---

---

II. More on Dia, Promoting Accessible Mass Transit

An incident with a young woman at a United Cerebral Palsy Center, the loss that accompanies having a disability, the stages of disability

---

Jacobson

Before we go on, last night you were telling me a story, and you were cut off. We were talking about parents. [You said] you went places and you spoke about disability. You went to this one center and people were talking about--.

McQuade

That was more recently; that was several years back. I'm a public information coordinator for MTA New York City Paratransit Service [Access-A-Ride], so part of my job is to go out and give presentations. I don't go and do as many presentations as some of the other people in my office. One of my colleagues who also does this is a wheelchair user. He does more presentations than I do, because he'll do the ones where people are applying for paratransit. We call those "application sessions." They'll review the applications that people have and take their pictures, things like that. The kinds of presentations I usually do will be about Access-A-Ride, which is what we call our paratransit service, and mass transit. We really try to push the mass transit. We have a very extensive mass transit bus system. We have like 4300 buses, and they're all accessible, so we're encouraging people where they can to use it, and we're encouraging people where they can to use the subways that are accessible.

I was there, really, to give a talk about mass transit. There was a lot of interest, questions, problems, about Access-a-Ride. This is a United Cerebral Palsy center, but this is in very modern times. This was about a year or so ago. There were some professionals that work at the UCP. It's a rehab center. They have a variety of programs. Some are rehabilitation; some might be sheltered employment, and many of the people also go out to work. I shouldn't say many, a number of the people.

One of the things that was being talked about, there was a young woman there, and they were talking about--I think it was a presentation, it was a day when a lot of people were invited from the community, different kinds of speakers. This young woman--I think they were videotaping, if I remember correctly. I don't remember her name, probably in

---

her early twenties. They were talking about how she's going to live in her own apartment, that aides would be provided, and she was getting married, and this audience, they were talking about the work that went on. I think they showed a little video of her apartment and what they were doing, and what struck me was that she was like a showpiece. I really wondered how much life experience she had, how long she knew the person she was marrying. They both had cerebral palsy. She had a pretty pronounced speech impediment. I don't know if her fiancé was there, but what struck me, like the group of people there, it was like, "Oh, isn't that wonderful, she's getting married." This is both the people with disabilities and the nondisabled people there.

It just struck me like--she was like a--I'm trying to think of the right word, in one way a poster girl for what everybody should strive for. I just really wondered how much was she really able to direct her own life. I'm not saying they were forcing her to marry the person, but it just struck me like, "Oh, you meet this boy and this is what you do." I'm assuming they didn't talk about her working. As far as I remember, I don't remember them talking about him working. That's not the only thing to do. It just struck me like, you set her up in this apartment, you set up her life, she's going to get married, she's going to have a husband, they'll have aides, attendants, PCAs [ Personal Care Attendant] and all, and isn't this wonderful? Here's this severely disabled young woman, and isn't it wonderful she's going to live independently? It didn't strike me as real. It didn't strike me like these are probably two people who met, liked each other, and so, of course, you're boyfriend and girlfriend.

What I said to you last night was it reminds me of parents who have young, young children, and they dress them like little adults. If they have a friend who's a boy, it's like, "Oh, that's her boyfriend." It just struck me like this person could not have had enough experience of life to be making a decision to get married. I have no idea how long they knew each other, but it seemed like it was just like, this is what normal people do and see, she's having a normal life.

I found it kind of offensive, I guess, in a way, because it seemed to be that it's fine if she meets somebody and she gets to know this person and they want to make a life together, but it just struck me like she was a project. She was the project for these well-intentioned, nondisabled individuals and they were going to set everything up, and it's like Cinderella meets her prince, and they all live happily ever after

Jacobson

They're putting their own baggage on--

McQuade

As I said, you and I are both married. There's nothing wrong with getting married, but it just struck me like, "This is what normal people do, and we're going to make your life like everyone else's life." It just didn't strike me as a lot of thought had gone into it on the part of the individual who was getting married, on the part of this girl. I had no sense of her--she was excited, but I just found myself wondering, is she excited because everybody tells her this is a wonderful thing, and your life is going to be set up? I just had this feeling--and it's a feeling, because I really didn't get to talk to her--that it's like everybody had made nice and had made this perfect little world for these two people.

Jacobson

Well, it's like trying to prove a point that disabled people are--

McQuade

Are like anybody else.

---

Jacobson

Right.

McQuade

In terms of our feelings and emotions and everything else, some of us are like everybody else, in terms of internal feelings and everything, and some of us aren't. It was sort of what I was saying to you about when I was reading the article about mentally retarded couples who had married and then had children who were not mentally retarded, and some of the problems that arose in terms of how they handled the situations. Children frustrate--as you know--I'm only an aunt, I've only babysat, so I can go home and say someone else can take it from here--but children don't do exactly what you want them to do, and they can be upset and frustrated. How you handle that, it's really a test of your perseverance, your frustration tolerance, everything. Some of the issues that were arising was some of these parents were making very poor judgements about how to handle their anger with their child. Locking them outside, was how a couple handled an unruly child, which is not a good idea to do with very young children.

Again, there's nothing wrong with getting married. There's nothing wrong with having a family if you're really able to deal with it, or there's enough support to help you on the things, with which you may need somebody giving you a little guidance and advice. It just strikes me. We've had such negative images of disability. Let me say it differently. I'm not one of the people in the movement who say, "Disability is just on a continuum. It's just like being--" I'm trying to think of the way this is. I've talked with different people in the movement, and some people feel like disability is just a continuum of how life is. I'm going to use the word "normal." It's just a normal occurrence, yes, it occurs, but to me, having a disability, you've lost something. There's a functioning that other people have that you don't have. It doesn't change your humanity. It doesn't mean that you can't have as fulfilling a life, or more fulfilling a life than someone else, but I don't feel like--I can't say, "Disability is beautiful." You can say, "Black is beautiful." You can say "Gay is beautiful." You don't lose something.

But I remember walking, and I know that there were things I--and even though I was very young, and it wasn't like the--I don't know if your experience was the same, but I found that when we would have groups of people with disabilities, and we would talk about our feelings about disability, I used to think it was much worse becoming disabled later, because you had so much experience functioning in a particular way. Then I met people who had been disabled later in life, and people who been disabled as long as I had been disabled, and it's a very individual thing.

When I studied to be a rehab counselor, there's a woman by the name of Beatrice Wright and she talks about the stages of disability. Part of that is true, but it's not as nice and neat as you would think in terms of when you go through stages, or you may skip stages. I know people who are less disabled than either one of us who have more anger, more bitterness, more self-rejection than I know I've ever experienced. It's such an individual experience for you, and so much of it is your own personality, your own values, how you look at life, and what you want to make out of your life. But I can't go around saying, "Gee, it's great to be disabled!" It's a pain in the ass from my perspective.

---

Disability culture, remembering the signing of the Americans with Disabilities Act [ADA], not minimizing the difficulties of having a disability

Jacobson

What that brings up is another question about the term, "disability culture."

McQuade

Disability--?

Jacobson

Culture.

McQuade

Culture.

Jacobson

Where are you on that?

McQuade

I don't think there's a disability culture. I think there's a set of shared experiences. That when we all talk together, we all have our war stories. We've all experienced a certain amount of rejection. Some of us have experienced some self-rejection to a greater or lesser extent, depending upon the individual. But it's not a culture. It's not like we sing the same songs; we like the same things. We both use wheelchairs, and therefore both of us are going to love wheelchair square dancing. You know? I don't find that. In my experience, I have very dear friends who have disabilities, but what makes them my friends is there's something in common that we had. We went to school together. We laughed at the same jokes. We had some shared experiences, or we like some of the same things.

It's not different than what makes you a friend with a nondisabled person, but that shared experience, there's a bond that comes from that. It's like women who have given birth naturally. They have a shared experience. People who have had trauma, emotional trauma of some kind, you know, people who went through the Holocaust. People like us. We have a shared experience of not only disability, but in a movement, and when we get together we have old times to talk about. We have things to laugh about. We have things to maybe cry about, because some of our friends that were there with us at the beginning of the movement didn't make it to see ADA pass. Sometimes I think of those people and I get very--as I'm getting now--I get teary-eyed. I guess for myself, I didn't expect ADA to come about. You're getting emotional too! We're both blubbering. [laughter]

I didn't expect ADA to come in my lifetime. I figured we'd be the generation that fought the civil rights that somebody else would benefit from. So when ADA passed--a friend of mine, Judy Goldberg, we both went to NYU together. We've been friends for almost thirty years. We both were at the signing of the ADA, and we went to this hotel together. Denise Figueroa was there. I'm telling you, I was saying to them this was more of an emotional moment than getting married. It was such a kick. It was such a wonderful, wonderful day. It's hard to believe how you felt. I didn't feel like crying. I felt like singing, dancing. In some ways it was just such an unbelievable--It was like surreal in some ways, because you couldn't believe it had actually passed in basically two years time. What am I saying? '89, '90, it passed in '90. We couldn't believe it. I couldn't believe it. It was such a thrill, such a kick to see how far we had come in approximately thirty years. I started in the seventies, like you, and that was just an unbelievably happy, happy moment. You knew it was going to be an uphill struggle to implement it, which it

---

is. We've come--as the cigarette commercial goes, "We came a long way, baby," but there's still a lot of things in terms of implementing it.

Jacobson

Yes.

McQuade

I know there's disabled people working, teaching disability culture, but it's not a culture to me. I understand in the deaf community how that can be a culture, partially, because you have a common language. I don't know. My signing stinks, so I haven't communicated enough sign to know how many things are unique in the cultural sense. Certainly a language is something that binds people together, and that is definitely a part of culture. But I don't know if in deaf circles it's all that different, other than how the communication takes place, from everyone else. I haven't been in deaf circles that much. I had professors when I was studying sign language who are deaf. I know people in the movement who are deaf. I know that they don' t see themselves as disabled.

One time, someone came to our center for assistance, and we were going over some things, and my sign was enough to know that she said she would pray for me, and I said back to her in sign that I would pray for her, too. This went over her head. I don't think it translated well, but I didn't feel angry. It was wasn't said nastily. It was said sort of ironically, like, "Though you don't see it that way. We really both have disabilities." For deaf people that I've encountered, it's like there's a great deal of pride in being deaf parents of deaf children. Deaf deaf is what they call it, at least here in the east coast. To me, I wouldn't feel proud if I had a child who had a disability. I wouldn't be suicidal, but I'm sure for yourself too, everybody wants a kid that's not going to have problems if they don't have to.

Jacobson

Except that there are disabled people I know who adopt--

McQuade

Right, I think that's fine. You can identify. You can really be there and know from personal experience some of the things they're going to encounter. I guess for me, whenever I was in a hospital when I was in as an adult and there were young disabled kids, I felt such sadness. I'd have to restrain myself from crying, because they're happy little kids, like any other kid, and you think to yourself, "There's going to be some tough times for you, kiddie." Because you know, until people get to know you, they're first reaction is, "Oh my God, I'd kill myself if I was in a wheelchair." People will say to me sometimes, "You know, I admire you so much. I don't know how you do it." I drive a car. There's a hand control. I learned how to drive. I don' t get the medal of honor for doing this. I use a wheelchair. It's not like--

As I was saying to you last night, I don't want to minimize some of the difficulties, because there are things that I can't do for myself at home, and I need help with. Like the higher parts of the closet. My apartment is not technically an accessible apartment. I can manage in it. But when I was living on my own, I had things on lower shelves. This is not designed for a person using a wheelchair. My wheelchair--this one doesn't actually fit into the bathroom, I have to transfer into a decrepit old thing that I have that's a little narrower. The thing is, it's like on my own, I had to put things in different places. When Larry and I started living together, he could put things up because he could take it down. But if I was on my own, things would be differently organized in the house, because it would be organized just to my particular needs.

---

There are frustrating things. This is also as we were talking about as you grow older and some of your functioning ceases to function as well. There's things that I used to be able to, like if I had to--I used to be able to crawl very easily. I can't do it like that. You should see me, I'm like a shaky old horse. You see that happening to you. Everyone loses functioning to a certain extent as they grow older, but to us you're starting out with diminished functioning. To us, it means more. If I injure my arms, I'm a basket case, because it's like I know I'm so dependent on using my arms for everything, this could totally change the way I live my life, totally change it. I think, granted the person who has full functioning and loses something feels that way too, but I'm just saying it's a more frightening thing.

If I fall, I'm afraid. I took a fall. I had my wheel come off, the front wheel. I got off the bus, I went down a curb cut and I felt myself tipping, and I didn't know what the heck happened. So I had to move, I couldn't just stand there. I was like four blocks away from the office. I'm wheeling along, and I see somebody--I wheeled up this curb cut, and I see somebody that has "Department of Buses" on his jacket. So I said, "Excuse me, I work for the Department of Buses, could you help me? Could you look to see what's wrong with this wheel?" He said, "It seems to be coming--it snapped." I never had this happen before, but it was like this piece that holds this to there--I'm so technical, "this piece"--[points to her wheelchair]

Jacobson

The front caster.

McQuade

It wasn't exactly the caster, it's the piece that holds the caster to the wheel, this piece here. So at any rate, it was coming off. I said, "Do you mind walking me to my office?" We take two steps. The wheel comes off. I fall. I go right out of the chair. Luckily, I must have been fairly relaxed because I didn't expect to go, I didn't break anything. My shoulder was hurting a little bit, whatever I did. This poor man--I was like a chimp holding onto its mother, because he was a very big man. When I talked to him, I had to like shout up. I'm hanging onto his jacket. I'm like a chimp holding onto the fur of its mother. He picks me up, and this other man had picked up my chair, and then we very, very slowly go to the office. That kind of stuff is really frightening.

What did I do? Earlier the year before, in a transfer, I injured my ligament. What the hell was it? I tore a bicep, so my arm--my doctor said it's like a baseball player, you injure your arms a lot. That sort of stuff is a little frightening and all.

I know I'm sort of digressing, but I don't see it as a culture. I really see it's like any group of people who have a common shared experience. I'm talking now about bad experiences, but it could be a good experience. People who went to college together; they have something that connects them. People who go through--they climb Mount Everest together; they have a shared bonding. For me at least, I don't see that makes us a culture. A shared experience, yes. I definitely think when you sit down and talk, you find there are emotions, there are connections that--it's almost like you don't have to use that many words, and people feel it.

It's like that in the same way I talk to my friend, Judy Goldberg. She has osteogenesis imperfecta, so she walks with a cane. In snow, if she falls, her bones break, so the two of us are like really sisters in the snow. We always call each other, and we commiserate with each other. But the feeling, you don't have to say a lot and we just know, yes, I

---

know how you feel. Sometimes the shared experience when you're trying to do something. Like the winter--I don't know if this affects you--but in really, really bad cold, I lose some of the functioning in my hands, and I can't turn things.

Jacobson

I get a lot of pain and get very stiff.

McQuade

Stiff, yes, yes. I know most women our age have some arthritis on their spines, disabled or not disabled.

Jacobson

[Right here?]

McQuade

Yes. You know, I think that. I hope I answered that thoroughly. That's the other thing too. You made me think of something. I was talking with Denise Figueroa, and I think maybe this perhaps makes some difference in your perspective on things. Denise Figueroa was an infant when she became disabled. Judy Heumann was an infant when she became disabled. So there's no recollection of being anything but having a disability. When I was talking with Denise, she didn't have this sense of loss that I've had at different times of remembering back.

Jacobson

When you were--

McQuade

She had polio also.

Jacobson

When you were--

McQuade

Three and a half when I became disabled.

Jacobson

What year?

McQuade

I became disabled in '51. I remember being totally paralyzed, unable to move anything but my head. Before that--my mother especially would tell the story--I ran a lot. I liked to run. I would run away from my mother. I would run away from my grandmother. I just liked to run. My mother said other women sat in the park knitting, and she was jumping fences because I would bolt, just take off and run. I remember running. I miss that freedom of movement.

Jacobson

Yes.

McQuade

To me, I miss that. I don't feel tragic about it anymore. We were talking about being teenagers. When I was becoming a teenager, I think I had a couple of really bad months, because I remember crying buckets full of tears. "Why couldn't I walk?" Sort of like I was mad at God, I was mad at everybody. I snapped out of it, but it was like I couldn't dance. I probably would have two left feet. I don't think I have a lot of coordination, but I wanted to be able to dance. There was one fashion that was out when I was thirteen or fourteen. It was called the Queen Ann heel; it was a little tiny heel. Of course, I'm wearing the horrible old shoes that you--orthopedic shoes. They really were like saddle shoes, but they were with laces. I couldn't wear really nice shoes, and you had the braces, and it just was upsetting.

Jacobson

Ugly.

---

McQuade

It was ugly, and it was upsetting, but I somehow got over that, "My life is tragic."

Board member and steering committee of DIA, Student Organization for Every Disability for Progress, President's Committee on Employment of the Handicapped, fighting for civil rights

Jacobson

I want to go back to DIA. You were president at one time?

McQuade

Right.

Jacobson

Do you remember what year?

McQuade

This is the horrible part. When I left DIA, which was the fall of '75, I was on the board, but I wasn't president anymore. I can't remember if Angela Thompson was president or who was president.

Jacobson

I remember that Angela was president, and I can't remember if you were before her.

McQuade

From the formation, I was the secretary. When we formed the corporation, I was the secretary. Larry Weissberger, now my husband, was the first vice-president. He was the only nondisabled person on the board. Judy Heumann was president.

Jacobson

What did Larry do?

McQuade

Larry was and is a social worker. He read Judy's story, and he was so incensed that it seemed so irrational and so discriminatory to him that here a perfectly qualified person would be denied the right to teach simply because she used a wheelchair that he got in touch with Judy. He was with DIA, I'm pretty sure, I know '70 and '71. I think he left maybe in the fall of '71 or the beginning of '72.

Jacobson

Who was--

McQuade

Susan Marcus who's now Susan Hayes was the treasurer. I believe she was an accountant.

Jacobson

And I think there was a steering committee.

McQuade

Yes.

Jacobson

Who else was on it?

McQuade

This is funny, because there were so many people like Pat Figueroa, Fred Francis. They formed SOFEDUP [Student Organization for Every Disability United for Progress] at Brooklyn College and they got involved at DIA.

---

Jacobson

Yes.

McQuade

Jimmy Lynch. Remember the late Jimmy Lynch? He was at LIU. There would be meetings. This is what I don't remember. What I don't remember was whether the steering committee was the executive committee. There was the executive committee, and then I think there were people who attended the meetings regularly, who either chaired a committee--I know at one point I was chairing the legislation committee. But the people--go ahead.

Jacobson

Let me clarify. SOFEDUP, did that group or DIA ever have--

McQuade

I don't know. Pat could answer that, because what they were doing, Fred and Pat were students at Brooklyn College, and they were working to make the whole city university, all the city colleges, accessible. They were working at Brooklyn College, but it was broader than Brooklyn College. I don't know if there was SOFEDUP in all the other colleges or whether in the work they were doing at Brooklyn College it was to be expanded to all the other college campuses, but they were activists and somehow got connected to Judy, and they would come to meetings. You remember the President's Committee on Employment of--I think it used to be the Handicapped.

Jacobson

The Handicapped.

McQuade

Right. One of the things we wanted to do, we wanted our movement to be a national movement, and we went to the President's Committee meeting. Judy knew about that, and we went to that committee. The first time I remember us going, I think it was around '70. We used to go every year. I remember every year we went. The first year we went, we were critical of the committee. We felt there weren't enough people with disabilities involved. A lot of people from the rehab community were involved in the President's Committee, but we felt that it needed more representation of people with disabilities, that the efforts needed to be directed not just to employment, that employment would not be achieved unless the issues of transportation, education, housing, things like that were also dealt with.

Jacobson

What I remember is that committee was started right after World War II, when there were all these disabled veterans that came out and couldn't find--

McQuade

Jobs, yes, after the war.

Jacobson

They started that committee.

McQuade

A lot of the early legislation, like rehabilitation legislation, really grew out of first, the first World War, dealing with veterans, and then the second World War and Korea. It was really what voc. rehabilitation was really meant for, the other legislation that was out there or programs were from Helen Keller with the blind community, and that's always been separate. One of the things with the President's Committee, the Rehab Act comes up for re-authorization every five years, and the Rehab Act was coming up in--first it was '72. Activist groups were pushing, and I don't know who came up with all of the modifications that they wanted for what became the Rehab Act of 1973, but we were certainly involved locally supporting the Rehab Act.

---

Judy was going to Washington a lot. I forget if she went out to California for a visit in '72. But Judy was doing a lot of traveling and she would bring back or get the information back to us locally, and we would support the bill. When it was vetoed in '72--the thing that I told you about yesterday with Bobbi and I running out saying, "No Rehab Act"--I'm pretty sure that was '72, when we were at the President's Committee meeting. I'm pretty sure, because the Rehab Act had just been vetoed, and everybody was really upset, and we had the first march protesting the Rehab Act not being signed by the president. Then the next part of the year was working for the Rehab Act to be passed in '73, so we tried letters. I don't think we were calling as much because we had a limited budget at DIA. It would be sending out letters, getting grassroots to come down to Washington, people who were interested. Usually it was the people who attended the meetings, and then we would work out strategies, like Judy would report on what was planned, and then we would work out strategies as to what we were going to do, before going there. Then there would be further meetings and information shared, to know what we were doing, what especially we had to do in Washington.

I shared a room with Bobbi, and this woman is dead now, Kathy, and I can't remember her last name. She had spina bifida. She worked. Most of us, if we weren't students we were working, of the small group. It was like a lot of your efforts were to get that bill passed and to explain--and also if there was going to be modifications that were opposed to, amendments that were opposed, to oppose it. That was a lot of the work. Going to the annual meeting of the Presidents' Committee on Employment of the Handicapped [PCEH] in Washington every year was a big focus of DIA's efforts. We would raise issues. We'd try to visit legislators when we went. We would give presentations. The first year DIA members attended PCEH, when we were highly critical of the committee and we got a room at the hotel and spoke about the need for the PCEH to expand its focus and involve more people with disabilities in planning the annual meeting. We felt PCEH needed greater relevancy and PCEH took us seriously and offered us a place on the program. DIA would present at the conference each year.

Jacobson

Who did you talk to?

McQuade

Whoever attended presentations. We were talking, I think, about disability rights. It was just people being, I don't think we used the term "self-directing," but people with disabilities taking charge of their own lives and working together for civil rights for people with disabilities. The themes were basically everyone should work together, not just approach it as single groups, but we needed to be united in the cause of disability rights, and really pushing the civil rights theme, training us to go to work when you couldn't get transportation.

Later on, I think we became more aware of the communication access issues for people who were deaf, but at this point, we were talking about--even if you have the skills, how do you get to the job if you're severely disabled and you can't drive? How do you live if the housing is inaccessible? How do you get to places--ADA called them places of public accommodation--when everything is closed to you. We need to change the world. That sounds so grandiose! It's like one of those old Judy Garland, Mickey Rooney movies, "Hey! Let's go out and change the world! We'll just do it in the barn!" We were very young, and we were very enthusiastic. [laughter]

---

For all real intents and purposes, we did change the world. People still have not been able to take full advantage of the changes that are out there. In many ways, attitudes have changed. Not nearly as much as they need to.

I think one of the problems with this is that here's this wonderful law that we have--not a perfect law, but a very far-reaching civil rights law. Most people haven't a clue about what it means. They ascribe to the ADA powers that it doesn't have. "Oh, it means my apartment has to be accessible." It has nothing to do with housing rights? They have no idea of the rights that it does give them, and they think it protects them in ways that it doesn't protect them. Then the other problem as I see it--this is sort of--what's the old adage, "The path to hell is paved with good intentions"--we've gotten more people with various kinds of disabilities into the educational system than ever were there before. But, along with getting assistance for people who need PCAs or need writers, what we've done is we've emasculated the next generation of people with disabilities, because they're not encouraged to do for themselves what they can do. I was doing more of this--do you want to ask me a question?

Jacobson

No, go on.

Promoting access to mass transit, ADA compliance in transportation, fostering dependence in children with disabilities

McQuade

In promoting access to mass transit, one of the things we do is we work with the travel training program at the New York City Department of Education. It's a really unique program because it works with people with physical or cognitive disabilities other than blindness. That's a separate thing. One of the things we do is we'll bring a bus. We'll have kids. It could be grade school. They could be high school. They may be in an integrated setting. The travel training program really focuses on, I think, kids in the special ed. This false dichotomy between special ed. and mainstream is just wacky. It should be based on what are your needs, and what do you need to do to facilitate you becoming educated. Not this, "You're special ed. You're not special ed," because you may be able to be mainstream, but need special services. I know they have resource rules, but there are some things that don't work as smoothly as it should.

At any rate, when we go out and give talks, most of the teachers in the city public schools are totally ignorant of the fact that we have accessible mass transit. This says several things to me. It says to me, "They're driving to work," because otherwise they would know that our buses are accessible, or maybe they're taking the subway. The subways--we only have about forty some odd of our key stations done. We were going to have like fifty-four, and then there was a local settlement. In actuality, we had a state building code and transportation law that required any public building where a major renovation takes place--undefined major renovation--had to be made accessible. The MTA [Metropolitan Transportation Authority] did not want to have to make every station that they do a major renovation, and nobody agreed on the definition of "major accessible." So the local disability community, EPVA, Disabled in Action, all of that, agreed that they would add on more key stations, so that a hundred of them had to be done by the year 2020.

---

Of course, anything that is touched that there's an ADA spec has to come into compliance. Anything built new would have to be made [to be ADA compliant]. But they felt that this would be a planned accessibility, rather than a station here that doesn't connect to any other station. At any rate, that was what we did locally. But we go around; we want to encourage people to use the buses, if they can, also, the subways, to be aware of what's out there and to get a chance to try it.

One of the things I found in giving presentations is a lot of the families, a lot of the kids don't know about this. I've seen kids with PCAs--aides--they call them paras, right? Paras, and it's like, "Kid, you should be pushing yourself. You can push yourself." There's paras walking along, and you have kids, they don't know their room numbers because the para takes them there. They could learn their room number. I didn't know what streets were down streets, what streets were up streets until I had to drive a car. I could get to the avenue. Somebody had to push me. But I didn't pay close attention to this, because it was irrelevant to my life. When I have to go on a subway, I have to look at a map and ask, "Where does this let me off?" Just like you go to a different city, and you have to do that. At any rate, what I found is a lot of the kids, not all, because there are some kids that are really enthusiastic, but a lot of the kids, obviously their parents aren't taking them on the bus. They still get transported to and from school. I'm not saying that they shouldn't because until you learn it--and some of the children that we do see, they have multiple disabilities. So it's not simply saying to Denise Jacobson and Denise McQuade, "Okay, you go to this corner. The B51 comes here. You can take it to there." It's not simple like that. It's really learning how to safely cross the street, what to do if you get lost, how to recognize where to get on and off a bus or subway. It's really learning travel instruction, mobility instruction.

These are kids who maybe never in their lives has anybody bothered to do this, because somebody's always taking them, so they don't have to pay attention. That part is disconcerting, because it's like, from my understanding, talking to teachers, once something's on your plan, it's hard to get it off unless your parents insist. And these parents are very afraid for their children. They like the idea of having a para because they're concerned about their children being hurt, and the school's concerned about being sued.

There's a big difference to me between saying, "Okay, I need somebody to carry my tray. I need somebody to help me in the bathroom. I can't take notes." The other thing you have to look at with some of the stuff, we have all this technology, right, do you really need somebody to write notes for you? You may need something written down. It's sort of like, why can't the teacher, since you have a plan--we used to have, do you remember mimeographs? It's like why can't notes be handed out? It would save money. You have to write it anyway. I mean, the teacher doesn't commit this to memory and write it on the board.

Jacobson

A lot of high schools in our area in California have websites.

McQuade

Websites, right, and you can pull it up.

Jacobson

Homework is on the website. If someone is absent from school, he can get it--

---

McQuade

Here's one of the things that you see is problematic. In school they'll get some of the technology for the kids. When they go home, they may not have a house where they can take the technology with them, or the parents don't know how to use it. So the kid doesn't get to use it at home. It's like, there's a lot of areas where--I firmly believe this--the reason why these things are not done is because you don't have enough--I'm not saying everybody with a disability has the smarts or the interest or does what they should do, because a lot of times you see people with disabilities in the school system--I shouldn't say a lot, sometimes you see--and some of the people you meet, they don't do anything. They don't have any more knowledge than a nondisabled person. But if you hire people with disabilities who understand technology and know how to apply it, you could really have a more independent person. I think that's one of the real tragedies here, that they throw people at it. You get a person to do it for you. But when you go out on your own as you know, and I know, it's not going to be paid for. ADA doesn't require PCAs.

The trend to mainstream children, the role of the paraprofessional, the misuse of SSI, attitudes about the potential of children with disabilities

Jacobson

One thing I wonder about, and maybe you could comment on it, because you go out and you do the same things. Are you seeing more kids who are more mainstreamed?

McQuade

There are more. The positive side is these are kids who are getting out who might have been kept on home instruction. That's a positive thing.

Jacobson

But are you seeing kids like you were or kids who are more severely--

McQuade

Both. Some of the kids I've seen have severe physical disabilities and probably have some mental retardation. Other kids may just have learning disabilities. Now, they could be very severe, or they could be moderate. Then you see some kids, it's just a physical disability. They're using a chair. I believe every child, whatever you can do--I'm not talking about if it takes you an hour to tie the lace on your shoe, that this is how the hour should be spent. Get velcro. But in terms of doing the things--because, the reality of life is, if you're very, very bright, and you have wonderful skills, you could be very severely disabled, and you will get hired, and the technology will be provided for you, because you're going to offer something. If you're average, and you're going to have average skills, and most people are average, disabled or nondisabled, when you go out, there's no law that says you have to hire the most disabled interviewee that comes into your office for the job. It's not affirmative action.

It seems to me what we want to do--and people have different interests and different skills--that you want to make sure that the person is as independent as they can be, so that what they can do for themselves they do. It's sort of like, to me, you want the person for their personal life not to have to always be paying for people to help you in things that you could have done for yourself. I think what's happening, what I see out there, especially for kids where you see somebody pushing them: get a power chair! What do you need somebody to push you?! You don't get privacy. You get these symbiotic relationships where for the para, they have got employment. Usually they're

---

hiring local people and everything, so they have employment. For the person, they have somebody doing all this stuff for them. To me, it's like the para should be able to be shared with a number of people who need the assistance.

We had a woman, when I was in high school, there was one class I had to go to where there were stairs. It was an old school with a new building connected to it. I had my braces and crutches, but I needed somebody to pull the wheelchair up. I walked up the stairs so I could go to this class. We had a para. The para did that. If you're at lunch, and you couldn't carry your tray--and I can't carry trays most times--the para would carry the tray.

Jacobson

We didn't call them "paras." We called them aides.

McQuade

We probably did, too. Now they're called paraprofessionals, but they were called aides. So there was this one woman, and there were about three of us who might need some help on something like that. What I see is that the kids--here you're in an integrated environment and you should be having all the things we talked about [in terms of ] why we wanted integration. You interact with other kids your own age. How much do you interact with this person there, with these kids your own age? How much do you get to socialize with the kids, you know, the social aspects of school. You still don't get the extracurricular activities.

Jacobson

I remember when I went to school, and I couldn't write that well. So, I would have the teacher ask a student to make a carbon copy. That's how you not only got the notes, but you got to interact. It was an icebreaker.

McQuade

Yes, because the person gets to know you. I question how much these kids get to interact who could. When you meet the spunky kids who are ready to go out there--I'll tell you another--this is a very disheartening story.

---

McQuade

As I started to tell the story: A colleague of mine, he uses a wheelchair, and he was doing a bus demonstration. This one girl, she was saying something like, "Well, I don't need to do this." He said to her--I believe it was him talking--he says--they were talking about what are you going to do when you get out of school. She says, "I'm going to watch TV. I'm going to stay on SSI and watch TV." This is the goal. This is like, to me, it's like the intention was to supplement. When they took the aged, disabled, and blind off welfare and they gave SSI--if you had never worked, you aren't entitled to social security--

Jacobson

That was--

McQuade

It was '72. We worked on stuff like that in DIA. Here's the downside. It's no different than what happened with the welfare program, which at first was meant for people as a temporary thing, like in the Depression, and then later on for people who came upon hard times or something. It wasn't supposed to be a way of life. What I'm seeing, and I hear this from some of the teachers I know because you can get SSI for your disabled child, what happens is a lot of times a parent wants them to get their education, to be in

---

the programs. When it comes time for them to go to work, they don't want that. They'll have them go through voc rehab. They'll try to place them--"No, no."

Jacobson

Why?

McQuade

Because they know that they will eventually lose their SSI check, and the family becomes dependent upon the money. For the person, what often happens is it's like a welfare--it's a dependency mentality. "Why do I have to work?" In our society, somehow it's not getting communicated to these kids through school, or anything else, that people who are capable of supporting themselves do so in our society, and it's not like anyone is saying to them, "Hey, you know, what do you mean you're going to stay on SSI? There's no reason for you to be on SSI." No one's saying, "Your SSI will be cut off at this particular point." So, their view is--

Jacobson

But they also get Medicaid and in-home support.

McQuade

Right. The Medicaid part is really important unless--and I know there's been some changes to how people, when they go to work, the insurance of the company won't cover pre-existing conditions. The Medicaid part is really important, but the downside of what's happening is that the family, first of all, wants all the programs, but they don't really believe that their child, in many cases, can or should work. They get used to having that income.

When you go to work, you may not get that same income; you may lose your job. There's all of these concerns and worries. Not all of this is because the family is a bad family. It's your attitude about what your disabled child should be expected to do and what they can do. It's also--most of society still doesn't see that we should have the same responsibilities as anyone else. It hasn't permeated enough of the levels in our society. It really hasn't. If you sat home and collected a check, no one's going to say, "Hey, that Denise sure is a bum. See we should be out working." If you weren't in the wheelchair, and you're just sitting on welfare, people would want you burnt at the stake. "She's not working, and I have to go to work each day?" I really think the intention was good to get the Medicaid to the people, but I really think that giving money is not a good--other than giving money for things that are disability-related that the family can't afford.

I basically believe in national health for everybody; that nobody should be without their basic health needs met, but I think what happens, the family sort of in many cases--I think in a lot of cases, the family doesn't think about the future. When you're not there, what's going to happen. They don't think about you could earn more money. You have to (1) believe that the person is capable of doing these things and (2) believe that they should do these things, and then see to it that they do whatever they can. I'm not talking about the person who would never be able to earn a living wage. And SSI will allow you to keep SSI until your income, including deductions for a disability related work expense, until you are no longer eligible for one dollar of SSI, that is how the program worked when I was working for BCID [Brooklyn Center for Independent Living]. You can argue about how much SSI there should be and what should be the level of income before you lose anything.

---

But it's a problem. I'm not saying all the students, because I've certainly encountered over the years when I worked in independent living and otherwise, kids that have the same expectations they're going to go out and do. You also have people, a lot of times, who are from other cultures, where there's nothing for the disabled person to do. There may not be enough employment for nondisabled people, and so those expectations aren't there. It's not getting communicated enough, I think, at least from what I'm seeing.

A need for role models for children with disabilities

McQuade

I don't want to paint too bleak a picture, but I really do think that there needs to be more emphasis. You know how they have Black History Month? There probably needs to be more emphasis on people with disabilities who have made contributions in history, because there are. I know, you know, Thomas Edison was deaf.

I like history, so I watch Black History Month, because you learn much more than you ever learn at school. There was a woman who had been a slave. I don't remember her name. During Reconstruction, she became a newspaper writer. She had a disabled sister. She took care of her sister. I don't know everybody with a disability who's done extraordinary things, but I know based on seeing black history, there have to be a heck of a lot more people who didn't necessarily identify by their disability. We know Franklin Delano Roosevelt--I guarantee you the average high school student in the public schools probably doesn't know that he had polio. He, again, because of the attitudes of the time, he didn't show himself with a wheelchair being carried off of trains, because people wouldn't have seen him as a strong leader.

Jacobson

He tried to--

McQuade

Hide it, yes. I understand why because in his time people felt very negatively about themselves if they were disabled. Their families felt that way. A woman I work with, our first director, she was nondisabled. She had an older cousin, Cousin Jewel. We used to talk about it. Cousin Jewel had a very minor disability. Whether she had had polio as a child and it affected one leg, she limped a little. Cousin Jewel's entire life was colored by this fact. I don't know whether she went to work or not; I can't remember. We were talking about it, how the difference between that old generation when having any kind of disability made you like the untouchables in India. "Cousin Jewel couldn't marry. She was disabled." Not that I mean to go back on what I was saying before. It wasn't expected that you could have kind of a regular life if you had a disabling condition. People saw it as a shame or a curse from God, or whatever. Most, not all.

So, it seems to me that one of the things that we really have to push for is that the accomplishments of people with disabilities would be part of everyone's schooling, not just for kids with disabilities. Minor or major disabilities so that everybody--you dispel the negative stereotypes about people with disabilities so that people with disabilities, kids, do have role models to identity with. You don't only have to identify with a person with a disability, but I certainly think there are so many people out there with

---

accomplishments that we don't even know about, that it would really be a very positive thing for kids to learn about, all kids.

I think from when we go out and give talks, some of the kids really relate. They like trying the buses; they try things. There's some kids that--we give talks to everybody--kids with severe autism and everything else. They're not going to be on the bus by themselves, but their families could take them on the bus.

Jacobson

Yes.

McQuade

Everything isn't to me that you'll do everything totally on your own, but it opens up so many more avenues. It's like if your family knows that there's a bus, and the school--you have an after school activity or a weekend activity, you can do it. If you can't do it all by yourself, your family could come with you.

The goal of expanding DIA nationally, Judy Heumann's decision to go to California and her role as a leader

Jacobson

I do want to get back to DIA. You said that there was a goal of having DIA spread across the country.

McQuade

There were, and there are other DIAs, yes.

Jacobson

In your mind, was that successful or not?

McQuade

Was it successful? I was going to say "sexist." No, women were leading it. I think DIA itself, they call it the metropolitan DIA, for like the New York group. I went over to give a talk in Newark to establish a chapter there. I went over to Maryland, to establish a chapter of DIA. I think the Maryland one exists. Frieda would probably--Frieda Zames--would probably keep track of that. I know we gave talks in those places. I forget if there was one in Pennsylvania. I think there was, but I don't know that it's functioning now. So we would try to have--

Jacobson

How about New Jersey?

McQuade

I don't remember. I don't know if DIA still exists in New Jersey. It may have changed into something else. I really do think, both from the CIL [Center for Independent Living] in Berkeley, from the students who formed the independent living center in Berkeley, really the independent living center on the campus on the Berkeley campus, and from DIA. The concept starting getting out. The idea of disabled people--I have to stop and tell you this.

I spent my life correcting people saying "disabled people" in our literature and everything. "People with disabilities," to emphasize for the nondisabled, the person, not the disability. When I talk with people with disabilities, I won't say "disabled people." It's funny, it's a thing that I really try to get across, because people who aren't disabled see the disability. It's obvious, with us you're going to see it first. But disability is the

---

prominent thing for them. So when we do this tape, if we could say "people with disabilities" for nondisabled people. [Interviewee Note: People reading this should realize I mean people with disabilities whenever I say "disabled people."]

At any rate, going back, I think the idea of what DIA was trying to do very much came into vogue. There still are individual organizations representing specific disability groups, but they come together--not that they didn't come together before if necessary, but I think this whole idea of all different people with different kinds of disabilities working together, that idea was adopted. The National Council on Independent Living, the state associations, that there are independent living centers, I think the idea of that spread. I think the people in Berkeley, and the people--certainly for the idea of a center--but I think the DIA concept, the concept of people with disabilities uniting together to work for, first there's civil rights, but then to really change the world that we lived in so that we could be integral parts of that world as much as we want to be.

Jacobson

Do you know anything or have any knowledge about when Judy went out to California? Do you have a sense of why she went there?

McQuade

I think she had heard about it, and she wanted to find out more about it.

Jacobson

Was part of it to promote this idea of Disabled in Action?

McQuade

This is funny. I know we talked about when she was going out. I know she had heard about the center and she wanted to find out more about it. It might have been to promote the civil rights movement. Because that really--that wasn't a movement per se beyond Berkeley, that was to really provide, as best as I understand it, the idea was to provide supportive services so people with severe disabilities could participate in the Berkeley campus. So I think it probably did have to do something with that. What I was going to say to you, when she went out, I felt a void. Judy was and is a very strong--she has a very strong persona. You know when Judy's there. [laughter] In the movement, even at that time, people either adored her or were critical of her.

Jacobson

What were they critical of?

McQuade

I was going to say this happens to divas in other places. Judy is a diva. Some people felt--talked to me, because I was very close to Judy and I didn't feel the way some of these people felt, because I think you have to have the kind of drive that she has to take on what she took on. She has immense energy, she has a good memory for people, she remembers people, and she just did a lot. I think I consider her as the mother of the modern disabilities rights movement. I don't feel any qualms about saying that.

Judy would go to Australia. Judy would go here. I mean, I think some people felt that she--it was too much. This is going to sound like, "Marcia, Marcia, Marcia" on the Brady Bunch, too much "Judy, Judy," but people identified DIA with Judy. DIA in many ways was Judy, at a point in its history. The subsequent leaders in DIA didn't have that kind of baggage with them. I was the president of DIA. As I said, talk with Pat and Denise, because I can't remember who won the election the first time after Judy left. But there was a big void for us, because first of all, her job allowed her--because she finished at three o'clock, her job allowed her to attend loads of meetings that the rest of

---

us couldn't. Either we were in school full-time or we were working full-time, and we couldn't do it. It was fortunate, in a way, that she was a teacher.

Jacobson

What kind of meetings?

McQuade

Oh, God. It's really hard for me to remember. She would go to meetings; it might be with other disability organizations. Say with the Wolf--with the conference at that school, Judy was involved with the meetings planning for that conference. She attended planning meetings.

Jacobson

Is that the Policy in Action conference?

McQuade

Is that the policy in--?

Jacobson

Action.

McQuade

I think that might have been that. I think that's what it was. That's really interesting that you remember that. She did that. She was the spokesperson. She was able to attend the meetings, so Judy was the one that everybody met and knew. The rest of us, we would be at meetings--as God is my judge, I would never have gone out to speak any place, only when she couldn't make something. I used to say to her, "How come I get to go to Newark, and you're going to Australia?" as a joke. But it's like she also, without us thinking about it, she mentored you in way, because I had to go on Malachi McCourt's radio show to promote the conference. I almost choked to death I was so nervous. [laughter] The first time I spoke to a parent group, I was so nervous I felt myself choking. I said, "Could somebody get me water?" Parents are running all over. We're at a library. I thought, "I'm going to just die in front of these people," because my throat started to constrict. I just was like a nervous wreck. [telephone rings] Sorry.

Jacobson

We just took a break.

McQuade

While we were on break, something came to me about your husband Neil, that I remembered. We went out to Hofstra [University]. I took Judy. Judy was then either able to be lifted or somehow transferred with some help into my little car. We were running out to Hofstra and we were there for, I think, the day. We must have been talking to disabled students on the campus. I believe we were talking to them, encouraging them to organize or to get involved with DIA, something like that. I think one of the things I was saying to you is that what's so frustrating is that you remember doing something, but you don't remember why you were doing it.[laughter] I remember Neil; that Neil always pushed himself backwards with one foot.

Jacobson

Neil--

McQuade

Jacobson, your husband. I was saying to you as we were talking before. I know I met Neil out there, and I know we were going out there one Saturday to give a talk. Judy was going to be--I was driving. I was coming with her, but thank God I didn't have to talk. Judy was giving a talk.

Jacobson

Did you go with an attendant?

---

McQuade

This is the funny part. I can't remember who was with us. I can't remember whether Larry came with us--my husband, Larry Weissberger--or somebody helped her to get in the car, and when we got there somebody was going to help her out. I can't remember that. I think there was somebody else with us. I don't remember if it was Susan Marcus. I can't remember that part of it. But I know we were out in Hofstra to organize people and to talk about disability rights. Do you remember Frieda Tankus?

Jacobson

Yes.

McQuade

She was one of the sweetest, just kindest, most loving human being. Do you remember her brother Morty and everything?

Jacobson

Yes.

McQuade

She was a student at NYU. We were at NYU one time; we were doing something. I know that Judy was there and Frieda. But this is the stuff--we were always going someplace, and whether it was we were talking with students or we were helping meetings. Somebody could get us a location, and we were meeting at that location because somebody had a connection. I always remember us running around here and there.

When we turned off the tape, I was talking more about Judy and when she went out to California. She was so, so vital to the functioning of DIA. It wasn't that Judy did everything alone. That certainly wasn't the case. But when she was going away, or going to meetings where she was going to be away for a time, there was in some ways a void. Things still went on. We still held meetings and all, but it was--you felt--I felt--I can't speak for every single person, but I felt kind of a loss, if not direction, not as much of a--I'm trying to think of the right word--a boat without its rudder I guess is the best way. She was such a strong leader. We had different roles, and we continued. It wasn't like she was totally gone and therefore we knew we had to establish a new president. There was a void. That's really the right way to say it. We were still working on things, but she would come back and we would catch her up, and she would tell us some of the things that were going on.

That's another thing too--DIA, I think it was after Judy;s time in DIA, in terms of being an officer and everything--we worked on the Flynn, Bloom, Koppell Bill which was New York state's civil rights law for people with disabilities. That was the first human rights law in the state. I know we worked on the local city human rights law, to have a city human rights law. That's been amended at different times. But I think the state one came first and then the city one.

Jacobson

What year?

McQuade

State one, I do remember. I think that was 1975. The city code, in terms of that--I may be saying it wrong--I don't remember exactly when we did it, because we did spend a lot of time working on the state human rights law. We were probably working on it like--it doesn't always pass in one session. Probably '74, '73, '74, and then '74 or '75, something like that. But I'm pretty sure it went into effect in '75. But the thing I was saying also about in terms of Judy's presence, no one since that time--Frieda Zames was president for quite a while in DIA; a lot of times, the person who was the president of

---

the organization, that's who people identify the organization with--but no one has ever surpassed the kind of persona that she represented in terms of DIA. Judy really is a very unique person.

What I was saying to you about some people, I think for some individuals they felt bulldozed by her. I didn't feel that. People knew we were close, and people would talk to me. I didn't feel like there wasn't a free exchange of ideas. There were disagreements at times on different things. I don't remember what people would--

Judy and I, our disagreement was when we were first working together. Judy felt disabled people always got form letters, and she didn't want anybody to get a form letter. I was the secretary. I had to do all the letters, and I knew we had sacks of mail! I remember, this was one thing, it's kind of an amusing anecdote. I said, "Judy, when I come and work, either I come at night or I come on the weekends." She would dictate, and I would take the dictation, type the letters. "Maybe we're getting ten letters done." I said, "We can't respond to all these people doing it this way. There's just too much mail." She said, "I don't want to do that to them." So we would continue on. I guarantee you there is mail--I don't know where it is--that has never been answered back from like 1970 and '71, because just hundreds and hundreds of people wrote letters to her.

Jacobson

To where?

McQuade

To 175 Willoughby Street.

Jacobson

From where?

McQuade

Some letters were from official people and we were responding. It could be on legislation. It could be about a meeting. Some were just individuals telling her about a problem or a concern. But that was one of the things where we--and I still believe she was wrong on this one--I said, "Better to get some kind of a response and acknowledge that there's so many letters that we just can't answer each one individually, than none."

Jacobson

Were they local or state?

McQuade

Some were local. Some of them I don't think we ever even got through all to look at where they came from. As I said, some would be from officials, some would be from people from other organizations, some were individuals writing about a concern or whatever. But that was one thing I remember. She wanted so much to respond personally to everyone.

The thing I was going to say is that no group of people can work together where they agree on every strategy, where they agree on every emphasis that eventually is worked out. But I also think for some individuals--I think sometimes some of it might be a little bit of jealousy. I mean, you know Judy. She is a force, sort of like that movie, "A Force of Nature." [laughter] She has such capacity for--some of it is ridiculous. I got stuck staying over with her once. She told me--this is another funny story--she says, "Come over after work. We'll eat, and we'll do some more letters." So I come over and I said, "Judy--"

---

---

McQuade

I started to tell one of my Judy Heumann stories. This is probably either late '70 or early '71. I was working as a legal secretary. I come home from work in Manhattan, come to Willoughby Street. I said, "Judy, I can't always find parking and curb cuts are not that plentiful and I need to be on your block." She says, "Don't worry about it. Just pull into an empty space in the parking lot." This is designated parking for the residents of the building. I said, "Judy, are you sure somebody's not going to be upset?" She said, "Don't worry about it. They'll ring the bell, and you'll just come down and move the car." So we're working. It's like ten thirty, eleven o'clock at night. I said, "Judy, I have to go home. I'm exhausted," so I go downstairs, somebody's blocked the car. An irate person whose space I have taken.

So now I come back up, and I say, "Judy," I said, "I can't leave. I have to go to work in the morning. I don't even have clothing." I think she lent me a nightgown or something. Judy's smaller than I am, so she says, "I'll lend you a dress." I said, "Judy, I don't know that I'm going to fit into your dresses." So here we are. I take a shower. I borrow a nightgown. She's getting calls at two o'clock in the morning, and she's talking to people. I said, "Judy, I'm telling you, I would hate to be your roommate. Who called?" When somebody calls me at two o'clock in the morning, I think somebody's died. I don't view this as this is a time to chat with your friends. [laughter] At any rate, there are constantly these calls. I get up in the morning. I have to borrow her dress. Thank God she had one dress that fit me, and I have to go to work. I'm just praying to God that my car is not going to have like window broken because I've taken this person's space. That was Judy, "Don't worry." Another Judy story--

Jacobson

Let me add a little bit about that. Willoughby Street is right across from LIU.

McQuade

Right, right.

Jacobson

--and it's a rough neighborhood.

McQuade

Right, I can't speak for today, but it was--

Jacobson

It was not like an upper middle-class neighborhood.

McQuade

No, no. The building I think probably had some people from the University in it. But yes. When I think of Judy, I always think, her poor parents. Judy met everyone in the world, and coming over, Mr and Mrs Heumann's house was like the waystation: "Oh, you could stay with my parents." One time, this is post-DIA, I was working at our center. We changed our name. We were Brooklyn Center for Independence of the Disabled.

Judy says, "Listen, we have these German visitors coming over." They were Green Party people and they were involved in disability rights in Germany. "Could you take them around?" I said, "I guess. I don't know exactly what they would want to do."

There was one person who used a wheelchair and other people who are ambulatory. Where did they want to go? They want to see the Indian Museum. The Indian Museum now is down where I work. It's in the Smithsonian. It used to be the Customs House. It's

---

at Bowling Green. Then, it was in Harlem. Europeans are very interested in Native Americans. I have never been in Harlem. I had no real need to go to Harlem. Many of the neighborhoods in the city I have not been into. I have to figure out how to get there. They're like sitting on each other's laps. We've got my wheelchair, this wheelchair. I'm thinking, I don't even know if we can get two wheelchairs in the car. We go to Harlem. We get out.

There's a person that--do you know the expression, "the person had a face that would stop an eight day clock?" This is an angry looking person coming along, and I'm thinking--because we had to ask a question where's the entrance or find it exactly. Who do these Germans go up to but the last person in the world any native New Yorker would go to ask for anything. And the person was very nice. I'm thinking, oh my God, this is probably some kind of a drug addict or a person who's going to see all these white people and just be furious that what are we doing up here. We go to the museum; that all works out fine.

Then they want to go and eat, so I take them to a Cuban restaurant, Victor's on 52nd Street, because I figure I know it's got a flat entrance. I told them the bathrooms are not accessible, but it's a flat entrance, and I figure Germans don't want to eat German food if they come to the United States, so let's give them something different. We had a nice meal and everything and now we're going home, two wheelchairs in the car. We're driving back to Mr. and Mrs. Heumann's. When we get home, I forget where the hell we put my wheelchair. Maybe my wheelchair was in the backseat, and they sort of sat around it. I think that's how they did it. And the other wheelchair was in the trunk. We get to Judy's parents' block, all the houses look very similar, and I couldn't quite remember which is Mrs Heumann's. [laughter]

This is like ten o'clock at night. We rang one bell. They said, "No, the Heumanns are over there." So we find Mrs Heumann. The way they closed the trunk, it broke the lock, so now we're there, this German person's wheelchair is locked in my trunk. Luckily mine wasn't, because this really would have been terrible. So here I am. I'm living by myself. I said, "Look, I'll go home, I'll call a locksmith tomorrow." Eighty-nine dollars later--this is a Sunday trying to get a locksmith--eighty-nine dollars later, I've got the wheelchair out of the trunk. He had to break the lock, put a new lock on it. Whatever. It was just so expensive. I called the guy and said, "Look, the person who this chair belongs to has to fly out early tomorrow morning, can you please come today?" So he came, but it was expensive. So then I drive over to Mrs. Heumann's, drop off the wheelchair. The next time I spoke to Judy I said, "Judy, you owe me big-time. This was eighty-nine dollars to get this damn wheelchair out of the trunk."

Jacobson

Where was Judy?

McQuade

I believe in Washington or California. She just called me up. I mean, it's a typical Judy story. I said, "If I were your parents I would kill you." "All these Latvians are coming in from the weekend, Ma. Could you put them up?" I said to Judy, "How do your parents stand this? You're not even there. They don't know these people. You have all these people traipsing through your home. They're doing research or visiting." I said, "Listen, the next time you have a group of people, Estonians coming in, don't call me. I don't want to go through this again." They were very nice, but it was like, "Oh my God, I can't believe it, that the trunk is jammed." Unbelievable [laughter].

---

At any rate, going back to the days with DIA, we had subcommittees that would meet, and more than anything else, I think we were supporting pieces of legislation in our state or attending meetings to deal with specific issues, or make sure other people in the community were aware of the issues, and we agreed to function on them. Ronni Stier was doing some kind of research on transportation, and we used to go to her house.

Jacobson

She was on the board.

McQuade

Yes, she was. We used to meet at her house a lot, because she couldn't get around that easily, and so we met at her house. I met Larry, my husband, at her house. It was really funny. Of course, he was married to somebody else then.

Jacobson

What year?

McQuade

That was probably '97--it was before we incorporated. We may have had two vice presidents. You'll have to ask Bobbi Linn. I kind of remember Bobbi Linn being a vice president also. I think Larry was vice president of communications or something.

Jacobson

I do remember that, but I remember you and Angela as vice presidents.

McQuade

See, Angela might have been--as I said, I think I was president once, but it may have been that she was a vice president. I have this recollection sort of of Pat [Figueroa] being vice president and me being president once. Then maybe he became president, or else he was president and I was vice president. I don't remember. I just know that both of us said whoever was elected we would support. In other words, if he was elected I would support him, and if I was elected he would me. He came up with that plan of borough DIAs, to deal with the fact that there were transportation problems.

Diversity in DIA, conflicts, and romantic involvements

Jacobson

One of the things I wanted to ask was how diverse of a group was DIA?

McQuade

I would say its leadership was largely white, middle-class, what would be considered middle middle class, or even, I don't think lower middle-class today. But women. That was the unique thing, I think, about the movement also. Women were in positions of authority. Women were the dominant group. When we talk about disability, there were Hispanics. I don't remember very many black women, except Angela Thompson. There were people who were--Pat Figueroa. I think of Pat as Hispanic, Puerto Rican. I identify him more with being Hispanic. Fred Francis. Jimmy Lynch, I believe he was on the board at one time. Pat and Fred Francis. There were people who sort of came for a time and left. But largely--and I would say--a lot of Jewish women. Bobbi was Jewish. Judy was Jewish. Susan Marcus was Jewish. Larry was a man on the board, only nondisabled man, Jewish.

There were men involved, but the men who were leaders in DIA would have been Pat, and Fred Francis, Jimmy Lynch. There were some other fellows that sort of came and went.

---

This you may have to take off the tape, I don't know, because I don't want to embarrass anybody. But also some of the conflicts that happened as I remember it, were the guys who Judy got involved with romantically. As the romance went south, the disagreements got stronger I think. I really didn't date anybody; I wasn't romantically involved with anybody in DIA. Judy and I, we used to talk sometimes, because sometimes there would be like--you would be at a meeting, and there would be a discussion and people would get very heated. You could get heated without any romance, but if it was a male and Judy and them disagreeing, we would talk sometimes. Judy may have a very different recollection of this. I would say to Judy, "I think part of the problem here is that the two of you are dating. Not that you can't date people that you work closely with, but I think sometimes that that gets in the way with these guys." I think Judy could do it and not personalize it, but I think it was harder for the men not to let their personal feelings sometimes color. It had a negative impact, sometimes. I don't mean it destroyed anything, but it would sometimes color how the disagreements went on things.

That's my recollection, because I remember we would talk sometimes. "What's going on?" It would seem to me that people would sometimes allow their personal feelings, pro or con Judy, to affect some of their--

Jacobson

Do you remember any of those types of conflicts? What were they about?

McQuade

I don't know if it was earth shattering things, but it might have even been petty things, and the person would get annoyed over something. I don't know that Judy would remember. Ask Bobbi what she remembers of some of this, because I just remembered. I don't mean that she was dating every man in the movement. She and Pat Figueroa disagreed at times, and they did not date. But I know there were some guys that she was romantically involved with for a period of time. Probably a short period of time. Sometimes, you would see like they would disagree on some things and I said to her that I thought the disagreement was simply because they were not dating anymore or whatever. That I kind of remember. This was a few men very early on in the development of DIA. This was noteworthy because Judy was able to separate personal feelings from philosophical, political, or strategic planning concerns that were debated in DIA and some of the men who became romantically involved with Judy. As I said, this may be something that should get heard twenty years from now.

The difficulty also is that I think I know somebody that she was dating, but there was some other people who--I don't remember their names that there was somewhat of a romance for a short period of time. But, I think with most things, it would be more along the lines of discussions or strategies, or how do we approach an issue.

A march to the United Nations on behalf of civil rights for people with disabilities

McQuade

I'll tell you something else that we did when Judy was still there. We had a march to the UN [United Nations]. This was probably '72. It was the summertime. I remember Larry came, and his wife, and I think one or two children in a stroller. We were marching to the UN, and we were going to present a declaration of civil rights for all people with

---

disabilities in our country, in the world. We wanted to present something. It was either a declaration of civil rights or a request that they declare that persons with disabilities are equal human beings or something. It had to be the spring or the very early part going into the summer. We were marching over there. One person who is deceased behaved like an idiot. I don't know if you remember him. This will get edited? All right, Julie Shaw. He was much older than the rest of us. He worked for the city. Eventually, he became a director of the Mayor's Office for People with Disabilities, but he was involved in democratic politics. We're walking along--

Jacobson

What was his--?

McQuade

People who were activists and all of that. I think Pat knew him pretty well.

Jacobson

What type of disability?

McQuade

I think he was post-polio. You're asking about disabilities. Pat, I think, had spina bifida. I think, I'm not one hundred percent sure. Denise Figueroa, post-polio. Denise and Pat met at Brooklyn College. She was like a year or a couple of years behind him, and she roomed with Judy, because Judy always had roommates. I was going to say extra space. At any rate, Pat was there. I think Fred Francis; I'm not one hundred percent sure. I was there. I'm assuming Bobbi Linn was there. There was just a crowd of people. There had to be a couple hundred of us.

Julie--the police are following along--starts yelling at the police about them being pigs. It's like, this is is not a rally against the police. The police are walking along. They're not stopping us or anything else. I'm thinking, this is really stupid. First of all, you might need police protection at a certain point. Why is this nitwit--I didn't know him that well. It was like I'm thinking, what is he yelling at the police for? It's not like the police have beaten us senseless, and we're protesting the police.

We're marching along and the UN guards--we stopped at one gate, and we were sent by the guard to this other gate. We get to this gate, and you know it's hot, and we're all walking along and everything. We get to this other gate; the guard won't let us in. A pushing match--I don't know if Judy will remember this--a pushing match started between the guards and the men, like Pat Figueroa and some of the other men, because we had been told this is where we're supposed to come in. A pushing match starts.

Somehow the crowd of people that were there--I remember getting my hands caught against my wheel, my rim, so I couldn't move forward; I couldn't move backwards. I'm thinking, we're going to get our heads beaten in. These guys are not going to care. They are UN police. They are not going to care if they hit us. I'm trying to get Judy's attention, because it's very easy for things to get out of control. I'm yelling to Judy, "Judy, you got to get control. Things are getting out of hand." A captain of the guard came out. I think he was a captain; maybe he was a lieutenant. I don't know military things. I started yelling to him, "Look, we were told by the guard at the other gate to come here. That's why we're here. We were told to come here." Then Judy was talking with him.

My car had broken down that day, and a guy from my neighborhood, Billy Quinn, had given me a lift. All of a sudden I heard this voice behind me saying "You know,

---

McQuade, you always have your mouth open." This was the neighbor, Billy, speaking. I looked and I said, "Let's get the hell out of here before we're beaten up, because--" I'm saying to Judy, "You know there are people here with baby carriages and children." Once you're crowding in on each other--we just left. I don't know what happened after it. I said, "Nope, this is where I'm getting off." It's like falling apart. Maybe it didn't completely fall apart after I left, but I thought, this is it. This is not for me. To be beaten up for a real reason, that I could understand. But it was so scary for that moment.

Usually police don't hit people with disabilities that are obviously disabled. They usually don't. In my experience I have not--I've had some shoving matches, but I haven't ever thought they were going to hit me with their club. But this one, with the U.N. police, it's their property. They looked so angry, I thought, oh my God, we're going to really get hurt. And for what? It was like, what a moment! It would be interesting, if you interview Judy or Pat, if any of them remember this, because I'm thinking to myself, what is happening? It was the guard's fault at the first gate we went to to send us to this gate, because we thought we were perfectly right to be at this gate and everything. That was another thing we were doing.

DIA strategies, funding

Jacobson

I want to ask, was there a strategy in DIA or did things just come up and you said, "Okay, we're going to decide to--?"

McQuade

I think there was a philosophy and a mission. I think strategies were for specific kinds of events or legislation. I don't think there was like a five-year plan at all. Not that I remember. I think at times, I think Pat tried--and I think it was after Judy left. I think he tried to deal with the transportation problems by having borough meetings. There used to be complaints also from some of the members about why does everything have to be centered in Brooklyn. I think we were trying to respond to that, and he came up with that plan. I forget if we ever came up with an overall plan for the year.

My sense, and this is a sense, it's not like I have a complete memory of this, was that we were more reactive to issues. Yes, we had a policy that we would picket the telethon. I think there was also picketing of the cerebral palsy telethon in the winter months. At least we picketed the telethon that Jerry Lewis had for muscular distrophy once, that I remember. That was always held on Labor Day, and I remember cutting my Labor Day weekend short to come in and picket the telethon.

But our strategies, as I remember it, had really more to do with specific goals that we were trying to achieve in the sense of--for example, say we were trying to get more curb cuts, and I know we worked on that. If we could find some of these old newsletters, that would sort of help us to reconstruct some of these things. I remember we had, for example, if we had meetings, it wasn't like it was total chaos. We would have a meeting, we would go over what are we currently working on on legislation, or anything new that's come up that we have to deal with, plans for the President's Committee on Employment for People with Disabilities. If there was a conference that either we wanted to participate in or--usually, people would ask us to cosponsor something

---

sometimes. It would be things like that and getting the newsletter out, things to put in the newsletter. There would be key things that we agreed we wanted to work on, and then there would be pop-up issues, and you'd be responding to something.

Jacobson

How did you get money to go--?

McQuade

We paid for ourselves; we paid for ourselves. DIA--I think there were dues after a while. I think we had dues. But anything we went to--Judy, if she was asked to go someplace, she would probably get the expenses from an organization. If it was an organization that really had money to pay for her--especially like going to Australia and all of that--she would get that paid for, but we were not a wealthy organization. I believe we had dues sometimes, and maybe people made donations, but I remember us basically paying--having the bus fare, renting the room. You would save for it, and you would do that.

People with spinal cord injuries in DIA, people with other disabilities

Jacobson

The other thing that I want to bring up was in California they got started because disabled people, mostly men, were living on campus. Many of them had spinal cord injuries. Were there people with spinal cord injuries ever active in DIA?

McQuade

I think there must have been. I'm pretty sure there was. The disabilities that I remember specifically were cerebral palsy, muscular dystrophy, like Jimmy Lynch. I don't know what Ronni's disability was. It was some kind of a unique thing. I just don't remember. I remember being--maybe it was one of the dystrophies or MS [multiple sclerosis], something like that. Frieda Tankus had--

Jacobson

I think it was muscular dystrophy. A form of it.

McQuade

Muscular dystrophy, a form of it. There were people who were amputees. Like Fred Francis was a double amputee, I think, below the knee. Some MS, some people had MS. Polio, there were a lot of us with polio; there really were.

Jacobson

Do you have a sense of why the make-up was the way it was? Why there weren't that many spinal cord injured people?

McQuade

I think the vast majority of us in the organization at the very beginning were people who had been disabled--and this isn't all, because Fred Francis was newly disabled--who had been disabled in childhood.

---

McQuade

We were changing the tape as I was saying to you, it's a question I never ever thought about. It's very interesting, and one of the things that I started thinking about as you were asking that question and I was trying to come up a response, is I think in many cases, at least at that point, a lot of people with spinal cord injury, it's usually in adulthood or young adulthood. Depending on where you are, the ones who are veterans

---

belong to veterans' organizations. One of the things that happened, especially during the Vietnam era, there were people--his last name is Muller. I'm blanking on his first name. He was a marine in Vietnam. He had a spinal cord injury.

Jacobson

Bob Muller.

McQuade

Bobby Muller, okay. I remember he got in touch with Judy. I believe probably at that point he was anti the war. I remember he was over at Judy's house, and Mr. Heumann, Judy's dad, had been a marine in the Second World War at Guadalcanal, and they were sort of swapping stories. Mr. Heumann was showing him some of the pictures from the Second World War. Again, how people found out about us, maybe they read something in an article in a magazine, or in a newspaper, or someone mentioned her. He came over, and he was interested in disability rights, not just veterans' rights. I think that's part of the reason a lot of persons who were spinal cord injured, they were veterans, at least at that time.

Later on--this also happened--usually, it's young men who were in diving accidents, swimming accidents. Depending upon the socio-economic group, like Goldwater, lots of black and Hispanic young men, who have been victims of gunshot wounds. Whether they were perpetrators of crimes and were shot, or they were shot by somebody, you can ask Marilyn [Saviola], depending on the social strata. It could have been through gunshots. Car accidents are big, a lot of male amputees, motorcycle accidents.

For women too, in our area, a lot of people were coming through IRM, Institute of Rehabilitation Medicine, the Rusk Institute. I think, too, they identified more with each other as people with spinal cords injury, and they didn't identify really with other people with disabilities. I think probably your experience, my experience in the hospital and everything, post-polio, cerebral palsy, other kinds of physical disabilities, your experiences were with people with more than one type of disability, mostly physical, of course. A lot of polio, but not just polio.

Jacobson

You went to the clinic and school--

McQuade

It could be kids with clubbed feet. Right, school definitely. School was congenital amputation, arthritis. That was the other thing: juvenile arthritis, different kinds of physical disabilities. I think for the spinal cord injured, you were usually a teenager or older. You tended to identify with the people you were rehabbed with, but you weren't identifying with a larger world of disabled.

I think that's the other thing, too, when you're newly disabled, you don't think of yourself as "I'm a person with a disability." You probably are very much hoping to walk again. You're in denial what's really going to happen. In your own head, you want to go back to the world that you came from. You don't want to associate with the crips, to use the old term. You really are aghast that you're in the wheelchair, and people usually come to terms with that, but they still may not want to identify with other people with disabilities. Especially disabilities that are so foreign to them. They're not going to identify with a person who's blind, not initially.

Sometimes, depending upon your life experience, you may be the only para on your block, so to speak, and that's it. People get to know you. They realize, well, this is Joe,

---

and now he's a para. Hopefully you come to terms and go on with your life, but some people don't. You get a lot of alcoholism and drug use and everything. But I think that's the thing. There were some, but largely it was people who had been disabled longer, except for a few like Fred Francis, and people who had encountered other disabled people in other settings. That's my recollection of this. It's interesting though.

DIA during Judy Heumann's absence, working at Independent Living for the Handicapped

Jacobson

What do you remember of the time when Judy left to go to California? Do you remember talking about her interests in--

McQuade

I'll just say how I think of it at this moment. My mother has Alzheimer's. It's so scary to not be able to remember more of this.

Jacobson

Well, it was a long time ago.

McQuade

I know. I have snatches. I know we did talk about it. I know that we must have talked about that we would miss each other. This is the other thing--we became friends, so you were talking about men; you were talking about religion sometimes; you were talking about your upbringing. You became friends, so everything wasn't the movement all the time. I think probably knowing that I felt a little scared, like were we going to be able to go on. I probably talked about that. Knowing Judy she probably was like, "Sure, you'll go on." You know how Judy is. She would buck you up.

Jacobson

Were you--?

McQuade

I also think Judy had decided to go back to school. That was the other thing. She was going to work on her master's degree. I think that was the other part of it in going out there. She had decided that she wanted to get a master's degree. I don't remember if it was in--

Jacobson

It was public--

McQuade

--administration. Yes, I was going to say some kind of administration, but it was public administration, because she felt that she could do more with that kind of a background. I know she didn't think everything was just going to fall apart in terms of DIA and all. That was the other piece, that she didn't want to teach any longer, and she felt that if she had a degree in public administration, she could do more things in terms of the movement. That's the best I can put together.

Jacobson

What happened to DIA?

McQuade

I know we formed a DIA in the Bronx. That never flourished. We formed a DIA in Manhattan. What I remember--and I think was when I was president--what I remember was constantly hearing about the elitist people in Brooklyn from the Manhattan group,

---

and them feeling that "Why do meetings have to be over there?" I spent time reaching out to the Manhattan people to say, "We're all part of the same organization."

Jacobson

Who was in the Manhattan group?

McQuade

I believe Phyllis Rubenfeld, Shirley Morganstein, Frieda Zames, as far as I remember. Those are the people that stand out most. There were other people, but it's like, I don't remember. Those were people that I remember the most out of that. There were people who would come to meetings--this is another digression--but this will give you an example of how things really were, because a lot of time people came, and you wouldn't know them all. They wouldn't be on the board, but they would be members. Susan Fonfa, she's now the executive director of Fed Cap.

Jacobson

Of what?

McQuade

Fed Cap, it's a rehabilitation. She was the director who hired me at the center. It had another name. They shortened it to Fed Cap. What was it? Federation of the Handicapped. You understand why it's now Fed Cap: Federation of the Handicapped. You would remember that. They had decent rehabilitation programs, because they went in for--one of the things that they tried for was homebound typing, where if you wanted to earn a real living, you actually could have. This is one of those disappointing moments in your life. When I went to work for the center, I was like the staff person. It was Sue and me, and we had a part-time secretary. We had Edmeé Rodriguez, who was our intern and board member.

Jacobson

This is the Center for Independent Living?

McQuade

Right, we were called Independent Living for that Handicapped, that was the name.

Jacobson

In Brooklyn?

McQuade

In Brooklyn, right. That had gotten one of the contracts from Office of Vocational Rehabilitation. This was not the Part B money. VESID [Vocational and Educational Service for Individuals with Disabilities] was OVR then, Office of Vocational Rehabilitation. This is '79. I came to work there in '79, but the processing of the contracts, or the work to get the contracts probably started, was probably all '79. So at any rate, they were one of the places funded. CIDNY was funded. The Center for Independence of the Disabled in New York, was really the idea--I think it was the idea--what is that woman's name? I think Anna Fay was one of the people. It was the National Paraplegic Foundation. Even though there was some post-polios involved in it, like Carr Massi, Anna Fay--I forget if Julia Schecter was involved, the late Julia Schecter, was involved in that, too. Basically, people knew that there was a real need for attendants for independent--let me not be prejudicial on this one. You could be independent but not want to spend a lot of time hiring, training, finding your own PCA. You may choose to be with a home care agency that will do all that for you and all that you would have to do is--through your Medicaid, they'll provide it. Then there were people like Marilyn Saviola who have a lot of resources and prefer to find, train, hire, fire their own personal care attendants. They have the resources, and they have the resources in the sense of connections; they know where to go. There were a group of people like that.

---

So this was a pilot project. Center for Independence of the Disabled in Manhattan, really was a home care referral program. It wasn't really an Independent Living Center, starting out, as I recollect it. National Paraplegic Foundation, people worked on getting a grant, and the grant was to establish this attendant program, attendant referral. They would screen; they would get a list of people; you would hire, train, pay, hire, whatever. Or maybe they dealt with the fiscal part of it, but I'm not sure. Eventually what happened is there were some scandals with the home care program that the city was running. Also, the unions were trying to organize the workers. So, what they decided to do--the city, not to have them working directly for them--was to offer contracts to non-profit agencies to run home care programs.

Rivalry between Brooklyn and Manhattan, leaving DIA

McQuade

Where the hell was I? What was the last thing I was talking about? I'm losing my train of thought. We weren't back to why there weren't so many paraplegics in DIA. Then the next thing, you asked me a question about when Judy left.

Jacobson

DIA.

McQuade

DIA. Right, when Judy left, and we had the borough DIAs. I don't know if there was a Staten Island DIA that ever got off the ground, or a Queens DIA. But I remember the Bronx had one, Manhattan had one, and we had one in Brooklyn. All right. One of the things that had happened was there was this jealousy. I don't know any other way to explain it. Or this sense of paranoia about Brooklyn as opposed to Manhattan. My sense is it has to do with the personality of some of the people rather than any basis in reality. That would be my take on it. I spent time meeting, going over, and making sure everybody felt decisions were not being made just unilaterally. I think we started to hold some of the meetings in Manhattan. Then more--

Jacobson

At the Institute for Rehabilitation Medicine at New York City Medical Center?

McQuade

Right, right. Then Manhattan was where we met. The feeling was that most people, if they could travel on their own, it didn't matter where you went, and if you couldn't travel on your own, Manhattan was an easier location to get to. People had connections to IRM.

Jacobson

I just want to interject that from what I remember growing up in New York in the Bronx, there was always some type of rivalry that was not related to the disability movement. Between the residents of the borough, there was this rivalry.

McQuade

I think there was always like when you were going to Manhattan or going into the city, it was sort of like the boroughs did not identify with Manhattan. That was true in Brooklyn. But I think there was like--

Jacobson

And the Bronx, nobody wanted to go to the Bronx.

---

McQuade

Right, right, that's true. The thing I was going to say though was that we then started meeting in Manhattan. There were also, on occasion, meetings I think at 175 Willoughby Street. Those are the two places I remember where we met the most. Newer people came in. From Manhattan, Kip Watson came in. I'm blanking on his wife's name. They weren't married then.

Jacobson

Emily.

McQuade

Emily. Emily came in. So there was new membership that came in. He had a hearing impairment, and I think was post-polio. Emily, I think, was cerebral palsy. Phyllis, post-polio. Shirley Morganstein, post-polio. Carr Massi, I remember her with National Paraplegic Foundation, and Anna Fay and all of that. This is one of the things that happened. There was another organization that was formed, and I remember being a part of that too. I forget what the heck we called it, but I think they were trying to have more of a coalition where other people in groups could come in.

Jacobson

Was it [inaudible]?

McQuade

No, that was national. That was an attempt--they did, they did form the American Coalition of Citizens with Disabilities [ACCD]. That was national, and that was probably--

Jacobson

But I think it was Policy in Action.

McQuade

Maybe, I'm not sure. Maybe it was. I think I was always taking minutes of things, as I remember. But I just remembered we were working on some things. I know when I left DIA, I left to go back to school. I'm going to be very candid. School gave me a pleasant way of leaving without questions being asked as to why I was leaving. I knew you couldn't do that and do DIA, but in reality, I found it totally draining.

The meetings, there were always conflicts. I mean, I felt like after a while we just spent hours and hours and hours debating things. We make an agreement, we come to terms, and then--not that you can't do it according to Robert's Rules [of Order], and I don't know how well we were following Robert's Rules, but we had these endless meetings. We would come to an agreement on something, and then the next meeting we would be back at it again. I just felt like I don't want to spend my life spinning my wheels, pardon the expression [chuckle].

Sometimes, there are negative forces at work. I don't even know if people realize what negative forces they are. There was too much turmoil. Not that the organization was falling apart; it wasn't. But for me, I don't like constantly rehashing the same things. You make a decision, maybe once you could reconsider something, but it just seemed we kept going back to things, and things just wouldn't get laid to rest, and you wouldn't move forward on it. It really, for me, it was the time to move on.

---

Strategizing for accessible mass transit, participating in 504 demonstrations to force Secretary Califano to promulgate the regulations

McQuade

The organization obviously went on. The organization brought--along with Eastern Paralyzed Veterans Association, but EPVA's lawsuit was the one that won on the state law--they brought the lawsuit against the MTA. They did it under 504--the DOT [Department of Transportation] regs.

There was also a big demonstration in the end of the summer of '78 for a thing called Transbus, which was a low floor bus. Now, low floor buses have been bought by the Transit authorities, started to be used in Munich. What we wanted, way back when, and they said it couldn't be done, was that Ford, General Motors, all these places--not so much Ford, General Motors--they didn't want to retool, bottom line. Then there were debates about later on when we were--there was a transportation disabled committee formed out of the--the lawsuit that was won in '83. There was a coalition called Mobility Through Access, and individuals and DIA and EPVA and any other groups that wanted to push for accessible mass transit, we worked together.

There, there was a strategy, and we basically worked to lobby the state legislature to create an accessible transportation system. What happened was EPVA won the lawsuit under the state building code, that they had to make subways accessible when they renovated them. Immediately the MTA went to the state legislature to get exempted from that, and we all opposed it. They combined DIA's lawsuit with EPVA's lawsuit.

Jacobson

What year was this? I believe 1988 was the year the lawsuit was won.

McQuade

Jim Weissman would have to answer this, or Denise Figueroa, because part of the time she was working for the Mayor's Office for People with Disabilities, and part of the time she would have been working for EPVA. As far as I remember, that probably was from--let me just backtrack a little bit. From the time I started working for the center in '79, transportation was one of the big, big issues in the city. It was a 504 committee that came up with a 504 plan, because 504 required that buses and things--if you purchased new it had to be accessible.

Jacobson

Were you involved in the 504?

McQuade

No, I wasn't. We supported it, but there were other people on the committee that had been working on it, like some people from our board. Muriel Zardowski was on that; she was on our board. She had MD [musclar dystrophy], I believe, and her husband Vinny Zardowski.

Jacobson

What board?

McQuade

The center's board. I worked for the independent living center from the fall of '79 until December 14, 1992. [Editor's note: In the eighties, the name was changed to Brooklyn Center for Independence of the Disabled.]

Jacobson

But that 504 demonstrations--

---

McQuade

Okay, the 504 demonstrations--we're talking about two different things. The demonstrations in '77, to force Secretary [Joseph A.] Califano to implement, to promulgate the regulations?

Jacobson

Yes.

McQuade

I was in college. I wasn't sitting-in. There were people who were sitting-in. They didn't sit-in for a month like you did out at Berkeley. I went and demonstrated outside. Those people who could demonstrate outside, demonstrated outside, and then there were the people who agreed to sit-in. I think Pat Figueroa and some other people--I don't know if Denise sat-in--but there were people who were sitting in on that. It was a coordinated national effort, I guess, but I don't know if Berkeley took the title for the longest sit-in. A guy who came to work for us at the center afterwards, Ben Welton--he became a Lubavitcher.

Jacobson

A what?

McQuade

One of the Hasidic sects.

Jacobson

Lubavitcher.

McQuade

Lubavitcher. They support Israel, and they believe--they're like Chabad house.

Jacobson

Okay.

McQuade

So he came to work for us, but he had been in that sit-in. He knew Judy Heumann and all of that. He had been in that sit-in out in California. When he moved east--he was from the Midwest somewhere--and he came to work for us, we discovered he had been in that sit-in. He knew Judy, and he knew different people I knew.

At any rate, I was one of the outside demonstrators, but I wasn't part of the sit-in. There were other people taking the lead on that, because I wasn't involved with DIA at that time.

Jacobson

You weren't?

McQuade

No. I left DIA. I think I kept up my dues--

Jacobson

Where were you?

McQuade

I was at NYU; I was studying to be a rehab counselor. During that time at New York University, there were access issues. We formed--this was Pat who came up with the name. There was a signer of the Declaration of Independence, Stephen Hopkins, who had some kind of a disabling condition. I forget what it was. Pat found that out, so we called--Pat got his Master's Degree from NYU School of Public Administration. He came up with the idea of having--

---

---

McQuade

Pat--I know--I forget if Marilyn Saviola was involved. I'm going back for one second in terms of the sit-in at the local--it was HEW [Health, Education and Welfare] then, HEW offices, at 26 Federal Plaza, I think, is where the sit-in was. Pat, I'm positive, was one of the people involved in that. He would probably be able to tell you who else were the prime organizers, but I know that there were people who demonstrated outside for a bit, and then there are the people who were going to stay the night, or however long it was until Califano promulgated the regulations. So, I know I went to the outside demonstration. But during that time also--Pat will have to tell you this--I can't remember when I went to NYU, which was the fall of '75--I don't remember if Pat was still finishing off, and I believe he was. I think he was finishing off his Master's Degree. He was working on that. There was a fellow who--I don't want to mix these two things up. Several things were going on. There was a 504 committee at the college; an implementation committee for 504 regulations were implemented. Once they were implemented, then the university had to have disabled students on this committee. There was a law student, Michael Schwartz,

[Portions of the tape inaudible through the end of Tape 5B. Some text added by interviewee after interview.]

He became a lawyer. He was deaf. He was on the committee. When we went to school, Pat came up with the idea of us calling the disabled students organization the Stephen Hopkins Society. That was our disabled students' organization. Pat was involved, and I was involved. At some point, Denise Figueroa came to work at the college in the disabled students' office, as I remember it.

That was the other thing: we were involved in hiring the disabled student advisor. It was the student's office, and we were involved in hiring a disabled student advisor. The man in charge of the student activities office spoke with disabled students.

Marcie Goldstein was at NYU, and she was in the rec program. I think Denise came to work there, as I remember it now. I think I had graduated when she came to work. I think she was working with the disabled student advisor that we hired. He was not my first choice. At any rate, Bobbi came from the rehabilitation counseling program. I think she was--she graduated--because she was working at the Institute for Rehabilitation Medicine at New York University Medical Center.

Jacobson

How did this come about?

McQuade

Okay, when I went there, we were over in the East Village, the rehabilitation counseling program was in the East--and there was a ramp to get into the program--the kinds of things we were looking over when we were there were program accommodations for students. I felt there should be a disabled student advisor. Several things happened. In '78, there was this big demonstration in support of transbus. It was by the UN, it was on First Avenue. Participants blocked First Avenue at rush hour traffic. The point was that we wanted the New York City Transit Authority to buy this bus. So, the strategy that was worked out was that people who were willing to be arrested would not leave when the police told us to leave.

---

Jacobson

Who was--?

McQuade

The late Phyllis Rubenfeld, as I remember it, was one of the people who were organizing the demonstration because she was a board member of the American Coalition of Citizens with Disabilities. I used to go to those meetings when I was a borad member of DIA--I used to go to those meetings. I don't recall being a board member. Judy was on the board. [I knew] a variety of people who were on the board. But I remember attending the meetings as one of the delegates from New York, I was in DIA then. I think that was an effort on the part of ACCD to enforce some section 504 requirements for proper access in the transit industry by requiring transit providers to purchase this accessible bus. DIA people were involved in it. Bobbi was in that demonstration, I was in that demonstration. It was a non-violent protest, of course, with civil disobedience. When the police arrived they dragged us from the street and those willing to be arrested kept going back into the street. I asked the cop who pulled me out of the street, "Are you going to arrest me, or what?" I went back into the street. He said to me, "Don't worry. You're getting arrested." He put his foot--wedging it in the front wheel of my chair--I couldn't move my wheelchair. So I couldn't go forward. When reinforcements arrived he told two cops to arrest me--one was a black cop and the other was a white cop. So they're walking away, pushing my chair and they're apologizing all the way to the police car. I was about to get into the police car, when Phyllis yelled to me to refuse to get in the police car and so I was lifted into a "paddy wagon." I was taken to an accessible police station on 51st Street and issued a summons for disorderly conduct and released. But there was TV and newspaper coverage of the incident.