were delegates. I was a delegate from California and he was a delegate from Illinois because he grew up in Chicago. So he was a graduate student and we basically, he did his internship out with us and then he became the Head of the Services Division of CIL.

Then he eventually left and went to become the Director of the Center in Hawaii. Then he came back to be the Director of the Berkeley Center. I became the Chair of the Board in Berkeley, which is when Michael came back and was the Director. We basically overthrew the old Board because they were going to hire a non-disabled person, and that was it, I said goodbye and moved on. I wish it was so simple, but at any rate, that’s basically what happened, and so 7-8 months after I leave CIL as a Deputy Director with a state agency, Ed Roberts, Joan Leon, and I started this group called the World Institute on

Disability, and we had started planning for it in ’80. So I guess the election was in the

Fall of ’81, for the Governor, so Brown was in for eight years and then Republicans came in. They were elected in ’81, so we left in ’82. We started working on WID in ’81, and so after we left office, because I was political, Ed was political, and John was political, so we all had to leave and we were Democrats. So I’m still in Berkeley and Ed actually eventually moves back to Berkeley. So basically we began to get it set up. We did fundraising and rented a place and, you know, set up the purpose of the organization and the organization’s about 25 years old. It’s headquartered out in Oakland. It was originally in Berkeley, Berkeley-Oakland border, now it’s in Oakland. We got

Foundation money and then we got Federal grants and that’s how it’s continued with

Federal grants and Foundation money, corporate money. It’s basically a disability think-

23 tank and it focuses on different issues. When we started it, we were, we, one of the main

areas that we were working on was public policy and independent living and personal assistant services, and we also started doing work through the Institute on international

issues. We called it the World Institute on Disability because Ed and I, you know, basically very much believe that we have a lot to learn from other countries, as well as other countries having a lot to learn from us, so we, we, for example, spent many years doing research on personal assistant services, what was going on in all the states of the

United States, what was going on in other countries. We had a lot of research about a woman named Simi Lithback, headed up that work. We had a couple of what’s called

Research and Training Centers, funded through the federal government, one on personal assistant services, one on independent living, and then we had some grants from USAID, and so our work then really focused in those areas and we were beginning when I was still there to do work in the area of technology. A woman named Debbie Kaplan came on

staff and was doing some great work because it was really in the beginning of looking at

insuring that as technology was advanced that it was accessible. So there really at that

point hadn’t been any groups that were disability-run organizations working on public

policy. So that’s really what it’s focus was. Now, you know, it’s evolved over the years.

It’s still doing work, some work in technology, but a lot of work in asset management in

terms of people with disabilities, but working with federal programs like IDA accounts,

Individual, not Disability, Deposit Accounts, or something like that, IDA accounts and

they also have a very strong project that’s working on Social Security issues, Take It to

Work, and basically all the Amendments that were made and they’ve, they’re doing a lot

of work in that area working with disability organizations in the United States, helping

24 them to get more knowledgeable about what the programs are, how to use them, and

they’re still doing international work. This guy, Bruce Curtis that we hired at Berkeley

who came from where did he come from, they’re in Oakland now. Their Director is right now a woman named Kathy Martinez, who’s going to come work for the Obama

Administration in the Department of Labor. They don’t know yet who’s going to replace her. So yeah, I mean I think, I was with WID, well, the founder until I left to come work for the Clinton Administration in ’93. So from ’82-’93, I was working with WID.

The Clinton Administration offered me a job, well, I worked on the campaign as a volunteer and I was, they had a National Committee, Disability Committee, and I was on the Committee, because the disability community had been getting more active in the

Democratic party over the, really from the Carter days. You know, that’s a very good question why not the Republicans. I think, they’ve had people, but it’s never, I mean, my bias is that the more movement oriented progressive people are Democrats. They’re not

Republicans. I think it’s similar to the limited number of African-Americans and Latinos in the Republican party, and I mean, there are some disabled Republicans, you know, Sue

Sutter, Carl Sutter, from Illinois, John Kemp, but John Kemp, you know, he, John Kemp was more of a moderate, you know, Republican, probably more like a Jacob Jabbitz, or

Senator Spector kind of a Republican, and he, we never understood, they never hired him in the Department of Labor and he was a great, and is a great guy, very smart, great spokesperson, lots of experience, so I think, you know, Clinton hired, Clinton wasn’t

afraid of hiring, not just people with disabilities, but knowledgeable progressive people

with disabilities. The people that he brought in, there were no, you know, in the

leadership positions, there were no, none of us were shrinking violets. We were very

25 known for who we were and our outspoken positions and, you know, I came in as

Assistant Secretary. Susan Daniels came in in a high level position in Social Security.

Martha Bristow became the Head of the National Council on Disability as their

Chairperson. The Access Board had very progressive people on it. Becky Ogle was brought in to the Department of Labor to head up an initiative there. Bob Williams worked over in HHS. A woman named Sue Swenson was brought in and none of those people are shrinking violets. I came in as Assistant Secretary in the Department of

Education, Office of Special Education and Rehabilitative Services. At any rate, so yeah,

I mean and I would, I would say, you know, when you look at what happened in the

Republicans, I mean, they did bring some disabled people in, but, yeah, in George W.

Bush Administration, they had a number of disabled people that worked in the

Administration, but I don’t think most people would disagree that it’s not only that they didn’t make progress, but things went backwards in many ways, during the Bush

Administration. So I think it was very unfortunate, but lots of things went backwards.

So I was Assistant Secretary for the Office of Special Education and Rehabilitative

Services in ’93, and I stayed until the end of 2001. It was a great job; it was a great job because OSERS is a, OSERS is unique in the federal government. I don’t know what’s going to happen under the Obama Administration, but it’s got three components: The

Office of Special Education, which oversees the Individuals with Disabilities Education

Act, both, we worked on monitoring of the Statute, there was funding in the Statute for research and technical assistance, we funded parent training programs, and the Clinton

Administration, the IDEA was up for reauthorization and the Clinton Administration had it’s Bill first, so we worked in a bipartisan way to get a piece of legislation introduced,

26 which basically became the legislation that the Congress was introduced on the House and Senate side and lots and lots of work, and lots of issues, and lots of problems over the course of the years eventually became the ’97 Reauthorization, and did a lot of work then on the Regulations. So that period of time, on Special Education, was really, I was the

Assistant Secretary and then I had three Heads of the different components, so the

Director of the Office of Special Education was a wonderful guy named Tom Hehir, who’s now teaching at Harvard, and he had a great deal of experience in Boston and

Chicago, working not just in Special Ed, but Title I also, you know, so basically worked on education for the poor and minority kids in inner-city areas, but also had a great reputation for working with the Center for Independent Living in Chicago. He really was, is progressive, very much into inclusion, really understands education very well, so he came in as our Director for Special Ed. Then we had the Office, the Rehabilitation

Services Administration and we brought in a great guy named Fred Schroeder, who was blind and had run a state agency in New Mexico in the area of vocational rehabilitation services, and so thereto, we worked on monitoring development of legislation, implementation of the legislation and the regulations. They also had money to do research. They support historically black colleges and universities and they have money that does training of, at universities to train individuals to work in the field of rehabilitation. They’re, they’ve been really the largest program in the United States, funded in every, in all 50 states to work with helping disabled people get jobs. Your daughter might have received services from them, so DORS, Department of

Rehabilitation Services. Well, Illinois’ rehab has been run by disabled, the heads of the agency have been disabled people for many years, and I can’t really compare Maryland,

27 but I can just say that I believe in states where there have been Directors who have

disabilities, we’ve seen like in Massachusetts, in Illinois, in California, are again some

other states at least appear at the time to have more extensive support and a better

understanding, but so we ran the federal program, and then the National Institute on

Disability and Rehabilitation Research, which was headed up by a woman named Kate

Seelman, who’s hard of hearing and their job is basically in the area of research, and so

they have a very broad portfolio. They do work in the area of technology, deafness, they

have research in training centers, they have centers that are doing work on spinal cord injury, traumatic brain injury, children’s issues, they, they, they, Kate really led a great effort to expand the capacity of the research base within NIDRR and she had a, they’ve done some really great work. The Kurzweil machine was started by NIDRR. The

Microsoft ’95 software, which had for the first time accessibility features and was the

result of work that we had supported in, with a guy by the name of Vanderheiden, Greg

Vanderheiden, who we helped support go out to work for a period of time with Microsoft

because there was, in Washington, because they were, the software they were about to

produce was not going to be accessible. So it was a very exciting period of time. We

had, you know, there were others, but those were the three Directors and my Deputy, I

had two deaf Deputies, a guy named Howard Moses, who got sick after a number of

years and had to leave, and a guy named Curtis Richards, both who had disabilities. So

we had very knowledgeable, experienced, mainly disabled people in leadership positions,

so I think, and we worked really, really hard and I think were very successful in doing

bipartisan work, networking work, bringing minorities into the system who really had not

had voices significantly before, and yeah, so then I left there and then I consulted for,

28 well, I left the day Clinton left because my position was political, so I left on the same

day in January of 2001, and we worked up to the very last day. Fred and I were working on some Regulations, Fred Schroeder, and to the very last day we worked and getting things implemented and put into place as much as we could.

So then I did consulting work for about a year and a half. I had a company called

Heumann & Associates. I was doing different work, public speaking, did a project with a

Foundation in Cincinnati and a project with a Foundation in California. I was on the project in, Cincinnati was really looking at issues around helping them look at how to inclusion of disability in looking at the work that they were, it was looking really at the work that they were doing and what more they could be doing to advance work in disability. So and then the work that I was doing in the Foundation in California was basically looking at ways of integrating disability into health care projects that they were

working on, Foundation projects, and then I applied for a job at the World Bank and I got

that job. So they had this new position that they had created called the Advisor on

Disability and Development for the World Bank, when Jim Wilkinson was President, so I

worked at the Bank until, I left the federal government and then consulted, and then I

worked 2002 until 2007 with the Bank, part of it was working in terms of disability for

their employees, but that wasn’t my main job. I didn’t work in HR. I worked with

Human Development Section, so basically I was hired to continue work that they had started, but they hadn’t had a position as an Advisor. They hadn’t had any, it was, it hadn’t really become a firm, acknowledged, part of the work of the Bank, so when they agreed to hire, to create this position, and I was hired, we basically, Wilkinson was great and so we were really able, the objective of the Bank was to look at how to integrate

29 issues of disability into the work of the Bank and get the Bank, the Bank does projects at country levels all over the world, for middle income countries, but at that point, there was

no real information that the Bank was gathering on who the population of disabled people

were in the various countries, which was a very big problem because if they weren’t, the

Bank runs on data, show me the data, show me the economic reasons, blah, blah, blah, if

you didn’t have the data, if you hadn’t done economic analysis, I mean logically

speaking, I think eventually we were able to get some people to see that, you know, look

at the data in Western countries, things will only be worse in these countries, but what,

what I was able to do was with support, both from the President’s Office and The

Kennedy Foundation, actually, The Kennedy Foundation paid for an economist to come

work in the disability team for a year and a half at the World Bank, then that position was

picked up by the Bank, so it became a regular Bank staff person, and we were able

through various mechanisms of funding to get each Region within the Bank to do some

work on disability, looking at what the, looking at what they knew and coming up with a

plan for what they wanted to do in the Regions, and particularly in poor countries, there’s

not a lot of data gathered and that’s one thing that we worked on was we worked with the

United Nations Data Statistical Office, and CDC and other statistical agencies from

around the world on putting together a program that defined six questions to get

developing countries to use those questions on data analysis and disability. So my

experience at the Bank was, when Mr. Wilkinson was there, was great because we helped

to set up something called The Global Partnership on Disability and Development. I did

a lot of traveling and I think yeah, of course, I mean I think, you know, like in this country when you really look at where disabled people are today, while we’ve made a lot

30 of advances, you know, the high unemployment rate for disabled people, for significantly

disabled people, I mean basically now that they’re collecting some census data, not

census data, unemployment data, for those people who are looking for work, who say

they have disabilities, about 14% are unemployed, but of course, a substantial amount of disabled people have stopped looking for work.

So just like any other issues around disability, she just shut down on everything

else except the volunteer job for three nights a week at the Strathmore Music Center

because she’s had very bad experiences and I think, you know, it’s, it’s interesting, when

I went to school, elementary school, when I went to camp, I went to a camp and a school

that was racially integrated. I mentioned that earlier and in some way, you know, we

always felt this bond across anything. I mean, I went to school and I went to school with

African-American kids when the school was white. We went to camps, I mean, it was

the North and the disabled students were all integrated, but that was no place else, you

know, at least in New York until, as I had talked to you earlier, in the ‘70s when they

finally, you know, with the District 18 and all that terrible stuff that happened, but so we

were friends with each other and even though we went back to our respective

neighborhoods, we went to camps where we were integrated and then went back to our

respective neighborhoods. We went to weekend programs that were racially integrated

and I think the common theme there was disability, and certainly people who came from

different socio-economic backgrounds, ethnic racial backgrounds, regardless of their

social status, had experienced discrimination in additionally different ways, but I think

there’s always been a bond amongst many of us because intrinsically, the issue of the

types of experience that your daughter faces, we’ve all faced, whether we’ve been to

31 school or not, whether we, you know what I mean, it hasn’t been based on qualifications,

it’s been based on discrimination, and I think that one of the real problems is that those types of issues haven’t really been addressed successfully enough. I think the Centers for

Independent Living and, I mean, just some of the disabled student programs really have been able to help people kind of overcome those, I think it’s kind of an inner strength.

Did your daughter go to segregated schools or was she in integrated classes or was she in, so she didn’t go to special classes, but now her field is Theatre, which is a hard field for anybody. You know, the movement has made incredible progress in the United States and internationally, but I think there are still obvious deficits and others that don’t really

get discussed that much, and I think one of the weaknesses in this country is that the

movement itself is a still pretty white movement, and obviously in other countries it’s

different because in an Asian country, you’ve got Asians, in an African country, you’ve

got Africans, and so when you come together for international groups like Disabled

People’s International and other organizations like that, you naturally have a much higher

degree of diversity. It may still be a more racially and ethnically diverse body and a more

economically segregated because still people who have advantages are more likely to

have come from middle-income and wealthy families, education, well, self-confidence is

a very interesting issue because, you know, I’ve had to struggle a lot on issues of self-

confidence with myself because, you know, I went, I, I didn’t go to school until I was in

the fourth grade, which in some way my recollection was, you know, there were issues

why I was not going to school and blah, blah, blah, but I was younger, so I would play

with my friends in the neighborhood. It wasn’t until I went to segregated classes that I

really, you know, there were mixed things that were going on. One, it was great that I

32 was with other disabled people because it’s the first time that I really knew other disabled

people and it was an opportunity for me to really have discussions with my friends that I couldn’t really have with my family.

I mean, my family, we were Jewish and they had escaped, you know, the

Holocaust and they had, yeah, my parents, their, I mean, my mother’s parents were killed in concentration camps, my mother’s grandmother, a lot of relatives, my father’s parents were killed, his grandmother, so, you know, they, they had, and my uncle had stayed there until like 1938, and luckily, my, my mother was an only child. She was sent out of

Germany in like 1935, never saw her parents again, she was an only child and she was twelve, and she was sent to Chicago to live with someone she didn’t know. I mean, the person was a distant relative and apparently what happened was, a friend of this distant relative who was from Germany, but had moved to the United States, came to Germany and saw what was going on and called this woman who said, “If there are any kids that are my relatives, get them out.” She obviously was a very well connected person because

my mother was out of Germany in two weeks because this woman saw the handwriting

on the wall, but her parents couldn’t get out. She was an only child, she doesn’t know,

and she had no aunts and uncles here. I don’t know how they told my mother she was

leaving in two weeks, you know, well, there’s, they, the show I did a video of my mother,

but you know, one of the criticisms of the Spielberg videos is that they didn’t necessarily

have people who had really been trained in how to do oral history.

Yeah, but I think, you know, your daughter is not unique, but you know, for

myself, so, but in my view, you know, in some way, you have to accept what is and work

towards changing it and, at least for myself, so being able to be a change agent and

33 looking at what I can do with others, because that’s been my style, that’s been very

important, but you know, the discrimination goes on our whole lives, and you understand

that, but I think, you know, you know, one of my feelings is that, you know, there is a

real need for disabled people to be able to be together to discuss our own issues, but also

to struggle within our own issues about the differences not only among ourselves as

individuals, but our different experiences because of other types of discrimination that

people may be facing, whether it’s race or sex or religion or whatever, and we haven’t

really gotten there yet as a movement, I mean, in my view. As far as it still being mainly

a white movement, you know, when you get to the local community level, things are

changing at the local level, but if you go to the national level and impart, you know,

that’s not even illogical, it’s because of how the leaders emerged, and then I think that

typically in movements, the more experience you have, you are in positions, but we, we

were able to make some changes, for example, within the parent communities that were

funded by the federal government because some of the minority parents basically fought

to get separate funding to set up parent training programs, lesser amounts of money

because what was basically happening is under the IDEA, there is money for PTI’s, and

the PTI’s are Parent Training Information programs, and they’re basically supposed to

educate parents who have disabled kids or under the IDEA about what the law is, what

their rights are, you know, a support network, but also to help them really know what their rights are, and what was happening is that you’d get some parents from inner-city

communities, for example, that would apply for this money and they weren’t getting it

because they didn’t have an organization or the organization was new, they didn’t have

the same experience, so if you just graded the grant application, they didn’t get it, but

34 they were able to get the smaller amounts of money, which is what they wanted to start a program, so, because if they hadn’t been incorporated or if they’d never had money before, at that time, getting a $200,000 grant, they didn’t have the experience, but if they got a $50,000 grant, they could handle that and then they, they would get stronger and could actually compete for the larger program money, or they could then become more of an equal partner with an existing parent training program. So I think when I was going to those meetings, you began to see a more diverse group of people participating in the meetings. That is true also when you go to like the Center for Independent Living meetings, where they’re not just sending their Directors, but where they’re sending staff and people who get services, but like the disabled student services, we just go to the annual meetings and you just look around, and I think that’s a very important issue. I think you’ve seen more also in the youth movements where they’re becoming more integrated. They’ve got the, many of the states have these youth leaders. Governor’s

Committee’s have these summer youth programs and those programs, which go like for a week, are more diverse. So, you know, you can see things happening, but, but they’re not where they need to be yet, and I think one of the problems also is the other movements,

African-American, Latino, Women, have not really brought disabled people into the movements, so you’re kind of out there on your own, and I think, I think that’s true for a lot of, you know, my experience as a disabled person was, as I said, when I finally got to go to these segregated classes, my father talked to my mother about putting me back on home instruction at one point because academically, I was very far advanced when I went into school. I was at like a twelfth grade reading level in the fourth grade, but then things started going bad because there was really no instruction, and my father was like they

35 were warehousing me, but for me, it was a time when I started to see by myself at the age

of nine, if there were kids in my class who were 18, 19, 20, what’s wrong with this

picture, but they also had never been taught how to read and I would, they were my

friends and I would work with them on trying to help them to learn to do things that people just said they can’t do, and that’s really where a lot of my interest came in, and

then I would go to these segregated Saturday programs where in my community, nobody ever, it’s like what I had said, when I went to the University at LIU, I would go home on the weekends because I didn’t get, it wasn’t just the attendant stuff, but I didn’t get asked out on dates, I didn’t go to my Senior Prom in high school, and I think, you know, I had other friends who had disabilities who were much, much more kind of out there.

I was kind of verbally always really good, but this kind of hesitancy that I still see in myself, you know, today, and it’s an issue of self-confidence. I mean, in some ways, it’s like knowing that, well, believing that, and it may not always be true to the degree that it was before, but, you know, I mean, some of my first experiences, when I graduated from high school, I had told you I think this, when I graduated from high school, I was getting an award and the Principal didn’t want me up on the stage. So I, but this was

1965, and so I wanted to go home. I wanted to go home because I was, what I do when

I’m typically angry is I cry instead of being angry. What happened was, my father, we were, we were at the graduation and it was called the Evelyn Votano Award. A kid in my class had died and they had set up an award for her for achievement and I still have the award, it’s right here. It’s from Sheepshead Bay High School and it says the Evelyn

Votano Memorial Plaque, Outstanding Service Character Youth, June 1965. We were, we had had our practice of graduation with everybody and, anyway, it was, we had the

36 graduation practice at our high school, no problem, we were at Brooklyn College and the

stage wasn’t accessible, and my father was, literally, we were going to the steps and he

was going to pull my wheelchair up by himself, a manual wheelchair, and we did that all

the time because things weren’t accessible, and the Principal came over and said no, I

shouldn’t come on the stage. I could sit in the front and he would come down and give

me the award and I said I wanted to go home, and my father talked to him and said I was

going on the stage, but he insisted that I sit in the back of the stage and then he came to

the back of the stage and gave me the award. So, I mean, I think it was pure

discrimination. I have no idea because, I mean, that’s obviously what it was, whatever

rationale, you know what happened, everybody was, you know what I’m saying, it’s like

there’s no way to get into any kind of an analytical discussion about what happened. I never saw the guy again or never talked to him. He was the Principal, I mean, I was seventeen years old, and, but no, so I mean, it was just one of many things that go on, on a day-to-day basis, and I was really glad that my father and mother wouldn’t let me go home because, you know, you just, I was embarrassed, you know. I mean, those kinds of things, they’re humiliating and they stay with you. I mean it’s like why is this happening.

There’s no time to ask and nobody would tell the truth anyway. It was clearly happening because he didn’t want my father to pull me up the steps. I mean, you could have gone from it’s a safety issue, we don’t want something bad to happen, which is bullshit anyway, because if that’s really what it was, once my father had me up on the stage, he could have easily put me in an appropriate place, not in the back of the stage, not clearly saying I will come back to you. I couldn’t push myself up and he didn’t ask somebody to push my wheelchair forward or anything. So it’s like these situations, which kind of just

37 hit you in the face and, I mean, I think as I’ve gotten older, I’ve definitely learned how to

address them and search myself, especially when it’s not just something for myself.

So when I’m working in a group and I’m working on what I define as a civil rights, human rights issue, then, you know, being outspoken, working with people, that’s all very easy to do, but for many years, I wouldn’t, I would not go to an event by myself, you know, if I was invited to receptions, I would go with somebody. If I didn’t have somebody to go with, I wouldn’t go, and, you know, it’s just, when I was looking for a job after I was graduating, this is, I graduated in June, you didn’t take the teaching exams until the end of the Summer or the Fall, so I was looking for work and I was, I applied for

a job in Brooklyn and it was a social work job, and I had this great conversation with this

person on the phone, you know, we talked, we talked, this great, she was so excited and

blah, blah, blah, and we set up a time for an interview, and I realized when we got off the

phone that I hadn’t asked if it was accessible. So I called back and I said, “Oh, I’m in a

wheelchair. Could you please tell me is this place accessible?,” and everything changed.

She had to get back to me and when she got back to me she said basically they didn’t

want to do the interview. There were no laws at that point. So that’s why when I was

denied my job as a teacher, but I wasn’t even having to do that alone because there was

this student, and I’m terribly embarrassed to say at the moment I cannot remember his

name, but he was a stable guy in a motorized chair and he was a person of small stature,

and he was a stringer at The New York Times at that point, and he got, this was in the

‘60s, and it was extraordinary. God, I can’t believe I can’t remember his name. I never

saw him again after this thing happened. So, but he got Malcolm, oh I have to look it up,

first name was I think Malcolm, who wrote a piece on here you are in 1969, where they

38 have a tremendous shortage of teachers and they’re denying somebody who’s met the

qualifications, a job as a teacher, and then the next day, The New York Times did an editorial, and then Daily News did an editorial, the Post did an editorial, and there were, there was basically coverage on this for like about a year all across the country and it was all from that one piece, and it was as a result of all of that that we set up Disabled In

Action, because as I had talked to you about, you know, I was getting letters and people were calling and so we just decided let’s put it all together and see what happens. So, you know, for me, I’ve always found that it’s important to be in a group. In part because,

I mean, when I ran for City Council in Berkeley and I lost, in ’90, what was, what was, I had this one experience. I’d lost the election, but I was with a group called BCA,

Berkeley Citizen’s Action, and a number of people had won from the group. So there was a party and we were outside in this, you know, garden area and I was talking with a bunch of people in a circle and they all started talking about going to the movies. So a couple of things happened to me. I don’t assert myself because the conversation was becoming very weird because nobody was including me in the conversation and my feeling is, you don’t want me to be there, I don’t want to be with you either, but it was really weird and, because it was this level of discrimination that this progressive group would never acknowledge. It was a racially run ______group, right, so I remember calling my friend Kitty up, who’d been very involved with CIL, with, she went to University of Illinois. She went to Nugent’s program, but she was a Socialist worker.

She was part of the Socialist Worker’s Party, and she was very strong and very out there, and her disability had become more progressive over time, so I think, you know, she had a different sense of self than I did as an individual, but so I called her up and I said,

39 “Kitty, am I a Martian?,” and I always talked like this, am I a Martian. I really need to write something down, am I a Martian, and we laughed about it, but it was like I needed this ability to speak to somebody who would really understand being in a situation like that, and I think that’s, you know, for me, I talk about the disability movement as something of people coming together to go apart, because I find this real need to come together and be able to talk to people and kind of psychologically prepare myself for war, even when it’s not like a demonstration. It’s like in some way, going out on a daily basis in a non-disability environment. I don’t mean on the street. I mean in a work environment, in a social environment, because people say and do things all the time, you know that, when you’re completely unprepared for it, you know. You can be in environments where you’re prepared for it, you know, you’re dealing on a budget, you’re dealing on legislation, and there, you kind of come there prepared for whatever, but, I mean, I remember when I was campaigning, one of the guys said to me, a guy who was a member of Council, “Be careful about how you move your wheelchair.” So it really had nothing to do with the way I was moving my wheelchair, it was his thing about how I was moving my wheelchair, whatever that meant, and I was just about to get up and give a speech. So just like in the high school, there was no time to say, “What’s that about?

What do you mean?,” but it’s like, “Oh my God, what is he saying? What does he mean?

What is he thinking? What do I need to do?,” and, you know, if my list had gone straight kind of thing, but then it’s just like, “Okay,” but you know that people have those thoughts all the time.

It’s, it’s, it’s like when we did a set of focus groups when I was an Assistant

Secretary. I wanted, I wanted to get people in an environment where they didn’t know

40 that they were coming to talk about employment of disabled people, and I didn’t want

their, I didn’t want it to be run by disabled people. I wanted it to be a focus group. So

we put a contract out and we had a firm that did focus groups that apply and we did two

focus groups in Baltimore, two in St. Louis, and two in San Francisco, and it was, so they

selected employers of small, middle, and large companies. They selected headhunting

companies, small and large, and people were invited to come to do a focus group on

employment. So it had nothing to do with disability, but twenty minutes into the

discussion, the facilitator moved it into a discussion on employment of disabled people.

So, and they were done behind one-way mirrors. So I went to the ones in Baltimore and

San Francisco and they were fascinating. First of all for me what was fascinating is

people really believed that the facilitator would not say what happened. They felt a level

of confidence that they could tell the truth. They maybe didn’t tell the whole truth, but

they told truths that they probably never would have said outside of this enclosed room,

and they said amazing things, not just about disability, but in one of the companies in San

Francisco, I guess the first group had been so great that they thought, “Oh, let’s video these because they’d be great to show,” but then we couldn’t do it after this one particular

one because this guy worked for a big company and he said, a Japanese company, and he

said, “Well, basically, blacks don’t make it in our company above a certain level and this

is the policy we follow,” and these are my words. It wasn’t, it wasn’t, it wasn’t a written

policy, but it was clearly understood, clearly, so that clearly meant that disabled people were not going to be able to move up the ladder, even that high, but, oh no, we had this one gentleman, a young guy like in his 30’s. He, he talked about his daughter, who was

five and was in kindergarten, and he said, “My daughter goes to kindergarten. She’s got

41 a girl in her class with Down’s Syndrome. My daughter is going to be very different than

I am because I wouldn’t consciously hire a disabled person,” but I, what was going on, but he says, “So my daughter will be different.” He wasn’t old. As I said, he was in his

30’s. There was something going on in Baltimore at that time, which we of course didn’t know about when we set these up, where there must have been either one of the deaf organizations or somebody, they were working on helping deaf people get jobs. So I remember the people in the room had had applications from deaf people and as one of the people in the room said, “We know that if we don’t interview people, we’ll be sued, so we are interviewing people, but we will not hire,” and, you know, the way the law is, you have to, you have to allege discrimination, and you have to have enough information to allege discrimination, and that means that the information has to come from inside the company and they won’t, or I mean, what they probably could have done would have been to look at how many deaf people actually went to look for jobs and how many were hired, and look at whether or not there were multiple people that went to a particular company and were they hired, and also look at their resumes to see where they qualified, but if they really were qualified, then why weren’t they hired, and we had, they were fascinating. They were really fascinating to see. One guy had had somebody working for him for ten years and he had a seizure and he’d never told him he had epilepsy and he was so angry. So the facilitator would come back, like once or twice during the session and ask me if I had any questions, and they never saw me, and for this particular guy I said, “Well, he was a good performer. So if he came to you and he presented himself and said he had epilepsy, would you hire him?,” and he said, “No.” There was another story where a woman had worked at this company. She’d come from a temp agency. She was,

42 she was an assistant to the secretary for the head of this pretty big company, and one day,

she had her medicine laying on her desk, a prescription for seizures, different person, and

the head secretary saw it. You know, it had nothing to do with, you know, drug use. It

just happened to be on her desk, but the woman had never seen it. She called the

company that had referred her. The woman had worked there three years and said they

had to get her out of there. If her boss knew that this woman had epilepsy, she’d be fired.

The woman left. There was almost a fisticuff that happened in one part of the discussion

between a smaller and a larger headhunting company where the woman from this, the

owner of the smaller company said, “If I have to equally qualify people, I will not send a

disabled person out because I will not get business from that company again,” and this

other person said, “You know it’s against the law,” and she stood up and she said, “I’m a

little company. I can’t afford to do this.” I mean, it was, she was trying to survive, so I

mean, these were just randomly selected people. Now I’d love to do that again, now,

because you’re moving. This was in ’96 or ’97.

I would say that probably some things have changed because you do have more

people who’ve gone to school with disabled people, well, the universities and other

schools. I think this man who said my daughter will be different was right, not

necessarily his daughter, but maybe because, you know, as I would visit schools, I

remember I visited this one elementary school in, in Massachusetts, which was run by a

guy, he’s running it still, he’s retiring this year, called the O’Hearn School, and the

Principal, but the Principal when he entered education had no disability and over the

course of his work he was becoming legally blind, so he went to ask what should he do.

His intent was, “What should I do to be able to keep teaching,” and he was told, “Well,”

43 he should go on Disability. He said, “I don’t want to go on Disability.” He never went

on Disability and his vision’s gotten progressively, his sight is gone less and, but he

worked with this guy Tom Hehir, who became my Director of Special Ed, but Bill, I’ll

have to go look up his name, is still the Principal of the O’Hearn School, but what’s great about what Bill did is he basically worked with Tom at the beginning of this, Tom then went to Chicago, and said, “You give me the disabled kids and I’ll take them and I’ll include them in the school,” and Boston is a choice area. It’s where families get to choose where their kids go to school, and eventually, his school has become a very integrated school. It’s located in Boston and, but when I was visiting the school, I had a parent, I always met with parents, so I met with this one parent. She didn’t have any disabled kids. She had two non-disabled kids. She said, “I will never let my kids go to a school where disabled kids are segregated in the school, because my kids have been at a school like that before and they would see going to be with the kids in the disabled classes as an optional thing.” I mean, you know, we were kind of like on exhibit, you know, we were obviously inferior or we wouldn’t have been in these separate classes and she said, “I’ll never let that happen again because I want my kids to grow up in a diverse environment,” and he had very significantly disabled kids in his regular classes, and he had support, but you know, kids with significant mental retardation had physical disabilities and, but his school, from the support staff in the school to the Principal all had responsibility for all kids, and so I presume that some of those kids who come out of that school are both the disabled and non-disabled kids, but then when they get to Middle

School and High School, is where things still become very problematic, but you know, you’ve got the money to hire the lawyer. So when you look in the District of Columbia

44 and you see, you know, the kids who get out of the District and go to private schools

because their parents have the money to be able to get them out and then you see the

other kids who are stuck in these bad schools where they’re segregated in bad schools.

Fairfax has money, but definitely had a fight with them, even if you were white and had money and were meant, I mean, this one guy that I, two guys that I knew in the ‘90s, both of them, one worked for Senator Lott, one worked for another, but that was what I thought was really interesting, they were so varialant in their, they didn’t care who you were, you know, you could come from a very, you know, one guy let his kid go into a segregated program, the other father fought them tooth and nail and won, but you know, why? I mean, I, I, it’s a rhetorical question, but so for your daughter, and many others like your daughter, I think really it, it is very important that other movements really bring in the whole body of people, but even with that, there is a real need for, and you know, one of the things that’s happened with all the integration, which clearly is important and I wouldn’t want it any other way, and I assume it’s similar in the area of race where black kids started going to schools that were mainly white, you know, how do those kids deal as they grow up? My presumption is, you know, like for me, you become a fighter, you become a whatever, or you also, you know, you, you know, it’s, as illogical as it is, it’s still questioning yourself and, I mean, I remember with the, the teaching when I did file this lawsuit, I was terrified, you know, am I qualified, and if I’m not, you know, what happens if I don’t do a good job. They’ll never hire another disabled person and we used to joke about that and say, “Well, let’s just see, if they hire a non-disabled person who doesn’t do well, does that mean they’re only going to hire disabled people again and they’re not going to hire any more non-disabled people? Of course not,” and of course,

45 it’s the same fear that blacks have and what is the first is not even necessarily the first.

It’s the first person over and over if they failed and they’re a mark on everybody, and

since so many places today, and does your daughter use personal assistants? So she can

do everything herself.

I left the World Bank to take this position as Director of Disability Service for

D.C. Well, I think, you know, just leadership in big institutions is very important and when Mr. Wilkinson was there, he was very important for a number of reasons. He, he was a leader. He talked about disability. He supported our work. When he left, things really changed. The new leadership didn’t have the same vision or the same attitude.

There was, no I, I had a lot of problems with the guy that was my supervisor. He was my supervisor when I came there. See, Wilkinson was on top, right, and I was, our unit was placed in a unit within the Human Development Network, and this guy, not for the stuff here, but just basically, had some weird stuff around disability and other issues, but never could act on it because Wilkinson respected me, respected my work, and when he left it was like night and day, and I knew about it from the minute I got there because I’d been told about it, and because I was experiencing it and it was, but and that was also, anyway, so at any rate, so I worked at the Bank until ’07, like April of ’07. Then I had gotten a call that, I had started to look for another job and so I had interviewed for a couple of jobs. I’d gotten a call from a headhunter, from two headhunter companies about different jobs and one was for this position as the Director. It’s the Director of the Department on

Disability Services, which has two agencies; one, the Developmental Disabilities

Administration, and the other the equivalent of Maryland DORS. We call it RSA. So, I was, it’s a Capitol level position in the ______Administration, so I was

46 hired for that position. I was offered that position. I was offered another position and I took this position, and it’s been a very, I have a great deal of respect for the Mayor. He’s a very strong man. He’s going to make things happen, in spite of everything, and I think that, but he, he won every precinct when he ran, he won every precinct, so I think he’s got a very good chance of being reelected, I mean, yeah, I mean, I’d be completely surprised if he even had significant competition. I’m sure there may be people on the rise, but I don’t, I couldn’t give you a name, but at the end of the day, so it’s been, it’s been a learning experience for me because I’d never worked, you know, at, I mean, this is a state, but it’s not a state and it’s a state, a city, county, blah, blah, blah, and I think, you know, that the District itself, you know, for me, it’s a very interesting learning experience because, you know, I’ve lived here since 1993, but when I took this position, and I lived in the District, but because of my position in coming from California, I voted in

California and I voted in California until I actually took this position when I registered to vote here, and it’s very, I can’t even really completely articulate the fact that, you know,

I’ve chosen to disenfranchise myself because that’s what it really is. I mean people have lived here their whole lives so they have no concept of, I mean, Eleanor Holmes Norton, a great woman and a non-voting Congressperson, and they’ve got someone called a

Senator, a shadow Senator, but in reality, I think it really is one of the causes of people not to fully engage. I mean they vote for the Council, for us, and the Council members, the Mayor, and the non-voting delegate, but I don’t know, and I think he’s been very good in many ways. One way has been that he was the most qualified person, so the perception that you had to hire District only, which is a big perception, it’s allowed us to bring in people from all over the country who had more experience, and then there’s been

47 issues there too, you know, do you find, you know, I, I, I look at, the staff is more racially diverse now, but I’ve also felt for some positions, I, I have to find a qualified, you know, person of color, and a disabled person. I can’t, I can’t do the easiest because I just don’t think it’s right. So I think, you know, he’s got a racially diverse Cabinet and he’s got some great people working in the Cabinet, and I, and you know, working with the staff on really, you know, trying to do the right thing, to ensure that, because they had such mixed up leadership, you know. In one of the agencies they had like ten people in eight years, so, no, in the Developmental Disabilities, I don’t do HR. At the Bank, here, I don’t do HR. I help HR do their job, but I’m not a HR person, but so really looking at how to improve the workforce, how to give people leadership and training and guidance, and when that’s not working and you have to change people, but I think, you know, what we’re seeing here is things are slowly changing, which is good, but you don’t have a demanding citizenry here, like I’ve seen in, I mean, I don’t know what the angst issue is.

Well, on the DDA side, development, we basically ensure that people get any and all services that they need. So you have to have an intellectual disability. A lot of our support is from Medicaid, so we have anything from people living in natural homes with their families to people who are living in group homes or living in their own places and we provide them with anything from a provider that ensure they get all services they need

24/7, day programs, supported employment, ensure their health care is taken care of, blah, blah, blah, but in the middle of this, it’s supposed to be person-centered so the voices of the persons themselves are supposed to be the voices that are predominating what happens, but that’s a real culture change that we’re working on. On the RSA side, it’s working with disabled people who want to go to work, helping them get the training

48 and education that they need and helping them find jobs and getting them into the

workplace is part of what we’re supposed to do, but excellent, we’re not. I’m joking. I

was just saying, you know, it’s like, so one of the problems here has been that the agency wasn’t run well and I brought a new guy in who started in September and he’s good.

He’s got a lot of experience. I started as the Director May 7th of ’07, two years ago, right after I left the Bank. I left and came here.

49