Attorney, National Policy Advocate, and Spokesperson for Disability Rights Organizations, 1976-1990s
I Childhood, Traumatic Injury Accident, Boalt Law, PDSP, and CIL, 1950-1976
1. ## This symbol indicates that a tape or tape segment has begun or ended. A guide to the tapes follows the transcript.
Childhood in Massachusetts, 1950-1967
BonneyDebby, let's start out with where you were born and when, and a little bit about your childhood.
Kaplan
Okay. I was born in Cleveland, Ohio. My birthdate is January 17, 1950. We did not live in Cleveland very long, and in the beginning of my life my parents and my older brother and I moved a lot. My father was getting his Ph.D. in social work and had various graduate positions doing research in different places. We stayed in several places when I was very little for a year, less even.
Then I grew up primarily in Cohasset, Massachusetts, which is the south shore of Boston, from third grade to seventh grade, which was an absolutely beautiful, beautiful place. I spent a lot of time outdoors. Then we moved to Littleton, Colorado, where I went to junior high and high school, and then moved to California right after I graduated from high school, and I started undergraduate school.
My family consisted of me, my parents and an older brother.
Bonney
What's his name?
Kaplan
Alex. He lives in Petaluma now. I don't know. It was an interesting childhood because my mother [Nadia Kaplan] stayed at home and was a first-generation Russian immigrant. She didn't really know that much about American culture and never really
Bonney
Did you learn Russian?
Kaplan
No. It was the 1950s, and the height of the cold war. I have a vivid memory of a classroom session about the--what did they call it?--the melting pot of American culture, and everybody in the class was supposed to say where they were from, where their parents were from, where their family was from, and I said, "Russia," and everybody booed and hissed [chuckling], which, of course, you know, meant a whole lot more to me then that it would now. And so the last thing I wanted to do was learn Russian, which I am very disappointed now I never did because even if I had learned a little bit, then it would be easier to pick it up now. And I've been to Russia a few times and wish that I had spoken the language.
Bonney
Let's stop--
[tape interruption]
Kaplan
I mean, there's a lot to say about my childhood, but that's probably enough.
Bonney
What does your brother do?
Kaplan
He is a contractor. He has his own firm. When he was a kid, I remember he used to like to build walls and dams and things, and he still does the same thing, only on a much larger scale. I find it rather amusing. It's just the same old stuff.
Bonney
Only he gets paid for it now. Makes a living.
Kaplan
Has places to play around with money.
Bonney
What were your favorite things to do as a child? You said you were out-of-doors a lot.
Kaplan
Yes. I remember in elementary school just playing in the lush forest in Massachusetts where I lived and spending a lot of time on the ocean. My mother had me take ballet because she thought it
I had a few friends but was not one of the popular kids. And then went through a rebellious, sort of hippie-beatnik phase in the late sixties that carried me through into undergraduate school. But I don't know. I spent a lot of time with friends, exploring the woods and playing imaginary games and getting tadpoles out of little ponds. That's a great, lovely, lovely place. So much to explore and to do and a pretty safe environment for kids.
Bonney
What were your hippie days? What did you do?
Kaplan
I started out in Denver, hanging out at the Denver Folklore Center. I taught myself guitar when I was in high school. I would hole up in my room when I didn't want to have a thing to do with my family and just spent all that frustrated, angry teenage energy learning to play guitar, and singing. I wrote my own songs and played a lot of music.
Would go off with my best friend in high school, who had her own car, which was great. And tell my parents I was staying after school for speech or something, and then go off and hang out somewhere with my friends [chuckling]. I don't know. I enjoyed being a rebel in high school because I didn't like the popular kids. I remember I read [J.R.R. Tolkien's] The Hobbit and could sew and I made my own hobbit gowns that I wore to school with hoods on them and stuff. Everybody thought I was very odd. I was just very ahead of my time.
I enjoyed standing out. There were other girls who would wear, like, lots of eye makeup and white lipstick. Do you remember that?
Bonney
Oh, yes.
Kaplan
I didn't quite go that far, but I was sort of in that end of things. It was great. I mean, it wasn't just rebelling against the parents, but it was rebelling against the dominant cheerleader, high school culture, which I found revolting.
Postsecondary Education and Disabling Accident, 1967-1973
Bonney[laughing] Now, you moved to California, you said, in?
Kaplan
In 1967, right after I graduated from high school. I took summer classes at Stanford [University] because Dad was teaching at Stanford, and then started as a freshman at UC Santa Cruz [University of California, Santa Cruz] and went there for all four years and graduated in '71.
Bonney
What was your major?
Kaplan
Religious studies.
Bonney
How did you get to that?
Kaplan
Well, I wasn't all that serious about academics at Santa Cruz. It was a time when you didn't even think about what you were going to do after college. You didn't think about what you were going to do to earn money. I mean, it was incredibly inexpensive to live back then. My rent in my last year of college was seventy-five bucks a month. No, no. The apartment was seventy-five. My rent was thirty-seven-fifty because I had a roommate. I remember the first quarter, the tuition was eighty-nine bucks at UC in 1967. So it was pretty inexpensive to live, and we just sort of assumed that we would, you know, just figure it out as we went.
I got into religious studies because there was this really interesting professor who I wound up studying from, named Lewis Keizer, who was into mystic Christianity, and that seemed pretty cool. It was sort of magical. I wound up taking some classes from him and ended up learning research, took Koine Greek, which is a language the Bible is written in, and did some translation of original gnostic text from the Apocrypha, and that was my thesis. So it ended up teaching me some really interesting research skills and study skills, which, God knows, I needed.
Bonney
In this time period, were you involved in any of the anti-war demonstrations?
Kaplan
Oh, yes; oh, yes.
Bonney
What did you do?
Kaplan
I remember in my freshman year, actually, coming here to Oakland, somewhere around here, for a big anti-war demonstration because the army recruiting station, center, was right around here where
Bonney
[laughing]
Kaplan
I have no idea how we rationalized that, what on earth that had to do with protesting the war, but it was what we did [laughing].
Bonney
And how did Stanford take to that?
Kaplan
Oh, I don't think Stanford paid that much attention to us [laughing]. We were just sort of irrelevant. We were this hippie school down in Santa Cruz, where everything we did was very artistic and creative, and we always felt sort of inferior to Berkeley because that was a serious school.
Bonney
Was it sort of one-upmanship?
Kaplan
Well, bigger. That was where all the headlines were and where there was just a lot more going on, so we always sort of felt inferior. At Santa Cruz, it was an unbelievably creative time. Santa Cruz was just starting, and we would have amazing speakers come. I remember one professor. I took a class in film from a guy named--I can't remember his first name--Carpenter, who taught in Canada with Marshall McLuhan. Ted Carpenter. There were just so many rich opportunities there. The classes were small. We had all sorts of people come and speak.
I remember every Friday at Crown College, which was the school I went to, there would be a special dinner and performances. We had John Cage come, and they danced, and I remember seeing Alvin Ailey on campus, and that was early Alvin Ailey. I mean, just incredible stuff. All sorts of people would come and lecture and have--I was secretary of the Experimental Film Club. There was just all sorts of stuff going on. It was wonderful.
Bonney
So you got through your undergraduate degree in religion.
Kaplan
Yes.
Bonney
What were you going to do with yourself next?
I had no idea. I graduated, and all of a sudden I had to take care of myself, and it came as a great shock. I got a substitute teacher's credential and did a little bit of substitute teaching in the public schools. They didn't want to give me the credential because I was over-qualified. I could not understand that at the time. And then I wound up cleaning people's houses for a while and was a waitress in a bar and restaurant on Pacific Avenue, downtown Santa Cruz.
And then, after several months of this, decided that maybe graduate school had some merit because all this stuff was not terribly fulfilling. And so I took the LSAT [Law Scholastic Aptitude Test] and did very well and started applying to law school and almost didn't follow through on it because my parents thought it was a good idea. [laughter]
But I caught myself and went, "Wait a minute, wait a minute. You don't have to do everything that they oppose. Wait a minute. Think for a minute." And so I had applications in to law school and was back at my parents' house, working--they were living in Los Altos, and I was working as a secretary for a publishing company in Palo Alto when I went backpacking with some friends in the Santa Cruz Mountains and dove into a creek and broke my neck.
Bonney
Now, this was in the summer of?
Kaplan
Of '72. Well, it was spring. It was May. And then everything changed.
Bonney
How so?
Kaplan
Well, I spent eight, nine months in rehab.
Bonney
Where were you?
Kaplan
I was at Santa Clara Valley Medical Center. I mean, just everything changed. I couldn't play guitar anymore.
Bonney
Speak up a bit.
Kaplan
Okay. You know, my whole life just--all of a sudden I was in the hospital and not sure of what my future was going to be and eventually realized that I could still carry on. And so I renewed my applications to law school and wound up going to law school just one year later. And so it actually didn't change the course of what I had been planning, but in many other ways, everything changed.
What was the eight months of rehab like? What was your daily routine?
Kaplan
Well, the first couple of months was just surgery and changing from the original hospital in Santa Cruz to Santa Clara Valley Medical Center, and getting stable. Like many people, I had raging bladder infections by the time I got to Santa Clara Valley Medical Center because at the acute care hospital, they just inserted a catheter and had no idea then how to keep you from getting infections. And at Santa Clara Valley Medical Center they stabilized that, and I started going to a combination of OT [occupational therapy] and PT [physical therapy] every day.
I started off doing sort of regular quadriplegic therapy, and then I started moving my legs, and so the therapy shifted to working in the pool to begin to strengthen my legs and get back some tone in my muscles. Walking in parallel bars in the water. And then moved into the gym. So the course of my therapy changed because the goal then was to get me walking out of the hospital, as silly as that was.
I left the hospital walking with one cane, which is how I moved around for quite a while, but I was never really stable on my feet and fell a lot and didn't have a lot of mobility. But that then became a lot of the focus of my rehab. And it lengthened my rehab because it was a much longer process.
I also wound up staying in the hospital for a long time because it was an incomplete injury, and it took a long, long time for the bones to heal in my neck. Ordinarily, you wear the orthopedic collar for a few months, but the X-rays of my bones didn't show that I was healing for a long, long time, and I wound up having to wear the collar for months and months because they were very, very worried that if they took it off I might injure my spinal cord again and everything that I had gained would be lost. Back then, having somebody with an incomplete spinal cord injury was a fairly rare thing. And so they were treating me very gingerly. I was one of their successes. They didn't want to jeopardize that! I'm sure they cared about me, too.
While I was there, because I was there for so long--with several other women who were also there for a long time--we developed pretty close relationships and worked putting together a patients' support group and information group. We would get together once a week and have speakers come in who were people with disabilities who were living successfully in their own lives. I think that was my idea, to bring people in so that we would begin to get an idea of what life was going to be like or what it could be like when we left.
Do you remember who those people were that you brought in?
Kaplan
One of them was Bob Ludlow, who's a disabled attorney in Santa Cruz. I don't remember the others. But Bob is still a friend.
Kaplan
So it wasn't a Judy Heumann or an Ed Roberts coming down?
Kaplan
It may have been John Hessler. Or was it Larry--
Bonney
Biscamp?
Kaplan
Biscamp. Somebody. Who was--Bob somebody, who Larry was friends with? There were a couple of guys who came down because I heard about the Rolling Quads, that they would give talks, and I wanted them to come. I heard about CIL [Center for Independent Living] and PDSP [Physically Disabled Students' Program] and was totally intrigued, and liked the idea and so wanted them to come.
One of the people who came was Zona [Roberts]. So that was one. My father found Zona. When I reconsidered my law school applications, I had applied to Davis, Santa Clara and I forget what the third law school was.
Bonney
This was after your injury?
Kaplan
No, before my injury. I renewed my applications but applied to Berkeley also because that was the only place that had a Disabled Students' Program, and my father found Zona. I remember coming up to Berkeley with Zona when I was still in the hospital and going up to Boalt to visit and visiting the admissions office and being quite aware that Zona was, like, edging my wheelchair up closer and closer to the desk of this guy who we were meeting with because he was, you know, very uncomfortable about the whole thing, and she wanted to put pressure on him to let me in [laughing]. She knew exactly what she was doing [laughing]. It was pretty funny.
Bonney
Do you remember that man, his name?
Kaplan
No, no. No, I don't. It might have been a woman. I don't recall. But they did let me in. And Berkeley was, like, very hard to get into at that time. Still is.
Bonney
Tell me more about what Zona did. What did she say to you when you first met and she came down to see you?
Kaplan
Oh, I don't know. Zona was always, you know, so sort of casual about things. I remember she came to visit, and I was having lunch, and we had tacos and she ate one of my tacos. Sat on my
Bonney
Let's go back just a little bit. I've talked with your father, and he tells of a story when you first broke your neck and you and he were meeting with the doctors, and the prognosis was not all that great, early on. I guess it was about a month after you had broken your neck. And you cried in that meeting. Your father said the next day he came back to see you and that you were very cheerful and happy. He asked you what happened, what changed your mind? Do you remember that? Do you remember what--
Kaplan
No.
Bonney
No? You don't?
Kaplan
No. What did he say I said?
Bonney
Well, he said that when he asked you, you responded, "You can do a lot from a wheelchair." So you must have had some realization.
Kaplan
Well, I had always been attracted to people with disabilities. I remember at Santa Cruz there was a guy who, I think, broke his leg on a motorcycle or something and it was one of these very, very complicated breaks and was never really going to heal back up the way that it might, and walked with a cane. I found that very fascinating and interesting and found people with disabilities very interesting, always.
My roommate in college, when she moved away from Santa Cruz she came up to San Francisco and was working as a live-in attendant for a woman who was working at San Francisco State, a woman who had had polio. This was maybe a month or two before I broke my neck, that I came and visited her and met this woman. I never had the sort of feelings of fear and revulsion and other fears that non-disabled people have. I just found disabled people very fascinating. I don't know why.
And so I didn't really go through a heavy period of denial or trying to, you know, wait for the miracle cure. I just didn't. I don't know why [chuckling]. I imagine that's why it was easier to think about it and come around and just deal with it. I had roommates who were heavy into denial and who didn't want to do
Bonney
So your own perspective wasn't one that your life was over and everything was finished and you had no future.
Kaplan
No. The reality was I wanted to go to law school because I wanted to be an activist and in some way or another do public interest work. I'd been thinking maybe women's rights, maybe children's rights, or something like that. So the whole experience just pointed me in an obvious direction. I was anxious to get on with it.
At that point, there were just tons of barriers. It was a very frustrating experience to go out. I remember going out of the hospital one weekend and trying to get around a shopping center before there were curb cuts, before there was accessibility. People just didn't look at you at all. There were hardly any people with disabilities out in the community. All that just made me want to change it. To know there was a group in Berkeley that was working on that stuff was, like great. That was where I wanted to be.
Bonney
Did you see disability as a civil rights issue? What did you think about it?
Kaplan
I may not have seen it in that context immediately, but I'm sure it made sense to me as soon as I heard about it. Yes, it was something to go kick ass about [chuckling], to go try to change things. It was very clear to me from the beginning that I wanted to be with other disabled people who wanted to change things.
Move to UC Berkeley; Life as a Cal Student, 1973-1976
BonneySo Berkeley was a natural.
Kaplan
It was just the only place to go, yes.
Bonney
So when you got to Berkeley, tell me about your living arrangements.
Kaplan
The first summer, I went to Berkeley and decided I should take a couple of summer classes, just to get my feet wet and get used to living on my own, and get my systems in place. I lived at student
When law school started, I moved into Manville, the law student residence that other students lived in. In the second semester, my roommate was Susie Sygall, who is head of Mobility International U.S.A. now. Susie started BORP [Berkeley Outreach Recreation Program] at the time that we were together. I may have provided her with some legal help, setting up a nonprofit or something.
Bonney
Was Manville accessible?
Kaplan
Well, sort of. I walked with a cane then so didn't have wheelchair access issues. The law school was fairly accessible. They had elevators that I used to get up and down the stairs. I walked with my cane and had a backpack with my books. Oh!
The worst part of my first year was getting constant bladder infections and having to go to the bathroom all the time. It took many years to stabilize all of that.
Bonney
How did you deal with that when you were at UC? Did Cowell Hospital help?
Kaplan
Probably. I guess I went there to get antibiotics and stuff. But it was just something that I personally had to manage.
##
Kaplan--being very embarrassed at having to leave a class in the middle of class to go to the bathroom and come back. People there were--students were pretty accepting. Faculty wasn't terribly supportive. The administration of the law school wasn't terribly supportive. But I managed.
Bonney
Tell me about the administration. What did they do or what didn't they do?
Well, they gave me a little parking space. They gave me a parking space for my car and a place to park my golf cart. I remember it wasn't for me, but I remember being part of a group of disabled students that were pushing for the law school administration to allow students with disabilities to go through in four years as opposed to three years, and their attitude was, you know, we're a three-year law school and we're not going to lower our standards because that would make us like, you know, those lower-quality night schools. That was their attitude. It was very snobbish. They really were not very interested in accommodating people very much.
It probably would have been good for me, especially in that first year, if I hadn't had to take a full load, but I didn't even know that that would have been an option, and nobody certainly suggested that that was an option. It would have been much better. But I managed.
Bonney
Were there other disabled students in law school at the time?
Kaplan
Yes. John Bancroft, who was blind, was in my class and also a woman--I don't remember her name--who rode a wheelchair, who wanted to have nothing to do with other people with disabilities. A very pretty blonde woman in a chair. I spent a lot of time at the Disabled Students' Program and then got hooked up with CIL, I think in my second year, first or second year.
Bonney
Let's go back. When you got to law school, did DR [California State Department of Rehabilitation] help put you through school?
Kaplan
Yes, DR paid for law school. They paid for my tuition and books and got me an electric typewriter and the golf cart. All that was DR. Yes, so pretty much anything I needed was provided. They were very good about that.
Bonney
How did you get hooked up with them?
Kaplan
I got hooked up with DR when I was at Santa Clara Valley Medical Center. Flo [Florence] Kurnutt was my rehab counselor.
Bonney
And she was hooked up with the hospital?
Kaplan
Yes.
Bonney
But she knew about Berkeley? Did she support you going to Berkeley?
Kaplan
Yes. I think they might have--I don't know if Rehab helped me with my application in any way, but they just transferred
Bonney
How did you get along with her?
Kaplan
Oh, okay. We just--I'd smile at Ruth and go along with whatever she wanted. It didn't matter. Then Karen Topp became my counselor, and Karen was great. She let me have whatever I wanted [laughing]. Didn't question anything.
Bonney
Was it typical of DR to pay for people to go through law school?
Kaplan
Then, yes. I don't think it was a question. I never had the impression that that was something they wouldn't do. It was back in the early seventies. It was a real different time.
Bonney
What kind of services did PDSP give you?
Kaplan
It was mostly a place where I went to hang out and be with people and get support. I don't really recall. They might have helped arrange for the parking with the law school, and other things like that. I don't really remember. But there wasn't a lot that I needed. I did all my signing up for my classes on my own and dealt with the law school fairly autonomously. That was how it seemed to me.
Bonney
What was PDSP like? When you walked in the door, what was it like?
Kaplan
There was this big open room. It was in an old house, behind the Top Dog on Durant Avenue. There was this big long ramp. I probably got--no, I didn't get wheelchair repair services, but they might have helped me service my golf cart because I remember interacting with the guys in wheelchair repair. In fact, they changed my batteries from time to time, and stuff like that.
There was just this big open room, and there were offices sort of around in some of the bedrooms, because this was the floor of an apartment. I would hang out with Carol, the receptionist. I don't even remember her last name. Hang out with Zona and John and talk about what was going on. I remember it primarily as a place to hang out.
Bonney
A social place.
Kaplan
Yes. People were not hugely busy. I don't think they had a huge amount of paperwork. I know they were writing grants for
Bonney
What was John Hessler like as an administrator?
Kaplan
I don't know what he was like as an administrator. John was very formal and reserved in a way. He was interested in how people were doing and I think really liked serving as a role model. He was living independently, he discovered cooking with a hot plate and loved that, and I think really liked mentoring other people with disabilities.
Bonney
So people at PDSP didn't seem real busy.
Kaplan
They didn't seem real busy to me.
Bonney
What were they doing?
Kaplan
They'd have appointments with people to help schedule services and stuff. There was attendant referral going on, wheelchair repair. It was more sort of classic independent living services back then because the people who needed services, I think, had more significant disabilities. I'm sure helping people handle different crises that would come up around attendants or equipment or this and that.
But there was always just people hanging out and talking about Berkeley politics and talking about starting the Center for Independent Living and stuff like that.
Bonney
Tell me about the discussions that people had when they were sitting around. What did people want? You talk about developing CIL. What was it that people wanted? When you sat around and talked, what was expressed as needs or issues?
Kaplan
I think there was a lot of talk about how people were treated by other non-disabled people. It was a place to go and sort of, you know, debrief and complain about how stupid people were, how they treated you, to gossip about relationships, to find out what other people were doing to manage their disabilities, get practical information from people. But it always felt more sort of personal and not very formal.
People wanted to have social lives and to do well in school and, I mean, to be like everybody else. We would complain about accessibility problems and figure out what we were going to do to take on different parts of the establishment. That's what I remember. It was not terribly complicated, in our minds.
When you went to law school, what was your major concentration? What was your area that you ultimately went into?
Kaplan
I took courses that I thought would be useful to me for doing a disability rights practice. There were no classes on disability rights law, and so I took housing law, welfare law, employment law, family law, and worked in disability-related research topics when there was research papers. And then I took just some of the standard courses that you needed to take in order for you to be able to pass the bar.
Bonney
When did you pass the bar?
Kaplan
In 1976, the summer of 1976.
Bonney
First attempt?
Kaplan
Oh, yes, yes. Thank God!
Bonney
What did you do when you were at UC? Were you in groups, organizations, associations? Did you have support groups?
Kaplan
We started a disabled women's support group that would meet in the student union.
Bonney
Who was "we"?
Kaplan
I don't even remember. Susie [Susan] Sygall, me, Judy might have been a part of it because Judy Heumann was a graduate student for part of that time, Mary Ann Hiserman. I don't even remember who else. Mary Jane Owen was in the area at that time, but she was at San Francisco State. I don't remember who else. There was a quadriplegic woman named Cathy.
Bonney
Caulfield?
Kaplan
Yes. Judy Taylor. We started a disabled women's support group, and that was how I met Corbett [O'Toole], when she walked with a cane and had a boyfriend [laughing], way back.
Bonney
Corbett had a boyfriend?
Kaplan
Yes. I'm trying to remember. I met Ann Finger later, when I was back here, when I was at DREDF [Disability Rights Education and Defense Fund]. I don't remember who else, but that was a group that met on a regular basis and we had different topics that we discussed during our meetings. I was actively involved in a sexuality training program for health professionals at UCSF [University of California, San Francisco] that several other
Then, about halfway through law school, Ed Roberts encouraged me to join the board of CIL, which I did.
Bonney
Okay. Let's go back to the disabled women's support group. What were the issues of the day?
Kaplan
Oh, I don't remember. I really don't remember.
Bonney
Do you remember what the emphasis was for forming the group?
Kaplan
Emulate what the women's movement was doing at the time and to create a place where disabled women could get together and talk about mutual concerns and issues. I don't remember. I remember the meetings, but I think we were just sort of beginning to talk about what were the differences between disabled women and disabled men, what were our opportunities, and were we getting steered into traditional women's roles or not even that? I'm sure sexuality was an issue and concern. I don't think people were too concerned about families and having children at that point. We were all pretty young and, I think, interested in moving ahead professionally.
Bonney
Did you ever think of aligning yourself more formally with the women's movement in any way?
Kaplan
No. I don't think so. We wanted to do what they were doing, but it was more a support group than a political group, and we just felt a need to get together and find out how each other were experiencing things and have a place to go to talk about stuff.
Bonney
What were the differences between men with disabilities and women with disabilities?
Kaplan
Well, at that time, men with disabilities had a lot more leadership opportunities in the movement. I think women with disabilities were feeling a lot of patronization. No matter where you went, either because you were a woman or because you were disabled. Getting steered into traditional women's professions, wanting to be more involved in the movement but getting steered into more traditional women's roles there, and I think we were feeling a lot of frustration and wanting to get beyond that. It's kind of ironic because, I think, when you look at the disability movement now, there's, I think, very strong female leadership, especially here but on the East Coast as well.
What made the change, do you know?
Kaplan
No. Well, we're better [laughing]. I don't know. I think it may be the support networks, and it may in part be that disabled women are--I don't know. I think we survive better. I think a lot of disabled men have not made it and have a harder time because I think men feel they have to make it on their own and live up to non-disabled standards in a lot of respects. I think that disabled women have really sort of gotten beyond that.
Bonney
Now, what was this sexual--
Kaplan
Sexual attitude readjustment. The SARs. They were put on once a month or so. Jane Fonda and Tom Hayden went to one, and they were very popular. It was a weekend course that addressed issues around female sexuality, gay sexuality, disability sexuality, regular sexuality, and the primary goal was to help health and helping professionals be more comfortable dealing with issues around sexuality with their clients.
There were small group sessions where people talked about how they were experiencing the regular curriculum. The curriculum included, I think, an hour-long collage of pornographic films to desensitize people. Then a lot of it was panel discussions about different aspects of human sexuality. There was disability panel, there was a gay panel, an older people panel--to help people get information and feel comfortable and have a place where people could ask questions.
Bonney
Why was this an important topic for people with disabilities?
Kaplan
Well, because we were acutely aware that we were regarded as asexual or non-sexual. As young people [chuckling], that was not a very comfortable role that we wanted--we were interested in being sexual and being regarded as being sexual. That, I think, was a core issue for many people around their identity and how they're perceived by the outside world. If you're regarded as asexual, that's incredibly disempowering and just very belittling. So I think we really wanted to have a place where we could explore our own sexuality and try to change people's attitudes.
Bonney
What were the issues? What came up in those meetings that you talked about specifically, that you can remember?
Kaplan
Um, well, the people who came to the sessions were just blown away to find out that people with disabilities were interested in sex, were capable of having sex [even] if they had severe mobility impairments, and, I mean, these were not groups where we talked about our own issues so much as we laid information out to people
There were issues around reproductive capability, around--I think a big part of it is just how people are perceived.
Bonney
What kind of health professionals were these?
Kaplan
All kinds. Doctors, nurses, psychiatric counselors, social workers, all sorts. This was something that they would come from around the area and take a weekend course. They probably got credit for it, professional credit or something.
Bonney
How long did this go on?
Kaplan
A couple of years.
Bonney
Quite a while.
Kaplan
Yes. I was involved in it for a couple of years, and we would make a little bit of money.
Bonney
Oh, they would pay you?
Kaplan
Yes. Oh, yes.
Bonney
Were you adjunct faculty?
Kaplan
Yes. We led small groups and participated in a panel and were there for the whole weekend. While I was doing it, there was a standard group of us who were on the faculty. We would have meetings and talk about how the course was going, how we would restructure it in the future, so it was done as a team of instructors.
Bonney
Who taught, besides you? Do you remember?
Kaplan
I told the names of the other disabled people who were involved. Scott Luebking, Sue Knight. Also Sue Shapiro was involved in it. Sid Fry, I think, was involved in it. Neil Jacobson. These were all the different people who were on the panels at different times. A woman who I currently know as a member of my church, named Joannie Blank was involved. She wound up creating a business where she sold sex toys called Good Vibrations.
Bonney
[chuckling]
On San Pablo. She just sold it. A guy named John Holland was one of the conveners. He was a minister.
Bonney
There was also a group of Stanford medical students who would come to campus--
Kaplan
Yes.
Bonney
--every so often. Can you tell me about that?
Kaplan
This was something my dad organized that started when he was at--when I was at Santa Clara Valley Medical Center, towards the end, he brought over a small group of medical students to see what a rehab hospital was like, because he was at Stanford Medical School at the time, head of social work there, and once he was exposed to rehab and independent living, he was amazed that most of the students there were never exposed to these issues at all, as part of their standard medical training. And so I remember a group that came to Santa Clara Valley Medical Center when I was a patient there.
Then he developed a regular course that I think was once a semester or so for one day, where they would spend a half a day at Santa Clara Valley Medical Center and half a day at the Disabled Students' Program and CIL, getting an idea about what was available, what people's issues and concerns were around medical services and treatment, what kind of services were provided to people with disabilities, and how people were living.
Bonney
You also had dinner together, didn't you?
Kaplan
I think it was dinner at the end of the day, and so it was a time for people to socialize and talk less formally. I think for many of the students it was, you know, a very powerful experience because it was the first time they had spent a lot of time with people with disabilities and were able to ask questions and hear what people had to say. A lot of things they heard were the first time they ever heard about sexuality or heard about complaints people had around discrimination and how strong negative feelings about medical care and practice.
Bonney
Eye opener.
Kaplan
Yes.
Work With the Center for Independent Living and Service on the Board
BonneyYou also mentioned that while you were still at Cal that Ed Roberts asked you to be on the board of directors of CIL?
Kaplan
Yes.
Bonney
Did you work with Ed a lot? Did you see him?
Kaplan
Yes. We became pretty good friends. I used to hang out a lot at the green house. Visit Ed. It was a wonderful place to go because there were great people living there. Eric Dibner lived there, Walter Gorman lived there. There were these regular, big family-style meals. Zona's other sons would come hang out. Randy [Roberts] was rebuilding a Porche out on the front lawn, sort of on a permanent basis.
Bonney
[chuckling]
Kaplan
It was just a wonderful place to go visit Ed. Ed was an amazing person to me at that point, and a real role model, and it was a wonderful place, where disability was a major part of the environment. There were other disabled people who would come hang out, but there were lots of non-disabled people, too. It was our own little sort of circle of friends. I'm not sure, and it may have been the Zona connection that really got that going. I'm not sure.
When I first came to Berkeley, Ed was gone. He was down at --he was teaching in southern California for a year, and so I didn't meet him right away. But I think it was that connection and then Ed encouraged me to get more involved in CIL and suggested that I join the board, which I did.
Bonney
So you knew Ed pre-CIL, then.
Kaplan
Well, I think I got to know Ed right when he was getting involved at CIL, around the same time. I think he got involved in CIL shortly after he came back from teaching down south.
Bonney
Why was he a role model for you?
Kaplan
Well, because he was such a strong leader. And just expected people to be in leadership positions, and would really encourage people to take risks, to do what they wanted to do, and to expect more of themselves. I was surprised when he said, "Why don't you join the board?" [chuckling] "What?! I'm just a little law
Bonney
What did you do? Did you join the board?
Kaplan
Yes. I went to the board I think in my second year. I don't recall even for how long I was on the board. It must have been for over a year, and I became chairperson of the board. I don't remember when. It was not a real strong board. Ed doesn't like strong--Ed didn't like strong boards. I honestly can't really remember what the business was that we did at our meetings. I don't think it was as rigorous a review of what was going on within the agency as it should have been. All the fiscal stuff that eventually came up was, you know, a huge surprise to everybody. I think we were probably more involved in policy issues and advocacy type stuff. I don't think it was a strong business board. But I don't have a strong memory of what those meetings were like, really.
Bonney
Why didn't Ed like strong boards?
Kaplan
Because he wanted to do what he wanted to do. He didn't want other people telling him what to do [chuckling].
Bonney
This financial crisis that came up. Was that--
Kaplan
The first one that came up that I remember was there were cashflow problems, and the bookkeeper, who was--I can't recall his--
##
KaplanThe bookkeeper ran into a cashflow problem and wasn't able to make payroll, and so he dipped into the federal tax withholding money that the IRS [Internal Revenue Service] requires you to keep in reserve so that you can make your quarterly withholding payments. I mean, we were facing having the IRS come and lock the doors of the organization in order to get their money. It didn't happen, but it got real close.
Bonney
How was it averted?
Kaplan
I don't know. The money came from somewhere at the last minute. I don't know. I just know that it was averted.
Bonney
Were you on the board at the time?
Kaplan
I think so. I think so.
And this was a board issue at some point?
Kaplan
At some point, but, I mean, it was a very grass-roots board that didn't really understand what the board responsibilities were and, I think, was either in the dark or when the fiscal stuff was being discussed during the board meeting, most of us weren't paying attention. We didn't really--none of us had much experience, and so--maybe there were some people who did, and they probably were chain-smokers also, but--the people were interested in advocacy and in the issues and were not interested in running an organization like a business.
On top of that, there's always been this very anti-professional bias at independent living centers, and CIL certainly had it. You know, you didn't want to behave like the professionals did because you hated the professionals.
Bonney
So there were essentially few people minding the store. Is that what you're saying?
Kaplan
Yes. I worked with Ed here [World Institute on Disability] for many, many years, and that wasn't his forte. Ed believed that you could do whatever you wanted to do.
Bonney
Regardless.
Kaplan
Regardless. The rules were meant to be bent. He believed he could get away with anything. He knew how to charm the pants off of anybody. The thing that I look back on that really made me, I think, the most angry was I was chairperson of the board, and it really was the board's prerogative to choose the new director when Ed went off to Rehab. Ed basically decided that it was going to be Phil Draper and informed us that he had already made the decision. He came to a board meeting and said, "I've already made the decision." And the board went along with it. The board didn't have a showdown with him about it.
I'm thinking, "My God," I knew something really wrong was going on, but I didn't know how to handle that situation or what to do about it. I wanted Ed to be my friend, so we didn't say, "Wait a minute. It's not how it's going to go."
Bonney
Was there an issue with Phil Draper as the person?
Kaplan
No, it was just the process. It wasn't Ed's prerogative to pick the new executive director. It should have been the board's.
Bonney
How were people selected for positions at CIL?
Oh, I think a lot of it was done on a friendship basis. Everything was pretty informal back then, and everybody was friends with everybody else. New people would show up and if people liked them, they'd get offered jobs. I don't think there was that much of a formal job announcement and interview process. Things were just done.
Bonney
Now, somewhere along the line, you developed personnel policies.
Kaplan
Yes, I don't remember that. I could have. Might have. I don't remember it.
Bonney
There was something in one of the Independent, the newsletter that they put out, that said that you had developed personnel policies and that the law school had input and helped developed them with you.
Kaplan
Oh, it was--one of my professors, my corporations professor--was fairly familiar with nonprofits, and he might have helped. I don't remember.
Bonney
Okay. Who made policy decisions at CIL versus administrative decisions?
Kaplan
I think Ed did that. He might have gone to the board to get ratification from time to time, but as I recall it was primarily Ed doing what he wanted. And most of the time we were in perfect agreement. It wasn't a lot of disharmony.
Bonney
Let's go back in time just a little bit. When CIL was formed, how did Larry Biscamp become the first director?
Kaplan
I don't know. I wasn't part of that.
Bonney
How did Ed become the director?
Kaplan
I don't know. That was before my time. That was before I was on the board.
Bonney
Okay. Can you remember what some of the issues were at CIL when you were on the board? Funding was one of them. Were there other kinds of issues?
Kaplan
Probably what program we would develop, what services were needed, advocacy issues, legislation.
Bonney
Was it a time when you were trying to decide which of all these different kinds of services to provide? Or was it a given that
Kaplan
I think it was a given that we would try to do everything that we could, and I think the issue was how we would expand. I have a feeling a lot of it was jockeying between different disability groups, different disability interests. I think--the board meetings, I think--were mostly getting reports. I don't remember a huge amount of decision-making. But it was a very long time ago, and it was very, very new to me. I had never been on a board before in my life, and so a lot of it I frankly don't remember. I don't think I had that much of a context in which to place a lot of what was going on.
Bonney
Were you appointed chair of the board right away, or did you serve on the board for a while first?
Kaplan
I think I served on the board for a while. I don't think I became chair right away.
Bonney
How did you get to be chair?
Kaplan
A vote of the other board members, but I don't remember.
Bonney
Not an appointed position by Ed.
Kaplan
I don't think so.
Bonney
What was the role of the board?
Kaplan
Well, the board, I think, would mostly ratify stuff. But I can't say I have a detailed memory of those board meetings.
Bonney
Do you remember if the board talked about coalition building and the whole issue of bringing in other types of people with disabilities? CIL is said to have been really heavy on quads.
Kaplan
Yes.
Bonney
Eventually we know that other disability groups were included. Were you part of those discussions?
Kaplan
I think I was part of those discussions when blind services were brought in, and I remember when we set up transportation services going down and actually visiting the company we bought the bus from. But I think it was way before we had deaf services, we were addressing the needs of other disabilities. It was definitely starting off very heavily to serve people who were quads.
Did the staff and board want to serve other types of disabilities?
Kaplan
I think that was probably an item of contention, with different sides. I doubt that it was something that came easily because I think people were threatened they might lose some of what they already had or they had a heavy personal investment in or would lose some power.
Bonney
Do you know who was pushing for--
Kaplan
No. I remember working with Jan McEwen [Brown] and others.
Bonney
On what?
Kaplan
On either designing the services or trying to figure out what we were going to provide. I think CIL started with a heavy student base and didn't really know how to get very deep into the community. Certainly, CIL wasn't serving older people then. It wasn't really serving the full range of people with disabilities in the community and was very heavily--thought of itself--as serving young people with disabilities who really wanted to be independent.
Bonney
In the Independent, again, that newsletter, there's one issue that talks about the problem of racism within CIL. There was a group called the FBI--Fine, Black, and Intelligent--was the name of the group. Did you have any dealings with that group?
Kaplan
No.
Bonney
Did you know what those issues were?
Kaplan
I mean, I expect that they were issues around upward mobility and who got what assignments. I vaguely remember tension around that stuff. I don't think that, you know, CIL was started very much based on the PDSP model, and that was what people were familiar with. A lot of issues of expanding and getting more into the community and dealing with diverse populations was just really new stuff to people, and threatening to people who set things up with a certain experience and point of view, and it was difficult for people, I think, sometimes to change and expand without being threatened. I remember some of that tension, not a lot.
Bonney
In general, did the board know what the internal issues were?
Kaplan
Not that much. I don't think so, no. Not unless people were already familiar with the organization. Some people were, and some people weren't.
[tape interruption]
Bonney
Debby, in your opinion, what was the importance then and now of the Disabled Students' Program?
Kaplan
Well, I think when the Disabled Students' Program started (I became acquainted with it shortly after it started), it was supporting a pretty discrete, identifiable group of students with visible disabilities, whose needs were defined into certain categories, and that was DSP did: mobility, attendant referral, housing assistance, and discrete things. I don't recall DSP working that strongly as an advocate for students with respect to the administration of the school. Maybe it did. I'm sure it was involved in eliminating architectural barriers and stuff like that, but it wasn't something that I saw.
I was fairly autonomous as a student at the law school, in a very closed, little environment, and I was doing okay, so I wasn't exposed to some of the things that DSP did. I think what they did for undergraduates was different than for graduate students, who were more autonomous. But it was a discrete population: people with significant physical disabilities, some blind people. I don't recall any deaf people.
I think now the Disabled Students' Program has really expanded and serves people with a much wider variety of disabilities, and I think a lot of the issues for some students now are more academic, where there's more academic advocacy and support that's needed. I think a lot of what was needed initially had more to do with independent living, getting people situated, and providing support so people could just be there. But it was a fairly bright group of people, I think, who academically could fend for themselves a little better. So I think it has changed.
I think also students--I mean, back then it was a very social place for people--a place where people got just the support of being with other people with disabilities, that wasn't available in a lot of other places. And there weren't very many students with disabilities. I think that's really changed a lot. Now students may need one or two services, but are better integrated into the student population as a whole. You know, society has changed a lot with respect to people with disabilities. So I think it's a different environment, and more standard now as well, in some ways. There are many other disabled students' programs, and what disabled students' programs do is more well thought through and organized now, I think.
Bonney
As a student, still, at CIL, there was something called the Disabled People's Legal Resource Center.
Yes.
Bonney
Were you part of that?
Kaplan
Yes. That was my idea.
Bonney
Tell me about that.
Kaplan
Oh, God, it was really not very well thought through. My idea was that paralegals could do a lot of pre-legal work for people who had employment or discrimination concerns and wanted to file discrimination cases. Or we were doing SSI [Supplemental Security Income] stuff, too, for people. And so we had a group of people who we sort of trained as paralegals. Not that we [chuckling]--there I was, a law student--I didn't have a lot of experience myself. But helped people get complaints filed and sort of helping them through the bureaucracy of dealing with things.
What we didn't really have was much in the way of supervising attorneys, and no real guarantee that the people we brought in as volunteers, who were mostly other people with disabilities, knew what they were doing and were steering people in the right direction. But the basic idea was we would bring on people with disabilities, they would be volunteer paralegals and would help people with disabilities file different kinds of complaints and get them through the process, where administrative complaints were involved, where you didn't have to have a lawyer representing you.
I now shudder at the lack of real legal oversight of what people were doing, and quality control. I'm sort of mind-blown that I ever was [chuckling] involved in it.
Bonney
Were your clients served?
Kaplan
To some extent. You know, some people could do their work and other people, I think, had the intention of doing it and didn't really know that they were doing. And so I have a feeling that some complaints languished and things didn't happen with them, and I have no idea about what the quality was of the representation that people were getting.
Bonney
How long did this organization last?
Kaplan
Well, that really formed the basis of the Disability Law Resource Center that Bob Funk took over and eventually turned into DREDF. I remember applying for a grant from United Cerebral Palsy Association, when John King ran it, who was this really lovely man in San Francisco, and they gave us a small grant, and we used that
Bonney
Jim Donald?
Kaplan
No, something else. But it was a part of CIL. And then I lost touch with it after I left.
Bonney
How many people were volunteering in the DPLRC? Was it a big group?
Kaplan
No, I think it was like five or six or something like that. It wasn't a big thing.
Bonney
And about how many people did you serve at any one time?
Kaplan
I have no idea. I can't remember. Maybe a few dozen or something.
Bonney
Okay. What was the 1975 Disability Civil Rights Conference?
Kaplan
There was a conference at the Claremont that was put on by the National Center for Law and the Handicapped, which had a federal grant and was in South Bend, Indiana, at the law school there. They decided to have--I think it was the first of the time--a conference that would bring together people who were working on disability rights law around the country. They decided to have it at the Claremont, and a whole bunch of people came from Washington and other places who ended up some of them being very seminal people in the disability rights movement. That was pre-504 [Section 504 of the Rehabilitation Act of 1973]. It was pre-anything.
Bonney
What was your role in it?
Kaplan
I remember I attended [chuckling]. I may have done a presentation about the Disability Law Resource Center or whatever we called it at that point. I don't recall otherwise.
Bonney
What was the effect of this conference? Did it move to a next step?
Kaplan
I think it brought many people together who had not worked together before and set the stage for Section 504, because it brought people together and that was clearly what people wanted, was civil rights legislation. I think 504 happened around that time.
Was John Wodatch--was that the level of person that came from Washington?
Kaplan
John Wodatch. I remember John Wodatch and other people came. It might have been after 504 was already enacted. I don't remember.
Bonney
You mean after '77?
Kaplan
No, 504 was in the Rehab Act of--
Bonney
'73.
Kaplan
Yes.
Bonney
Oh, you mean between there and '77.
Kaplan
Yes.
Bonney
Okay.
Kaplan
So it might have been 504 was on the books but nothing was being done with it, and that led to the--I think Wodatch presented a draft of the regulations at that conference, I think.
Bonney
Is it John Wodatch that is responsible for that language being in?
Kaplan
Oh, yes. The regs. John was one of the principal authors. There was also a woman named Ann something-or-other who was involved. I don't know to what extent Lisa Walker was involved. There was a very small core group in Washington that was working on this stuff. But that was before I was there.
Bonney
Okay. Why was CIL powerful?
Kaplan
I think because people came and their lives were transformed. People came and were either living in nursing homes or in their parents' homes, and learned from other people with disabilities how to live independently, how to create support networks, how to advocate for more services from the city governments, and were very effective in setting up basic framework so that people could live on their own and support each other. And that was very, very empowering for people. I'm sure most everyone who came there, before they came there just didn't believe those things were possible.
CIL was inventing new things all the time, trying out new models, and figuring out how to make this stuff happen from scratch, and was very strongly-based in peer support model and in the idea that people with disabilities could do it all themselves.
Bonney
What is its legacy in the world?
Kaplan
All the other independent living centers around the world! I think its legacy is lots of people with disabilities who have gone on to have careers and to influence public policy and all the services that are peer-based, not just in this country but around the world. The whole idea that people with disabilities can solve their own problems and are the most appropriate service providers for each other, which is a basic tenet of independent living movement around the world. So it's pretty fundamental.
It isn't like it was just invented in Berkeley. I think it may have happened in Berkeley first, but the ideas of the independent living movement, I think, are there, inside people with disabilities, and they just resonate once they're put into action. People go, "Oh, yeah! I know that. I believe in that."
Courtesy of Regional Oral History Office, University of California, Berkeley,
http://content.cdlib.org/view?docId=kt600004mg&brand=oac4
Title: Deborah Kaplan
By: Sharon Bonney,
Date: 1998
Contributing Institution: Regional Oral History Office, University of California, Berkeley,
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