― 55 ―
I. Early Years; A Burgeoning Activist Identity; The Creation of Disabled in Action [DIA]
Family background, neighborhood as child, parents' employment
― [Interview 1: July 9, 2001] [Tape 1, Side A] ― Jacobson
Why don't you start off by you telling where and when you were born and giving me a little bit of your background?
I was born February 18, 1948. I was born in Brooklyn, and I lived most of my life in Greenpoint, Brooklyn. I have two sisters, both younger than me. My parents are James McQuade and Mary Bynon McQuade. Dad was born in Greenpoint. My mother was born in Sayville, Long Island, but moved to Greenpoint when she was very young.
What type of neighborhood?
The ethnic composition, it was largely Irish-Catholic and Polish-Catholic. We had a synagogue, so there was a Jewish population. There were some Italians, but the big ethnic group was Irish and then Polish. Now it's very much Polish. There's a new wave of immigrants that came in and they're basically, I would say, revitalizing the neighborhood. Our claim to fame in Greenpoint was the [USS] Monitor was built there in the Civil War. It was settled by the Dutch, so it was probably a neighborhood that's been there for three hundred years or more.
What kind of work did your parents do?
Before I was born my dad worked for Western Electric. He was an internal investigator. They would come in and check books and all different things for Western Electric. My mother worked first as what they called a soda jerk.
― 56 ―
My mother comes from a family of seven. Her parents were immigrants from Ireland. My father, it's a family of two, he and his older sister, and his parents were born here. His grandparents were from Ireland. During the Depression, my mother's family was very badly affected. My father's family--my grandfather worked for Con Edison, I believe, and my grandmother was a teacher in the parochial school, so they weren't directly impacted by the Depression. My mother's family was, so my mother, being the oldest, had to leave high school when she was in her last year, I believe. She worked as a soda jerk to help supplement the family's income. They eventually had to go on public assistance, welfare, whatever they called it at that time. Then when she went to work after that job, she worked for Eberhard Faber; they made pencils. I don't know if she did clerical work or if she actually made pencils.
They married in February of '43, during the war, and my dad and other people were about to be drafted, but my dad had, from childhood, I guess from fourteen or so, very severe asthma. When he was checked out, they felt he couldn't be accepted into the army, so he was 4F during the war. He worked in Western Electric, continued working there, and mom worked at Eberhard Faber. When they married, there was a shortage of housing, so they moved in with his mother and father, and they lived there, I guess, the first four or five years of their marriage. I was born after the war, and I'm the first child, then my sister, Virginia, and my sister, Maureen. They're about seventeen months apart, so one is '51 and one is '52--their dates of birth.
Contracting polio, surgeries and hospitalizations, readjusting to life at homeMcQuade
I contracted polio when I was three and a half, so that would be 1951, but I got it in the off-season. I got it in November, not in the summer when most people contracted polio. The doctor, our family physician, didn't realize I had polio. I was susceptible to sore throats and running fevers, so at first they just thought it was a bad sore throat. I still remember this part. I remember saying to my father, "My legs hurt," and he was picking me up. We wore--I'm sure you did the same--the pajamas with the feet and legs and everything. I remember I was holding my sister in the bed. I was in my parent's bed. All my cousins--everybody lived next door, of my mother's family. Our grandmother on my father's side was around the corner, but my mother's family--she had three sisters all living next door, and two brother-in-laws, and then another brother was living, I think, in Jackson Heights, at that point, with his wife. My grandparents died six months apart in '48 when I was born. I know of them, but I never met them. I knew my grandparents on my father's side.
So really, when I contracted polio, I was three and a half. I was taken to Kings County Hospital. I was in an oxygen tent, but I never was in an iron lung. I'm assuming that the muscles in my diaphragm were not so weak that I couldn't breathe, but I needed the oxygen. When I was first taken to the hospital, they told my parents I was going to die, so that was quite traumatic for them. Then I obviously didn't die. I went to St. Charles Hospital. It doesn't exist anymore. It was a Catholic hospital for children with orthopedic disabilities. I was sent there--
― 57 ―McQuade
In Brooklyn Heights, Hicks Street in Brooklyn Heights. It's now an apartment, but growing up that was my hospital. There was a clinic next to it, so I went there. We didn't have a great deal of money. My dad--
It was what kind of a clinic?
Just a clinic for kids with orthopedic--a lot of kids had polio, but other people had other kinds of things. I had surgery on my legs there. I had spinal fusion done there. In those days, they were doing a surgery on your legs, something about if they didn't take out tendons your legs would go apart rather than staying together. Who knows? The spinal surgery--it was needed--a lot of people who had polio, the muscles on one side of your spine are stronger than on the other side, and it pulls the spine out of alignment. So, when I was about nine going on ten, the doctor said if I didn't have the surgery I would die before I was twenty-one because my spine would crush my lungs. Again, who knows? But a lot of us had spinal surgery, including Judy [Heumann] and all of that.
I was in the hospital from the time I was--I turned ten, and I was in the hospital until about November of that year. I was sent home in a half-cast. In those days they didn't use the halos. They had a cast from your head--from back here--down to your knees, or both knees. They would open up the back and fuse your spine using bones from a bone bank. I went home for about three months, then I went back to the--go ahead.
From the back--
From the back of your head--it's a body cast--down to the knee, to keep you from moving around. When they did the surgery then, they start from the base of your spine, your sacroiliac, and work their way up. It's excruciatingly painful. Back then they were using bones to support the spine, but bones from a bone bank. The only reason this is significant--when I went back in the following year, I went back in January, I was supposed to have the cast taken off and start rehabilitation. When they x-rayed my spine, part of the fusion didn't work, the bone had disintegrated, so they had to take bone from me. They used some of my bone on one part of my fusion, I think as you got higher up, and then they used another part, so I think my scar looks like an arrow pointing to my rear end. At any rate, I was fused from my neck down. I still have severe scoliosis. I expected a very straight spine, but that's not what happened.
Denise, what's a bone bank?
All I know is they had bones. [laughter] From where? We assume from human beings. But they would use them to support the spine. I haven't a clue. You know, you're too young to really understand exactly how this worked.
I would say, for my childhood, I was in and out of the hospital quite a bit. I went in--like, when I went to Saint Charles, I was paralyzed from my neck down, so I had to stay until I was rehabilitated. Eventually I was able to move my hands and move my arms. They did physical therapy, and then they fitted you for a brace and everything. When I first came home, I was about five, and I had a full body brace because my back isn't strong enough to support walking on just leg braces. I was brought home. Then I went back in when I around six for the surgery. They did one leg, then they did the other. Then I went in for rehabilitation again. I had a dizzy spell. I fell out of the bed, and I
― 58 ―broke my leg. So that delayed--I broke my femur. That delayed me getting rehabilitated for about six weeks, so I was about seven by the time I got out of the cast.
I made my Holy Communion in the hospital with this little boy. I was in a wheelchair, with a leg board, because I couldn't bend my knee, and had to go through rehabilitation again, and he was on a stretcher. I spent a lot of my childhood away. There would be periods when I was home, and then I would go into the hospital, and then I would come back. In terms of the impact on family, it was getting used to having siblings again, because my sisters were--Ginny was an infant when I first went into the hospital. When I came home--she was just three and a half years younger than me--she was around two. Maureen was an infant. They were used to me being in and out of the hospital, so it would be learning to share. Because though you're in the hospital, the focus of your parents is on you. There's no sibling rivalry or anything. It would be like getting used to being part of a group of siblings every time I came home. That would be some of the things I remember.
I remember one year--these are like highlights that you remember--I came home from the hospital around the holidays. This was like after one of those surgeries and I was going to go back in, or else I was home for good, I forget which. People used to come to hospitals around holiday times, and they would give you dolls and different things, and I had a cache of five dolls. When I came home, my sisters were more excited about the dolls than to see me. I was less excited to see them than to be told that I had to share the dolls. That's one of the things I remember. My mother said, "You have to share. You have five. You just have to share with your sisters." It would be relearning things like that.
Experiences with doctorsJacobson
Do you remember anything about the doctors?
Sure, we all have our war stories. I guess the stuff that I remember--in some ways, there was a lot of comraderie, because you--in the hospital I was in when you were under six you were in the little children's ward, then you went to the big girls' ward. Where I broke my leg I was still in a crib, but it was a big crib because I wasn't that big. There were other girls my age, and then there were big girls. Funny moments were, Lassie came to visit, and they wanted to do PR--
Lassie's manager and entourage [laughter]. We were all excited. The teenagers were thinking it was Fabian. That was a big thing. Then we found out it was Lassie. I remember they were talking to me, and I think they wanted to use me for the picture with the dog. I was all excited to see Lassie. But Lassie jumped up and put his front paws on the bed and barked, and I got hysterical, so I was not chosen for Lassie to push my little wheelchair [laughter]. That was kind of a funny thing.
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With doctors and all--I think I hated being in the hospital. You made friends, and there would be funny things. What we used to do, you had night tables, and one of the girls that was in--there were three of us in a row that were of an age, and one had a radio, so we used to crawl across, or slide across the night tables and sit in her bed and listen to the radio because we had to go to bed earlier than the bigger girls. There would be stuff like that. My early schooling, first grade, second grade, was really in the hospital. We had nursing sisters and some lay nurses. So some of the stuff I remember. We had this one sister who we used to swear must have been at a women's prison, Sister Aman. She scared the hell out of all of us.
What was her name?
I remember Aman, but maybe it was a different name.
I don't know if it was like A-R-M-A-N-D, Armand, something like that. Maybe there was a saint. I don't know. But she was scary. In terms of the doctors--some of the things that were really hard, like when I had to have physical therapy, your tendons and everything get tight, so it would be very painful. I remember one particular time I was being stretched. I was too young to really know a lot of curse words, but I must have heard people curse at some point, but I think I cursed this PT [physical therapist]. The bad times with the doctors, I think, is similar to everyone's experience. When you went to the clinic, or in the hospital there are rounds, and people come and they discuss you as a case, not as a person. That used to be disconcerting, I guess, is the word. You don't feel comfortable in a setting like that, because they're discussing you like you were a specimen. I understand the purposes of teaching, but in those days, I think especially, they had very little--some doctors were extremely nice and kind people, but during rounds and all, you're a diagnosis, you're a condition, and that's how it was presented, so that would be difficult.
Whenever I went to clinic I was always a wreck that they would want to put me back in the hospital, and I didn't like being in the hospital. You adjust and you make friends and everything. It's very boring in the hospital. At any rate, I would always be nervous if we had to go to the clinic. I was a wreck. When they were deciding--I went in once for a two-week period to see if I needed spinal fusion, and they put a cast on me, and I guess they felt I didn't need it then. Then I went home. The next year they said I needed it.
I guess some of the worst experiences for me--they were going to make a decision, I guess, what they needed to do. There was this one very big Texan, a doctor. When I went in I had my underpants on. He didn't say anything to me. He grabbed me by the throat, and he just held me, suspended me in the air, and he's pointing out my scoliosis. That was a pretty horrible experience. He had the bedside manner of Attila the Hun. So when I went back in to have the surgery, the way they did it when I was having my cast put on, they put a piece of leather that went around your head, and it would hold you, and they hung you, but they really didn't explain all of this.
I was very close to my mom, so that was always wrenching to me, having to be separated and everything. Every day I was supposed to have the cast put on. So what day do they decide they're doing it? The day that the visiting hours are held, so I didn't
― 60 ―want to go, because I would see my mother and father. They take me upstairs and I'm unhappy, and they hung me--they put this thing--and then they hang me, and I was crying, and I was angry, and I spit at the doctor, and he slapped me.
Yes, it was quite an experience. And then when you get your cast put on--I don't know if you've ever had a cast--
This was plaster. First it's warm, and then it gets very, very cold and damp and until it dries you really are in this yucky cold sort of semi-wet thing. The first night with that, and really for a couple of days afterwards, it hurts because you can't move your leg. So until your leg gets used to being immobile, your hip is hurting you.You know, if you're laying in bed, you want to move and you couldn't move. So that was pretty awful. I had some very nice doctors though. I had Doctor Branigan, I remember. He--when the surgery had to be redone--when you tell a child you're coming home, this is what's going to happen, it's like, "That's what you said. That's what should happen." There's no, "Well, it didn't quite work out," to a child. [laughter] You're not interested. It's, "You promised. Now you're telling me something different," and it's not happy news. I remember him drawing the spinal column and explaining what happened, and I was crying away and I said, "But you said--" and he clearly felt bad.
There were doctors that were really nice. I think the nursing staff generally was extremely nice to us all. I'm better about going to see doctors now, but for a very long time I really didn't like going to see doctors. It always made me nervous. I guess that would be it, because it always meant being separated from your family and all.
Parents' attitude toward disability, home instructionJacobson
What about your parents?
My parents? What was good is that they had expectations for me. I think if they had fears, or what was going to happen to me and everything--it wasn't that it was said to me, "Oh, you can't do this." They were clearly--and I'm sure you met them--people who in their families it's like, "You're disabled. You have enough to deal with. You shouldn't have to do anything else because you're disabled." I would say with my parents, when I was very little, it was more like my mom, because my mom was a homemaker, so she was with all of us. There were some unhappy moments, but it was like, I played on the street. I couldn't do stairs, not because physically I wouldn't have been unable to do it. When you're wearing a full body brace, they taught you to do what they call a jackknife: you put your hand on the railing, you put your crutch, and you lift your body and you pivot your hips back and you swing your legs back, because you can't bend your knees. Some people learn to go up forward. I couldn't go forward. But I have a fear of being on the edge of something. It was pre-becoming disabled, because I remember being down in the subway and never having to be told, "Don't stand near the edge." I was always
― 61 ―standing way back from the edge, because I didn't like being near the edge of anything. So, for years I'd have to be carried down two flights of stairs.
I was on home instruction when I first came home. Some of the funny things. When I left the hospital, I was in the second grade. When I got home, they [The Board of Education] provided home instruction, and the teacher felt I wasn't advanced enough to be in the second grade, so she had me pasting pictures, cutting things out of magazines, and my parents would argue. My father would say, "What is she doing? Why is this kid cutting things out of magazines? What is she learning?" My mother would say, "Well, she's the teacher. She should know better." So there would be those kinds of arguments. Though that first year, I didn't learn very much.
Then I was fortunate. I got really good teachers, and I really learned a lot. You're getting five hours of schooling a week. I remember I had one teacher--I liked history. I liked stories and all of that. But when I first started reading, I would throw in articles of different words, and one of my teachers taught at a yeshiva at night. He scared me, because when I would read something that wasn't there, like add an article, he would yell at me, and I was terrified of the guy, but I think he frightened me into reading better. Some of this is funny stuff. Of course, he's working in the day and at night and he'd sometimes fall asleep during a lesson, and I'd say to my mother, [whisper] "Don't wake him!" [laughter] when she would walk into the kitchen where I had my lessons.
Then I had a teacher--one was a daughter of the American Revolution and she loved history. I liked history. She didn't like the public school books; she'd have my mother get Catholic school history books. So we had history. Then I had art. I have no art abilities, but I learned to make little things. I was terrible. I still am terrible at math. But I had a teacher, and she did flash cards, so I learned my multiplication tables and all of that.
The teachers were provided--
By the public school system, yes.
Attending public school and issues of accessibilityMcQuade
There was one point where they wanted to put me in public school. Wherever this neighborhood was my parents didn't like it and the school to me it was reminiscent of the hospital and I didn't want to go there. They had the kids taking naps in the afternoon on cots. When I actually went to school, it was high school--it was a health conservation class. If you couldn't go out to the rest of the classes like everyone else, if you couldn't leave your homeroom, all of your education was in this room. If you could go out to the classes like all the other high school students, that was your homeroom, and you just went to class.
What did you mean by if you couldn't go out?
― 62 ―McQuade
Some of the kids, whether it was that they physically were unable to go to the other classes, or there were intellectual issues that they needed the one-to-one, some of us got all our education in the homeroom class, and some of us went out to classes. I'm going back. Like on home instruction, I did all of grade school on home instruction. That was an issue for me. I wanted to go to high school. I wanted to go to school. You're asking about my parents: this was a debate between my parents. My mother was supportive of me going to high school. My father--Catholic school was where everybody went. Public school was if you were failing in Catholic school, and it was not considered a good thing to be going to public school. My father was afraid people would maltreat me. Public school had a bad reputation. My mother was very supportive. And what had been happening physically, the Visiting Nurses Service sent PTs to give me physical therapy. My mother learned to do physical therapy and put my brace on, and then as I got older I did it myself.
But, they [the PTs] were trying to teach me how to do the stairs, and they were trying for years. This was in the hospital in rehab. They used to teach you to fall on a mat, and then pick yourself up. Because I had this fear of being on the edge and falling, they had to kick the crutches from underneath me. I couldn't let go and just fall. I just couldn't do it. We'd spend hours on the stairs with my hand taped to the stairs, trying to get me to swing off the step, and I was afraid of falling. So what one visiting physical therapist got the bright idea to do, was, we call it desensitization in psychology. We bumped down and we worked our way up. Now, I had fourteen steps, this was the first flight, then another fourteen steps. So if you're afraid of being on the edge of something and afraid of falling--it's not heights, I don't get dizzy, it's fear of falling down I guess--this is really tough stuff. So we worked our way up, and finally I went and could swing off the top. Every once in a while this fear would come back, even years later, and I'd be like standing there, and I'd have to like talk myself to swing off that first top step.
But when I was able to do the stairs, then I could go to the bus. The bus had a lift for the wheelchair, but you had to be outside; they didn't come upstairs to take you down.
Why couldn't you go to parochial school?
Inaccessible, inaccessible. That's basically it. The church was inaccessible. The school was inaccessible. As you know, the public schools were not accessible. You had certain schools with segregated classes. Especially grade school, it was all segregated. There was no such thing as integration or mainstream or whatever you want to call it. High school--this is also interesting--you had to be self-sufficient. You had to be able to take care of yourself in the bathroom and so forth. You were about fourteen when you're going into--I was about fourteen because I was held back that one year--and you had to be interviewed by the principal to see if they would accept you. There were very few schools, and they still have the right at this point to refuse to accept you.
I went to--it doesn't exist under this name anymore--it was Eli Whitney Vocational High School. I knew I wanted to go to college, but there were only certain schools that you could go to in your area, and they still could refuse to take you. So when I went, I remember being mortified when the principal asked me if I could take care of myself in the toilet. At that time, you didn't have these discussions with older men. That was kind
― 63 ―of mortifying, but they agreed to accept me, and then I was bussed there and I had my homeroom. It was mixed. All the disabled kids, seniors, freshmen, everybody was in that homeroom, and then you went out to classes, if you could go out to classes.
My high school experience was basically integrated. The interesting thing, like when we talk integration and mainstream--I equate this with integration of black people--it's sort of if you could put them in the same school, but the kids in your homeroom are basically the kids you socialize with, so even though you could have sat with anyone, all the disabled kids sat together, not because people wouldn't sit with you, but because these were your friends; you got to know each other.
I was in other classes, and I made friends with other people, but my closest friends were all disabled because those are the ones you got together with in the morning, and some of you are on the same bus, so we all ate together. Even though we were in an integrated lunch room and all, we all ate together.
― [Tape 1, Side B] ―McQuade
I'm going to go back for a second with my parents. The really good thing, I think, is that they rarely treated me differently than my sisters. Every once in a while they would try to give me preferential treatment. We were always fighting. When you have three, it tends to be two against one, and sometimes you're the one, and sometimes you're part of the two. So, I remember one occasion we were fighting about a TV program, and my mother said, "Oh, let your sister watch what she wants; she's handicapped." All of us turned in unison and said, "What does that have to do with anything?" But in general--and "handicapped" was the preferred term to "crippled" back then. In general though, what things I could do, we did as a family. Now there would be activities where I would be left out. If you had to travel by subway--my parents didn't drive--then I wouldn't be able to do it.
But I remember one time, and I think this is a good thing to relate to people, I played on the street. You grew up in the Bronx; I grew up in Brooklyn. You went down; you played on the street. You sat on your stoop; you played on the street. Other places don't understand stoops, if you're not from the city. So, we would play on the street with the other kids. Sometimes the kids would take turns riding in my wheelchair. Sometimes we played hide-and-seek. We basically played on our block, until my sisters reached a certain age. They weren't allowed to cross the street by themselves. So you stayed on one block, and maybe you'd go to the other side of the block, but you basically didn't cross the street.
So there was a party. Some of the girls that we played with, they were having a birthday party, and I knew this, but I wasn't invited. The night of the party I kept waiting to see if I was going to get invited, and the night of the party--the party rolls around, no invitation. So I'm upstairs--I was about eight years old--and I'm crying. My mother said, "Well, I'll take you to the movies." "I don't want to go to the movies. I wanted to go to a party. Why wasn't I invited?" and I'm crying. My mother said to me, "Denise, you have to make your own way in this world. People are not going to not do things because you can't do it. You have to find your own way. The world won't stop for you." I wasn't happy to be told this [laughter], but it was a good lesson, especially in the time when she was saying this. This was the 1950s.
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Now I know my mother--she would never admit this--but I know she went to the mother of the child who was having the party and asked that I be invited, because my mother came up and she said, "Oh, you were invited. You just have to put your dress on and we'll go." We put little dresses on then, if you remember the fluffy slips and everything. I said, "No, you went and asked her. I don't want to go. You asked her," and she said, "No, I didn't. They did want you to come," so the desire to be at this party won out over pride.
I went to the party. But it wasn't meanness on the part of the kids, because we played on the street. But it was like, because everyone else was in a certain circle, these would be kids, they all went to the same school. Everybody went to Saint Anthony's; that was our parish. Kids played together, and you wouldn't be part of their consciousness to be invited to this party. Again, they're up a flight of stairs--two flights of stairs--so I had to be carried. So people--it's like, if you're not totally in the circle like on the street, it didn't matter--you were just running around on the street and everything. So there were things like that where you weren't part of everything.
Deciding to attend church, constraints on social life, personal expectations for the future, influential teachersMcQuade
For example, there would be the Catholic Youth Organizations. Synagogues probably have the same thing. They had dances then, so kids, they would reach a certain age, they would go to dances. There would be parish activities or sports or something. All inaccessible. Even the church was inaccessible, because I would receive communion and all of that at home. I didn't really go to church unless I was in the hospital, which was a Catholic hospital or until I could do stairs, because there were tons of stairs at this church.
Were you just using a wheelchair?
Always used a wheelchair. Even with my braces, I never could walk that far. What finally I decided, with the church, I said, "I really want to go to church. I'm able to do stairs. I should be able to walk those stairs, too." And then there were some steps without a railing, which my sisters and my mother would pull me up. I started to go to church somewhere when I went to high school. I said, "You know, if I'm able to do these stairs, I can do that," and then I started to go to church. Prior to that, we made--you know how you have bar mitzvahs? We have confirmation around the same time. So I was confirmed and all of that. That's where having a disability--you were part of things where you could be, but you're also separated from some things.
Some of the things that I noticed when I learned to drive: I have a lousy sense of direction, and all of my sisters and myself, we have this problem with our lefts and rights. Like we say, "Go right," and we're pointing left. We all do it. Your husband will say to you, "Do you really mean left? Or do you mean right?" Something is not wired properly. But my sisters actually have pretty good senses of direction, except for the left and right thing. So one of the things I learned--I was being pushed everywhere, no curb cuts; they did not exist in our neighborhood. Everything had to be walked to.
― 65 ―
With my girlfriends, movies were a big thing. That was what you did on afternoons, like Sunday afternoon or Saturdays or whatever when it wasn't a school night. We would go up to the movies or you'd go to the local greasy spoon. I would participate in those things, but I didn't go to dances. Again, this constrains your social life because going to dances, aside from being on the stoop and talking to boys, you meet boys at dances or went to school with them. In that sense, your social life--you would be doing those things at a later stage than your peers in many cases. I mean, you're interested in boys, but your ability to meet boys was constrained. When I went to high school, I met some boys. But, of course, who do you like when you're in high school? You like the seniors. The freshmen are geeks. You're probably a geek too, but you just don't see yourself that way.
In high school, I would talk to some of the boys, like the senior boys. This is both a pathetic story and a funny story, in retrospect. Some of these people, you remember the names? Angela Thompson. When I went to high school, Angela Thompson was a senior; that's where I first met Angela. A woman by the name of Edmee Rodriguez, who I later on connected with, she later on became president of our board of directors at the center. She was a senior. We were not as friendly. I became really friendly with Angela, and we maintained our relationship after she graduated. There were two boys that I was friendly with. One of them I kept up with after he graduated. They were all seniors. And one, we lost contact. Then there are the girls that were my peers that we stayed friendly for a time. But I went to college; they didn't. After, I don't know what happened to them, but this was the thing about in terms of my parents having some--I never got the sense from my parents that I wasn't going to have to go out and earn a living and make my way in the world. Other kids, that wasn't communicated.
There was a girl that I knew from the hospital who was in our class who was bright. She had juvenile arthritis. She should have gone to college. She graduated high school; she was home. That was her life. That was going to be her life. Some of these other girls, I don't know what happened to them, but there wasn't an expectation to go on.
What did you think about it at the time?
About them not going on?
I thought it was a terrible waste. I thought, this is really horrible that this is going to be your life, and this is what you think your life should be. For me, I didn't have big dreams. I didn't think I was going to run a major corporation. In my social milieu, girls either graduate from high school and went to work, or you went on to college and then you went to work. The expectation was you would work; you would get married; you would have children.
For my personal expectation, I figured I would stay home for a time until the children--daycare was not a known thing. There was kindergarten; there wasn't daycare. I figured when they were old enough to go to school, I would probably go back to work and whether I'd work full-time or part-time, I had no idea. But I had my life sort of planned out. Around twenty-five, I would meet Mr. Right and then I would get married and have children and the whole nine yards.
― 66 ―
So at any rate, I think where I was very fortunate is that if my parents had doubts or questions, they didn't share those negative concerns with me. My mother was very practical. Because we were women, you more or less talked things over with your mother. Some things you talked over with your father. But, if I had ideas--like, I used to be interested in Egypt, so I thought I wanted to be an archaeologist. This is not exactly a practical career choice. [laughter] Wheelchairs on sand is not too cool. Even though they have the big tires now. So at any rate, my mother would say, "Well Denise, archaeologists have to be able to travel. They have to be able to go on digs. How would you do all these things?" She wouldn't say, "You can't do it." She would just say, "How would you do this? This is what this requires you to do." Then another time I thought I wanted to be a reporter, and she said, "Yes, but you have to go to all these places. They have stairs." I mean, access was just a pipe dream in many cases.
So, in a sense, it made me think about things, and I knew--it's like, some of my career choices, some might not have been the wisest choice, but at the moment, I also knew I needed a car. Transportation is--it's ironic in some ways that I ended up working in transit, but transit was one of the major, major issues for those of us with physical disabilities. And that for me, it made me make certain decisions. Because when I was graduating from high school, I surprisingly--this is really funny--not funny "haha," but like a concern. I was on home instruction. I wanted to go high school, but I was afraid I would be laughed at. I was afraid I was going to be stupid, that the other kids would be more advanced than I was because they went to school. When I went to school, that wasn't the case. I'm not a genius by any means. I know you get tested by DVR [Division Vocational Rehabilitation now known as VESID] if you want to go to college and all of that. I have no idea how high I tested, but I tested well enough that they would fund me for college.
So at any rate, I was really nervous. When I went to school, I was fine. On home instruction, I had a really very fine teacher. This guy--in high school one of the teacher's was named Greenberg. On home instruction I had Mr. Greenfield. It was really interesting, because my parents are conservative. He was a liberal. So there would be interesting discussions. I'm a moderate to this day, but in comparison to my parents, I'm like a Red. So we would have interesting discussions. He was a definite liberal. He tried to teach me algebra. It just didn't get through to me. My question was, "But why do you do the same to this side as you do to the other?" It just didn't compute. When I got to high school, of course, I had to take algebra, and I was like, "Oh God," but somehow it clicked. I met him one day. He was coming to the school. I guess there must have been another student he was visiting and I met him and I said, "Mr. Greenfield, you'll never believe this, but I'm doing good in algebra." He was laughing. I said, "It just clicked."
The other thing that was good--I know I'm jumping all over the place--but there were good experiences with the teachers I had, because they were so dedicated. If he had a cancellation, he would come. I wouldn't say I always appreciated him coming, because it was just like, "Oh no, I already had the school. I don't need another hour!" But it was like he was really dedicated. I had a number of teachers that were like that. So he would give me extra time. When I did get the good teachers, I guess I had enough [of them] that I wasn't behind when I got to school. Of course, it's a vocational school, so the academic standards in public school were lower--sixty-five was passing; in Catholic school it was seventy-five.
― 67 ―
Class president, the prom, class valedictorianMcQuade
So at any rate, with the whole high school experience, they didn't have dances. They were kind of unique in that seniors, they had one day. It was like Senior Day, and they got dressed up in costumes. I got elected. I knew people in school, because I was in the regular classes, and I was asked to run, I think, for school president. The school is largely black and Hispanic, so I ran against somebody whose last name--a black guy whose last name was Washington, and I think it was Jesus something--I think that was his first name, a Spanish guy and a black guy. I really got into the campaign, so I made flowers. My sisters and I made paper flowers out of--they even taught me one time how to make flowers out of tissue, so I came in. I had little flowers with "Vote for Denise" and paper tags on them. I just went all over the school. I think the flowers probably did it. I won the election for president of the student body.
How big was the school?
It was pretty big. There were several hundred of us that graduated. The auditorium seemed pretty full when we were there, but of course, that would be the parents and everybody. At any rate, here we are, and they decide this year--there's a student body. I couldn't participate in any kind of--not that I was a sportsperson--but I couldn't go to anything after hours, like any of the clubs, the extracurricular, that required transportation, because the bus came, you had to leave. I believe they still do that. So I was on the school newspaper, because I could do that on my lunch hour, if I had to interview somebody or write an article or whatever. That was the extracurricular activity.
They decided they wanted to have a school dance, a prom. I said, "But the kids in this school are not that well-to-do; it's going to be very expensive." But also, to be totally honest, I really felt like, "Oh my God, I'm going to have to get a date." I wasn't dating anybody. So part of it--there was an ulterior thing, but democracy ruled; we were going to have a dance. I had a choice. Many of the guys I knew had graduated, and the guys who were in our school you didn't want to date; I didn't want to date them. I'm not saying they wanted to date me, but these were not guys that you would want to date. Everybody in my homeroom, all my peers, girls, everybody had a date. I'm the only one without a date, so I wasn't going to go. Then I'm told because I'm president of the class, I'm expected to go, and I have to give a speech. Well, I'm terrified of giving a speech, and I'm mortified to have to go to a dance without a boy. My mother's saying, "Well, you can ask one of your cousins." I said, "I am not going with my cousin. If I don't have a date, I'm not going to fake it and drag a cousin along," so I begged my sister Ginny to come with me. I just couldn't face it alone. I said, "I just can't be there all on my own. The only girl at a table. The only wallflower. Everybody else with a date."
Well, it turned out worse than this. We get to the prom. No one's date shows up. It is a table of disabled girls, no dates. This is more mortifying to me than if I was the only girl without a date there with my sister! I'm sitting there thinking, oh my God, I can't believe this. Everybody was dressed really nicely. We didn't wear long gowns. They wore shorter dresses then. This was like '66. So the moment comes for me to give my big speech. I had written a paragraph. I'm shaking. I couldn't stop shaking. So they throw the mic, and I'm going to give the speech, and the principal says, "Thank you
― 68 ―very much. I'm sure whatever Denise said was good." [laughing] Nobody heard it. I'm terrified. Something went wrong with the mic. So here I am. I had to be at this damn dance, right, to give this speech which nobody heard, and we had to sit there through this entire dance. And the music, it's rock music and--.
Why didn't the mic work?
Something went wrong with the mic. It was just some kind of foul up; I don't know. I said to my sister, "I can't believe this. I can't believe my luck that I have to sit here mortified with a table of girls. Nobody's date has shown up. We're all disabled, and everybody has to think, oh those poor disabled girls who couldn't get dates. This was my prom experience. [laughing]
I had the highest grades. We had regents, which they're bringing back now. I was valedictorian of my class. If I was in Catholic school, I would have been in the top ten, but I wouldn't have been valedictorian, because you had to have higher grades. But I was valedictorian. So that was another agonizing experience, having to work on speeches. I seem to have a big mouth for everything other than giving speeches, because it was like the woman was saying, "You have to speak louder." They went over your speech. You had to make sure you were writing so that the people in the audience would understand. I had something like, "The phoenix rising," some crap like that. They took that out, because no one else was going to know "phoenixes rising" in our school. It went better. The mic worked, but I was very nervous. At that age, you're a wreck anyway. It's just nerve-racking to have to speak in front of people. That was some of the high school experiences. Generally it was good. I had friends. I really had very good friends in my homeroom. But it was sad to think--not every one of those girls would--because we were mainly girls graduating in my year. I don't know if we had any boys graduating.
Sixty-six. Some of the girls probably, if they weren't disabled, wouldn't have gone to college, but they would have gone to work. They would have done something. That was kind of the sad thing to me, that so many of these girls, it was like there wasn't going to be anything else for them. That was the highlight of your life rather than the beginning of your life. That was kind of sad. I wasn't at that point where I thought about changing the world. I thought about making my way in the world, but not changing the world.
My first college, this is where the transportation comes in. Usually people had a lot of fights with what was then DVR. It's VESID in our state, but then it was DVR.
DVR, Division of Vocational Rehabilitation, which they changed to Office of Vocational Rehabilitation, OVR. Senior year, or the junior year, you met with a counselor, and they would talk with you about what you wanted to do. I said I wanted to go to college. My counselor wanted me to go for four years. I wanted to go for two years, because I wanted to get a car. We were talking about--I think if my counselor
― 69 ―knew of more careers to talk to me about, I might have been willing to go for four. But I said to him, "I like history. I like English. I've no desire to teach. What am I going to do if I go to college and I get a BA?" I said, "Well, what would I do with a college education?" He really couldn't tell me what career I would go into, so I said I would rather go to a two-year college. They had legal secretarial program at a community college. I said, "This way, I can earn a living. I can save money and get a car, and I can always go back to school." Little did I know how expensive school was or how hard it is to go back a lot of times. So that's what I did.
Attending New York City Community CollegeMcQuade
I went to what was then called New York City Community College, Jay and Pearl Streets, downtown Brooklyn. It's now called New York City Technical College; it's a four-year college now. When I went, you got your liberal arts kinds of things, and you had your major which for me was legal secretarial. Angela Thompson was at LIU [Long Island University]. Judy may have been at the same time. Professor Childs--actually, when Angela was there, it wasn't that accessible. I think maybe Judy came after Angela graduated or as she was graduating, because Angela had to have her wheelchair carried upstairs, and she would walk up those stairs.
What was her disability?
She had cerebral palsy, no speech impediment, but she had cerebral palsy and walking was very difficult. But she walked those stairs, or people carried her up. She was a communications major. I don't know if you remember her? She was very, very nice.
She was very nice. We kept in touch. So she was going to college. I forget if she went out to California then. She ended up--I shouldn't say she ended up--she worked for a time for, I think it was Fairchild. She was in marketing. Then, for a time, she worked for NBC. Or it was the reverse. But she was usually in communications and marketing, and that had been her major. She was a very good speaker and very personable. I remember the difficulties of getting around that campus, so I expect Professor Childs--he may have been there, but I suspect his big effort to make that campus more accessible was the tail end of her schooling, and when Judy was there.
How I got involved with the movement, it's really through Angela. I went to my college, which was basically accessible. Not totally, but basically. We were in this dumpy building that had holes in the floors. The building we went to, it was on Flatbush Avenue Extension. I think it was an old factory, maybe a clothes factory. I went into the building through the service elevator, as we all have used service elevators. They would take garbage off, and the rats would run off, and I would go on. I was being transported. Again, it's like why we have the requirements we have on paratransits, is everyone's experience with these private companies, these ambulettes. That's glorifying them to call them ambulettes. They put you on--they had two doors tied together, or with a hinge. That was your ramp. They tied you with ropes, and you were packed in. So you'd
― 70 ―be riding all over Brooklyn. I'd be picked up at seven o'clock or seven thirty in the morning, get there at eight o'clock in the morning for a class that started at nine, because that was how they had to do their routes.
I went for one year; I think it was there, and then they moved us to the new campus, which was on Jay and Pearl Streets. You registered over there, but our whole department, I think, was over in that school for a time, and then they moved us over. Maybe it was our last year or whatever, because I graduated in '68. It was great. I met really good friends. Not everybody you kept in touch with, but one friend I kept in touch with to this day. She lives in Montana now. She married a cowboy. It was fun. You met new people, learned things. It was also a lot harder than high school. Let's put it that way. That was a good experience.
Confronting prejudice, a high school incident with lack of accessible transportationMcQuade
The transportation part of it was not so good, because you would sometimes be waiting there for two hours, and the vehicle wouldn't come and you'd be calling. That was less than thrilling. Graduating, that was fine. Looking for a job was not so fine. This is pre any laws that protected people with disabilities in our city or in our state. It was an eye-opening experience, because you're basically raised with this idea we're all equal, and democracy, and everybody gets--if you work hard, and you have the skills and abilities, then you get the job. I mean, I knew certainly there was racism, because the civil rights movement was really flourishing then, through the sixties and all. I still believed as long as I had the skills that was the other reason too for wanting to go to college I knew I needed an edge. The disability was going to be a reality that some people were going to have difficulties with. I just didn't know how difficult their difficulties would be.
When did you become aware of that?
Growing up--it's funny because it's different from Judy's [Heumann] experience. Judy went to Camp Gened. That has certain advantages. You know how there are mountain people and there are shore people? We were shore people. I had an aunt who had a house in Sag Harbor, so we went out to my aunt's house. My father had two weeks vacation. We all went out for two weeks to the country, and we went swimming and all.
I never wanted to go to disabled camp. I always felt like I want to be with people I know. Not just that I'm disabled, and I go to this special camp. It never appealed to me. I kind of felt like I should be able to go with whomever I want to go. The advantage, though, of Judy's experience as opposed to mine is that you got to do maybe in some ways more things, because they made things accessible, in a constrained environment, but you got to do more activities than maybe I would have done. We went clamming. We went fishing. We went swimming. That kind of stuff. But you had to be carried because things weren't accessible. I knew there were times when I would be left out of some things, because, like for example--my mother didn't drive, so if you wanted to go to the beach, you had to walk to the beach. It was too long a walk to do it in a wheelchair, except for this local little beach, which we didn't like as much. It was more
― 71 ―of a clamming beach. There would be things like that that you would know you would be left out of certain things.
But, when I went to high school, I felt it was unfair that the transportation didn't allow me to do the extracurricular activities that I might have chosen if I had more choices. One time, the bus operators went on strike, well, they were doing slowdowns, and we had been kept waiting for hours this one time. I just felt it was really unfair that we, who didn't have choices--like we couldn't just say, "I'll go take the bus home." So when the bus came, I remember Mr. Greenberg was waiting, and I said, "I'm not going. They kept us waiting; they can wait for me." [laughter] He said, "Denise, please, you have to go to the bus." So he went to pull my wheelchair, and I had my braces, so I locked my knees and I just stood up and I said, "I'm not going," and he says--
On a highly developed sense of fairness, hierarchy of disability, first job hunting experienceMcQuade
I think the shortest way of saying it is I always had a highly developed sense of fairness, what's just, what's unjust. That's the kind of thing that will make me do something if I really feel something is horribly unfair.
Where did you pick it up?
God knows. I don't know. I've always had that. It's one of those things. I mean, there's how active I became. There's a lot of different things that happened and influences, and I guess meeting other people, seeing that it wasn't just me. If it's just me, I'll do a certain amount if it means something to me. But when you see that it's a group, you realize that there's power in that group if you all work together on something. What happened in terms of seeing it as--it's a conscious-raising thing, and what happened was part of it was my job-hunting experience, and for me, it wasn't any way near as bad it was for many people, because I was able to communicate. Let's face it, if you have a severe physical disability, a speech impediment, a lot of times people presumed back then--some people presume it now--the expectations for you are low. So if you come in, and you surprise the person by sounding semi-intelligent, you've already established something that they weren't expecting necessarily. So, I was able to verbalize.
When you study things about what disabilities are the most frightening to people, blindness is like right up there. That's a biggie. I didn't know until I talked one time to Bobbi Linn that there was a hierarchy within the disability community of disability. You know what I mean? It's like it never mattered to me. You might see somebody like--two of my classmates were congenital amputees. The first time I saw them it threw me, because it's like the gestalt that you expect isn't there. At first it's like, "Oh my God, I don't want to stare," you know, and then once you got to know the person you forgot that they didn't have long arms. I never realized there was some kind of hierarchy. I didn't know that paras were at the top of the physical disability hierarchy, and you go down. I guess in a way when I encountered people who had speech impediments, I felt
― 72 ―embarrassed and had to get the person to keep repeating. Someone said to me, and I forget who it was that said it, "I know I have a speech impediment. Tell me if you don't understand, because I'd rather repeat myself than you not understand what I'm saying," and I then I felt fine. Sometimes if the person--it's like somebody with a really thick accent.
I think it was me.
Do you think so? I couldn't remember who, but I remember from that moment on, then I would just say, "You'll have to repeat it." Or if it was so difficult I'd say, "Okay, let's try this." Because sometimes I talked to people when I worked at the center [Brooklyn Center for Independent living formerly Independent Living for the Handicapped], I couldn't decipher the speech. Whether it's a combination of me and them or them, who knows. But I would say, "Alright, what I'm going to say, we're going to do yes or no, and you're going to indicate the things." Especially when you're trying to find out like "What do you want to do? Why are you here? What do you really want out of this?" So at any rate, I really didn't realize that when I went out looking for a job, some places I didn't get beyond the reception area.
I remember one man came out and he said to me--he walked out. My sister had come with me, because I had to take taxis. I had to pay ten dollars, which was a huge amount of money back then, especially when you're not working. I showed him my resume. You would bring your folder with some of the legal documents you did. Everyone's out looking for a job. All the nondisabled students and those of us with disabilities. He said, "This is very nice, but you really wouldn't work out here. There's not enough room." I was too shy, too nonassertive to say, "Show me. Let me see what we could work out." I was like a marshmallow. I was biting back the tears. It was all I could do not to just start blubbering in the office.
I went on another interview, and they tested you. You could be very nervous. You have to take a typing test and a steno test, and they said I would hear within a certain amount of time. Two of my classmates--I was a solid B student in the secretarial stuff--the legal secretarial--they were like C students. English was not their first language. I'm not saying they were unintelligent, but it was like it was just where we were falling out. We took the test, didn't hear anything. Finally I just called. I said, "You know, I was supposed to hear from you as to how I did." She said, "Oh, we hired two other people." I said, "Oh." I figured that I was too nervous.I didn't do well, whatever. She said, "But I don't want you to think it's because you're disabled." Maybe it wasn't. Maybe she just felt she needed to say that so that I wouldn't feel bad, but it sort of struck me that I wonder if it is because I'm disabled.
I was depressed, and I started to feel, "Oh my God, what's going to happen if they won't even give me a chance because I'm using a wheelchair?" That was the other thing. I wheeled into one office down in the Wall Street area. They had two-inch carpets, so I'm leaving tracks. You can see by their faces that they've never seen anyone in a wheelchair, never in their life. They're looking at the tracks, and I'm pushing down the carpeting. I encountered things like that, so I finally went to our student advisor.
They didn't have a disabled--I know that's a question--they didn't have a disabled students' office there that I remember. I went to our student advisor, and I said, "Look,
― 73 ―are you telling these places that I'm going out to to be interviewed that I have a disability?" and she said, "No. I don't tell them if you're black, Jewish or disabled." I said, "Look, please tell them, because I'm spending ten dollars every time I have to go to one of these interviews, and if they won't hire me regardless, I don't want to waste my time." Then I registered with a--I think it was Catalyst Employment Agency, and they sent me out on--I don't know if it was a couple of interviews, or the first interview, I got the job. I was so flabbergasted. It was like, "You're hiring me? I can't believe it." This was a fabulous job, a hundred and ten dollars a week, which was fabulous money.
Working as a secretary, 1968, story about job search with CIAMcQuade
I started working summer, 1968. I had to pay for my transportation, so that cost me--I came home with eighty-five, thirty-five of it went to transportation. I was living at home, and that's the only place I could have lived, because I couldn't have eaten if I had to pay rent [laughter]. I was taking the car service, and I was saving money to get a down payment on a second-hand car, and OVR, DVR--whatever it was called then--was giving me driving lessons. This was kind of interesting. I started to work. You know, first you're very nervous and you make some mistakes and everything. But every mistake is like, "Oh my God, they're going to fire me." It's things that happen. You have no sense of what to expect. I made friends and everything. The secretaries on Fridays, we would go out. There was a Schrafts, so we would all go out for burgers. That was our payday. We got paid every two weeks. On Fridays, that was our day to party, so we would go out for burgers and all of us would eat together and everything. There were secretaries from other places, and we would get together.
I remember one time--I forget if I was working there six months or a year or what--but after you're working a while, then you start to gripe. There's always something that people are unhappy about, and lawyers are not the best people to work for. There were definite roles and sexism. I don't mean like people manhandling you or anything.
It was private?
Oh yes, a private law firm, yes. It was like clients would come in, we got them tea or coffee. I would get it ready, but I couldn't carry a tray, so another secretary would carry the tray, but I would set up the coffee tray and get them coffee. We're secretaries, but we're also coffee-getters. It was like that. We all sat outside our boss' doors. We were coming back from lunch this one day, and I forget what we were talking about, and this one secretary who I was friendly with said, "No matter how bad they are, I'll always think well of them for hiring you," and I said, "What am I, chopped liver?" I said, "I do my job. I do appreciate that they gave me a chance, but I'm not a charity case. I'm doing the same work everybody else is doing here." I felt really insulted. It's like--you know my husband is nondisabled. I always say to him, "I'm telling you, you're like Saint Larry. Look at that guy. He married that poor wretch in a wheelchair." [laughter]
There was that mentality.
― 74 ―McQuade
People, they really felt like, what a wonderful thing to do. On the other side of the coin, there were so many places that wouldn't give me the chance. They took a chance. They were more liberal. But I felt that once I proved myself then I'm like everybody else.
What year was this?
This would have been 1968. I was hired by them in the midsummer. We graduated in May. It might have been June. I forget if it was June or July. I have another funny story to tell you. This is what an idiot I was, too. People would come to the school who wanted to hire people. There was a guy there from the CIA, and he was talking about opportunities with the government and all of this. I said, "Do they hire people with disabilities?" He said, "Yes, we have people who are blind. We do hire people with disabilities," so when things are going so disastrously on my job hunting, I sent my resume and indicated that I was interested in having an interview.
I have an interview. In fact, we were looking for jobs as we were about to graduate. You didn't just wait until you graduated. We were looking for jobs in the spring before May, so I had sent my resume. The work seemed exciting. James Bond was probably big then or something. There were a lot of spy things in the movies and all, so it seemed like adventure.
At any rate, I had this interview. I had graduated and I started thinking about--I wasn't against the war in Vietnam yet. I was still believing, you know, the domino theory, and we were helping people to defend themselves. But I was starting to have questions, and I'm thinking he told us if you betrayed anything it was a ten thousand dollar fine and prison. I'm thinking to myself, knowing how I am, what if I start to feel something's wrong? So I thought, maybe this isn't the best place for me to look for a job in case I was in a position where I felt something was wrong and felt I should do something about it.
I called to cancel my interview. They had things called tie lines, and it was like you dialed a regular number and it would connect you somewhere else. Somehow, I didn't understand. Maybe I didn't dial an area code, something I did wrong. I'm calling, and I get connected to some place that says they're a shoe factory in New Jersey. I'm thinking, CIA, this is ridiculous. Shoe factory in New Jersey, what a cover. So I'm saying, "No, no, no. I said my name is Denise McQuade. I have an interview with Mr. So-and-so." He says, "Miss, this is a shoe factory in New Jersey." I hang up. I dial again. I get the shoe factory in New Jersey. He says, "Miss, this is a shoe factory." I say, "Come on, it's really okay to tell me." [laughter] "I'm supposed to come there for an interview, it's all right." I call back a third time. "I told you, this is a shoe factory in New Jersey! Stop calling!" So I write this incensed letter to the CIA basically criticizing them for having this ridiculous cover. I get this letter back. I'm lucky I wasn't thrown in prison. It's like, "I'm sorry about your experience." I realize what a buffy I was that I had totally--I should have done something with the number. I still don't remember what I did wrong, but it really was a shoe factory in New Jersey. They must have laughed their heads off. "What a buffoon this woman is!" That was how desperate I was at that point. Then I went on that interview and did get the job.
― 75 ―
Two conferences on disability at Long Island University, meeting with Judy Heumann, the beginning of Disabled in Action [DIA]McQuade
That sort of clued me in to [the fact that] all wasn't fair in the world if you had a disability. Then there was an urban conference at LIU [Long Island University]. Angela Thompson said "Why don't you come, because one of the topics they're discussing"--they would have been discussing racism, maybe--I don't know if the women's movement was like a topic then--"and they're discussing disability." Long Island University, urban studies.
That was the same year?
That was in '69, so I was working a year, or almost a year. It was the wintertime, but I don't know if it was winter in the new year. It had to be the new year. It may have been before you hit spring. At any rate, I went to that conference, and I just listened, didn't say anything, just listened. There was another conference in 1970. Judy was there.
What were they saying at the urban--?
People were talking about discrimination. People were sharing their experiences. They were talking about some of the inequities in education and employment, in transportation and housing. I think they were just talking about all the different things that were barriers to people with disabilities.
I was at the one that just dealt with disability, and I was listening. We went back in 1970. There was another conference. Professor Childs, I think, had organized this part of it. Judy was one of the--either a speaker or a moderator--I think she was speaker. People were talking. Again, I'm listening, and I'm realizing everyone said this last year. I spoke up and I said, "You know, I was here last year and people basically said the same things. There's a lot of us--." These may not be the exact words, but I remember saying some--I know I said this. I said, "We need to get more militant. We need to take action rather than just talking about it."
Before I did this stuff, one of the things I had found was a problem in terms of having a disability was we couldn't use mass transit--this was an individual thing--I felt we should get a tax credit for the cost of our transportation, all of us, because either we had to provide our own or we had to pay for it. If you were using an ambulette or something, you were talking like forty dollars, thirty-five dollars a trip, twenty-five dollars a trip, depending on where you were going. I went to see my congressman. He was an old-time congressman who had a lot of seniority but was pretty disinterested in what I was saying. I had a petition. I was standing out in front of my church with a petition to get people to sign that people with disabilities should get a tax credit. I was beginning to take some decisive steps to do something about some of the issues.
After I spoke up at the meeting, Judy came over to me, and she said, "I was interested in what you said," or "I agreed with what you said. Come back to my apartment with me." So we started talking. I forget if it was later on that year, she had taken the test to become a teacher and then they were discriminating against her. They said because she
― 76 ―was in a wheelchair, she couldn't get the kids out in case of fire and this and that. She was suing the city, the board of education, and it was in the newspapers and everything.
The students at Long Island University sponsored a conference, not just for students. They sponsored a conference for people with disabilities. I forget if Angela told me about it or Judy told me about it, but a lot of different people went to the conference. Because of Judy's notoriety, celebrity, whatever you want to call it, there was going to be press. As it turned out, there was going to be press coverage that afternoon. We met and people talked about different issues. Then they asked the group to break up into groups, to pick what you wanted to work on, and you were to discuss how you wanted to approach these problems and come back with a report. This is just the irony of life.
Who said to come?
It was sponsored by the disabled students organization on LIU's campus. I believe Judy was the moderator. I think it was Judy. There were other people. I'm trying to remember. Handicap--
Handicap Integration Movement.
That might have been it. I don't know if that was the students. The first name for DIA [Disabled in Action] was Handicapped--
Handicapped in Action, that's right. At any rate, we go break off into groups. I went with the legislative group. There was a woman--I think she was there with her husband. He was nondisabled, at least, physically nondisabled, and he was kind of a dominant personality, and because I took shorthand, I was taking the notes. When we came back in to the meeting and we were supposed to give our report, I was the only one who read the notes, so I became co-chair of the legislative committee. It's simply because I took the notes. This guy was leading, sort of, the group.
Do you remember [his name]?
His last name was [Cotheintz?] His wife was Miriam [Cotheintz?] I don't think I could spell it. We came back in, and we gave our presentation. Everybody gave--there was an education committee. There was a housing committee. There was the legislation committee. I forget if there was a communication committee. There were various committees. We decided to form a group, Handicapped in Action. Two weeks later, I get a call from Judy and she said, "You know, someone mentioned that we shouldn't call ourselves handicapped. Anyone could have a handicap, but if you're disabled, it's a stronger word, and not everybody can be disabled." Like everybody wants to join the club, right? At any rate, she said, 'Dia' in Spanish means day and we could use it as a fund-raising thing." I swear to God. [laughter] I said, "That sounds fine. That's fine with me," so with that we became Disabled in Action. Well, Mr. Cotheintz said--I don't remember the first name, I remember the wife--calls me up and he says--
Was it [Al?]
― 77 ―McQuade
God, it might [be], it might. He calls me up, and he's incensed. He wasn't called. I said, "I was called, but I really didn't come up with the idea. I think it's fine. It does make sense to me." But he was upset. I said, "You would have to speak to Judy, because everyone else seems to have liked this, but I didn't come up with this idea." They didn't stay involved.
Early agenda of DIA, early participants in DIAMcQuade
Anyway, from the LIU conference people with disabilities started meeting to discuss working and changing our world. People had heard about Judy's situation. Like Larry, my husband, had read about Judy's situation and was really incensed that somebody who was obviously qualified should be denied a job. He got in touch with Judy. A lot of it was people getting in touch with Judy over that lawsuit. It was a catalyst. So we started meeting. We were taking on the world. We were going to deal with transportation, education, employment, housing--
Who was meeting?
Okay. Bobbi Linn. There was a woman who was our treasurer, Susan Marcus. She's now Susan Hays. She was from Long Island. Larry was the only nondisabled member.
Weissberger, that's my husband. I'm a second wife. He was married to somebody else back then. I met him--I don't know if you remember Ronnie Stier. There was no transportation, so those of us who had vehicles would pick up somebody if they needed a lift. We were meeting, basically in Brooklyn at anybody's house that was accessible. You must remember when we were trying to have borough DIA's to deal with the lack of transportation, we met at your house. Whoever had an accessible apartment or a house, people would go and meet. First, a lot of our meetings were in Brooklyn, then we went into Manhattan. When we did the borough thing, that was really Pat Figueroa's idea, and that was after Judy had gone to California. We tried to have little borough groups. A lot of the DIA people who are currently in DIA from Manhattan, they were the Manhattan borough group. I remember being president at the time when that came about. Then we went to the Bronx. A lot of our meetings were at Ronnie Stier's house or Judy Heumann's house, or wherever else we could meet in Brooklyn. Then a lot of the meetings took place at Judy's apartment at 175 Willoughby Street.
We were meeting. We were making plans. We would have worked on, at that time, the Flynn--no, that was 1975, that might have been later--but we wanted state legislation to protect people with disabilities. I know we worked on city legislation, because first the City Human Rights Law protected people with physical disabilities, then it was expanded to incorporate people with emotional disabilities, but first it was just protecting people with physical disabilities.
On housing, we always wanted to have accessible housing built. I can't tell you the different bills. Back then, housing, it was like a certain percentage of new construction
― 78 ―depending on how many apartments there were in a building, something like five percent would have to be accessible. Bad idea. There's a new struggle going on in the state right now. If you've seen Able newspaper. Well, the state--I'm moving forward many, many years. The state building code was changed some time I think in the eighties, so that it was adaptable housing. You wouldn't have designated handicapped apartments, which was a disaster, because if a disabled person wasn't renting it, it went to a nondisabled person and they didn't need the features, and they still would have inaccessible housing. So first the state code changed. EPVA did a lot of work on that.
Eastern Paralyzed Veteran's Association did a lot of work on the state building code. For some reason New York City has its own building code. So the state modified its building code, calling for adaptable housing. You would have reinforcements in the walls for grab bars in the shower or in the tub, to put grab bars behind the toilets. Doors would have to be thirty-two inches wide. Reinforcements for cabinets could be lowered. It wouldn't be that expensive to make the modifications if the tenant was disabled.
Working for accessible housing, the Mayor's Office for the Handicapped, a demonstration to make gasoline available for people with disabilitiesMcQuade
As I was saying to you, Denise, the issues were those issues. The specific bills and things, I don't honestly remember. I know we worked on different types of legislation. We pushed to have something very concrete. We pushed to have a mayor's office for people with disabilities. It was originally called MOH, Mayor's Office for the Handicapped. The first director of that office was the late Eunice Fiorito. What that office worked on originally--Larry Allison was in that office. One of the big things they worked on, we were having the first gasoline crisis in the early seventies, and they actually overstepped their bounds because then they were restricted--they were not to participate in demonstrations and all. But Eunice was in the demonstration. Pat Figueroa was involved. DIA--I forget if--on Long Island there was ABC. I can't remember--
Architectural Barriers Committee. So different groups had come together to work on having gas available everyday for people who were disabled and had to drive themselves or for those transporting them. So what happened with this one, I have the feeling it was '73, '74, it could have been '75, but we had a very successful demonstration. There must have been about seven hundred people walking up the Avenue of the Americas, Sixth Avenue. The transporters, the ambulette services, wanted the gas, so they transported people for free. Those of us who had transportation were transporting ourselves. We needed the gas, and we couldn't do the alternate days because you might run out of gas and it wasn't your day to get gas. As I've always maintained, if it's a bread and butter issue, people show up. If it doesn't have enough
― 79 ―relationship to people's lives, they don't get involved. So people got involved. We had this major demonstration. We were demonstrating--I think we were near ABC, and there must have been--I forget if it was like one of the governor's offices, but I know we were near ABC. We got news coverage. Pat Figueroa, I think Julie--
ABC TV. There were loads of people there. We just marched up Sixth Avenue and then we picketed. Wherever we were picketing--I know it was near ABC, the television station--they eventually agreed to negotiate with us, the governor's people. Pat Figueroa, Julie Shore--I forget who the other people were--were the negotiating team. Eunice Fiorito was in that. The office was fairly new then. I know from that point on they were banned from being in demonstrations.
Demonstrating for the Rehab Act of 1973, picketing Jerry Lewis' telethon, a "hodgepodge" of activismJacobson
Do you remember what year?
I hope Pat can remember it. Somehow I think it was like '72, '73. I think it was then. I can't remember if it was after the passage of the Rehab Act of '73 or before. That was the other very big effort. DIA was involved actively in that. We went to the demonstration in '72. We were in the demonstration in the park by the Lincoln Memorial for the demonstration in '73. That was after Nixon vetoed it.
Were you involved in organizing it?
I was involved in--not in the organizing of it. I was the grassroots representation. Judy was really actively involved in Washington with the people organizing the demonstration. We were involved bringing the warm bodies, and then when we got there, we were given different assignments, or we were going to be part of the march. Bobbi Linn and I--Nixon vetoed it in '72. Bobbi Linn and my job was--Julie Nixon, I think, was speaking, so Bobbi Linn's job and my job in '72 was to create a ruckus during her speech. So we got up in the middle of her speech and screamed, "No Rehab Act!" and walked out to the boos and jeers of the crowd. I would say a large Republican crowd. We got up in the middle. I'm telling you that had to be hard for both of us, because we were alone. I don't know if there was anybody else in that room. I just remember Bobbi Linn and I had to do that; that was our job.
You came a long way--
Yes, so it was like I think the two of us were wrecks. It's easy to do it when there's a large group. It's harder to do it when there's a handful of you and you know you're not going to be well-received in what you're doing. Some of the other things we did in DIA--like every Labor Day, Jerry Lewis has his telethon. Back then, we were trying to change attitudes and make people realize that certain types of fund-raising, certain types of efforts, while the intention is good that you're trying to accomplish, you want to do
― 80 ―research. The way you're doing it; it reinforces negative stereotypes about people with disabilities. So Labor Day I spent picketing the Jerry Lewis telethon, and we got somebody inside the telethon to raise an issue, and then the telethon moved to Las Vegas the very next year. There was no more telethon in New York. I remember we were leafleting outside.
I remember there was a couple walking by, and I'm handing out the leaflet, and this guy was incensed. It's sort of like when you have an impression that somebody's a good person and they're doing good things, and somebody says, "No, they're not," and it makes you angry. So this man is screaming at me, the girlfriend is trying to pull him away, and I said, "If you're in a wheelchair and you're trying to look for a job after one of these things, then tell me about this method." But he was clearly--it was like you were attacking motherhood and apple pie. [laughter] I guess you can't attack apple pie or motherhood. It was interesting because we really were--when I look back, there was really a handful of us. Maybe several hundred people belong to the organization but of the activists who go out and do this stuff, maybe twenty or thirty of you at different times.
The newsletters--Judy, her mother, me and my mother, and my sister Maureen sometimes would come--somebody would make a promise that they would mail out the newsletter and they wouldn't follow through and there we would be, at Judy's house, mailing out the newsletter. Or people would promise to write something and if they didn't, you would have to do filler or whatever. But there was a lot of enthusiasm, a lot of volunteerism, and people made things happen.
Judy also was working with the board of education, I think, to make improvements there. The Willowbrook deinstitutionalization started at that time. We got involved with--there was a conference down in the lower eastside, and there was a man, Wolf Wolfensburger was one of the people. One of the people--what's his name? This Irish guy, Malachi McCourt, married a woman who had a child who had Down's syndrome, I believe. He was active; she was active in it. There's a conference--The newsletters--Judy, her mother, me and my mother, and my sister Maureen sometimes would come--somebody would make a promise that they would mail out the newsletter and they wouldn't follow through and there we would be, at Judy's house, mailing out the newsletter. Or people would promise to write something and if they didn't, you would have to do filler or whatever. But there was a lot of enthusiasm, a lot of volunteerism, and people made things happen.
Is that the Malachi McCourt--
Yes, his [brother] Frank McCourt wrote the book, Angela's Ashes, yes. He also had a bar in the Village; Bells of Hell, I think it was called. We used to have some kind of events there sometimes for DIA. Most of this was in the early seventies, because I left the board in the fall of '75 when I went back to school. But it was like, we were involved in supporting the least restrictive environments for people, home care. We worked with--it was the National Paraplegic Foundation. There was also consciousness-raising women groups at IRM. Carr Massi was there.
― 81 ―McQuade
Institute of Rehabilitation Medicine, Rusk Institute [Rusk Institute of Rehabilitation Medicine, New York University Medical Center]. Some of it had to do with changing attitudes, people with disabilities talking about their own attitudes, their own feelings, and sort of like coming to terms with themselves and their experiences. Some of it had to do with going around and talking to parents of disabled kids, participating in different events that hopefully would improve the life of people with disabilities. There was the School for Exceptional Children. So you met tons of different people. When I think back, it's like such a hodgepodge of all different things that we were trying to accomplish.
Frieda Zames and earlier disability rights activists and the push toward a united movement inclusive of people with all types of disabilities, disability rights as civil rightsJacobson
Do you have any thoughts about why it happened at that time?
I really think it happened towards the end of the sixties, but some of that sixties--challenging the system, questioning what people took as "this is just the natural order of things." I think that spirit was still there. I think for my generation--it's not like there was never anything done by people with disabilities before. Frieda Zames--I haven't read the book or anything, but Frieda Zames was writing a history of the disability movement. There were people who were involved back in the thirties; that was like the New Deal and people were trying to change the world and improve everything, get us out of the Depression and all of that. There were people with disabilities back then who were basically fighting for jobs. It wasn't, in my view, from what I know of it at least, it wasn't a total full-fledged disability rights movement. It was really people with disabilities seeking employment.
I think that part of the movement--if you remember with ABC [Architectural Barriers Committee], one of the things that was interesting, we were like the young whippersnappers, to use an old-time term, because there was some friction with some of the ABC members. There were people in New York City who belonged to ABC. It was like they had been working for things and here we were coming along, and we were seen as radicals. Almost like we were questioning what they had done. We didn't really see it that way. We were respectful of what they had done.
First of all, it wasn't just physically disabled, even though largely the physically disabled--to be historically accurate, the leadership had physical disabilities. There is no question about that. It was people with physical disabilities who were the leadership and who really pushed the idea that we shouldn't be separate anymore. There shouldn't be the blind working for the blind. The people with cerebral palsy in their own corner. I don't think until a little bit later on into the seventies, we weren't that aware of people who were deaf, and largely the problem there was the communication problem. But as we became more cognizant of the different types of disabilities, we were pushing for a whole change for the whole group. We really saw it as counterproductive that you would have the Epilepsy Foundation working for epilepsy; this foundation working for that, that if we banded together, the issues really were the same. How you solved the
― 82 ―problem for somebody with a physical disability is different than dealing with communication access, because you do it, it's done. Everybody gets to use it.
Communication access really has an on-going cost to it, but it's still a barrier. I realize with deafness, because it's a different language, deaf people generally see themselves as a culture. They don't see themselves as disabled; they're deaf. Leadership will join with disabilities rights people. Like in NCIL [National Council on Independent Living] and all, there were directors who were deaf and all of that. I think it's largely because, unless you become skilled in sign language, or if you have interpreters all the time, it's a real barrier. It's like they were speaking French, and you can't speak French. But it really was the beginning of seeing there should be one united movement. You can work on individual things that maybe have a very specific interest to a particular group, but you needed to unite as people with disabilities.
That was what I think was truly unique, that we saw ourselves as a social movement, as people who needed to unite to work for the common good of all of us. The answer simply wasn't a ramp, and the answer wasn't simply--when we became aware of an interpreter--the answer was that people with disabilities want to be equal participants in their society, and that's the really unique part: That society needs to change, and that it's not all on us. When you think about the rehab movement, the rehab movement was helping us to fit into the otherwise inaccessible society. If you wanted to be an artist--"No, no, no, you can't be an artist. You have to do this, because this is where you'll be able to get a job." I'm not criticizing. For the time it started, that was new, that was not just putting people to make watches or sheltered employment or whatever, but the concept of finding a skill or an employment, that the disability isn't a barrier. You can go to work. But ours went beyond that. Ours was that we questioned, "Why does it have to be inaccessible in the first place?" If we build it accessible, then everybody can use it.
There's some things as we get on later that I think we should take another look at, but I think that what has proven itself to be absolutely true is that when you make things accessible, everybody benefits. No one take the stairs when there's an elevator--I shouldn't say no one. But you go into our subways, more nondisabled are on those elevators than you will ever see a person with a disability. Mothers with strollers. And what we always argued: If you're pushing a baby carriage, if you're carrying groceries, if you're walking, it's easier to use a curb cut. You'll see ramps, nondisabled will be on those ramps. People walk down the curb cut. So, the barriers that we remove--and just the whole idea of communication access. Now you go into a theater, they have assistive listening devices. Lots of people become deaf with old age--my father is a perfect example, profound hearing loss. They have signed performances, too.
All of that was, I think, really unique. If you think about like Sweden and places like that, they've been advanced in making their society physically more accessible, but I don't think anyplace else saw it as like a civil rights movement. I think that is really from America. As we started to see, "We're citizens, yet we can't get into voting booths. We can't get the same education as anybody else. Even though we pay taxes, we can't get into our municipal buildings." That, I think, is what grew out of that, but I think it came out of that whole questioning of the way our society was, and realizing that, "No, no, no, women should have equal rights, people of color--there's no reason that they should have to drink from separate fountains or have an inferior education." It grew out of that.
― 83 ―
DIA's involvement with Willowbrook and deinstitutionalizationJacobson
I wanted to get back to something you brought up a while ago. You brought up Willowbrook and deinstitutionalization. How did DIA get involved?
When the story broke, certainly we were supportive, because we believed that--
Tell a little bit about it.
As far as I remember, and I can't remember whether Judy was contacted, or contacted someone, but what we did was, we reached out to groups working with persons who had mental retardation. I think it was the School for Exceptional Children. It was a private school. That may not be the full name. I remember they came to meetings, and I think we gave a talk.
Our basic position was that--we didn't use the term "least restrictive environment,"--but our basic position was that the resources should be there so that people can live in the community; that the answer isn't putting people into these massive institutions, many of whom, had they had home care, accessible environments, support, would have been able to live at home. Also, I remember the Wolf Wolfensburger conference, the thing that Malachi McCourt was at. Judy had made that connection. That was really about normalization, was Wolf Wolfensburger's point. We were supportive of that idea. If you put people in an institutional setting, and you don't have expectations for them, and you don't treat them as you treat other people in your society, they're not going to fit into that society. It was the whole argument of you need to be part of the society rather than separated from it, as much as you can participate.
It was such a horrible, horrible story, about the conditions and everything. I think in a way when Geraldo Rivera broke that story, he also became, for a time, interested in general disability issues, because he did a story one time. I remember when I was with DIA, we were talking about architectural barriers, employment barriers. I was one of the people talking about those issues with him. I remember we were walking through Central Park and he was showing some different types of barriers and things, and we were talking about physical barriers, attitudinal barriers, things like that. This was shown on the evening news, ABC TV, I think. I don' t remember the specifics.
We were also talking about just generally recognizing the value of people, and that people should have as much choice--I think that was the other thing--as much choice as they're capable of having. I remember we would give talks sometimes on disability and sexuality, and that's always a big thing in terms of people with mental retardation. If people are in group homes and all, like how much choice do they have? Parents are always afraid of the women becoming pregnant and not being able to take care of the child, not recognizing that people, even if they don't have precisely normal intelligence, that they still have the human need to love and be loved. Sort of like finding ways to deal with these topics, not to be punishing people for a natural human reaction, while recognizing that there's also responsibility there.
I'm sorry for being so vague. Some of this stuff--Judy was our president, and she was the one going to a lot of these meetings and she would bring back to the group different
― 84 ―issues that we should be addressing or participating in, so she was kind of taking the lead on that. Then when we would meet, we would talk about different issues and where did we want to put our focus and all. But the specifics of how the connection was made--a lot of time, I think, people contacted her.
That's fine, Denise, it was a long, long time ago.
Yes, I'm lucky if I remember what happened yesterday.
Consciousness-raising among parentsJacobson
But I have another question. What about--DIA was promoting several disability rights which were very often in contrast or conflict with the medical model. Do you know what I mean?
Say the word. The what model?
The medical model.
Medical. Yes, yes, definitely.
Okay, where were parents in all of this?
We were very interested in talking with parents. We would go out to libraries where parents were gathering. We would attend meetings of parents of disabled students. I think we went to some UCPs [United Cerebral Palsy centers] and all of that. As I remember it, a lot of our time was spent in consciousness-raising among parents.
We would give talks. We would really give talks and talk about maybe our experience growing up, what we hoped to change. I guess try to encourage parents to dream a little for their kids, and to see that things could be changed.
How was that received?
I think some parents were very open to change, or it made them think. I think other parents felt like, depending on their child's disability sometimes, "Well, that's okay for you, but my child isn't like you."
This is with a lot more life experience than I had then in my twenties--some of the things I think we really need to look at a little bit more is that every individual has to be looked at as a person, a unique human being. I think sometimes we don't always, as people with disabilities who have made it in the world. You're a wife; you're a mother, and I mean that in a positive way. It's a big thing to take on the responsibility of raising a child. You know that better than I do. You're doing work; Neil [Jacobson, Denise's husband] does work. You're doing it having disabilities. That's not an easy thing. You've
― 85 ―had to work out homecare as well as everything else. There's some people that won't be able to do that.
I'm going to give you a very specific example. It was maybe a year or two ago. With my current job, one of the things I do is I go out and talk about an accessible mass transit. One of the places that I had gone several times to is a UCP center in Staten Island. Most of the people there either have cerebral palsy and some kind of psychiatric involvement or mental retardation. That's just this center. I realize that one of the myths about people with cerebral palsy is that everyone is mentally retarded. It's a smaller group. But this particular group does have mental retardation. This was also an eye-opener for me. Because when you're trying to dispel myths, sometimes you may gloss over some of the harsher elements of the disability. Everybody I knew who had cerebral palsy was highly intelligent. You, Bobbi Linn, Angela Thompson. Everybody was very bright, very capable. You didn't have a doubt that--and you can get really worked up and say, "How can people not understand this?" But as I've lived longer and experienced more settings, I've met people who have a lot of--this isn't--I don't see the disability as the biggest problem, but some people, their socialization has left them with major kinds of deficits that just won't be counteracted by a movement. Some people won't have the same abilities. What happens sometimes--
I'll tell you the story as quickly as I can. I was giving my talk, and one of the things that was going on, there was a young woman, and they were talking about--very severely involved speech--when they were talking to her, it was like the feeling I had, because I didn't know this person, so I don't know if I talked with her individually or longer whether I'd have a different impression, but my impression was: here's this young woman, and she's very involved, and I don't know how mature--