New York Activists and Leaders in the Disability Rights and Independent Living Movement: Vol I
III. The Development of the First Independent Living Center in New York, Working for New York City Transit
American Coalition of Citizens with Disabilities [ACCD]
Okay. Let's just briefly go over, what do you remember about ACCD?
McQuade
We were in Washington. I suspect that we were there around the time of the President's Committee. I don't know that we went there for a separate meeting the first time. We were discussing having a national organization.
Jacobson
What year?
McQuade
I'm suspecting that this is like '74? The only reason I'm saying that is like '72, we were focusing on the Rehab Act, and '73, again, all the efforts were really to mount the demonstration to put the pressure on to get President Nixon to sign the Rehabilitation Act of 1973. So I'm suspecting it was the next year, '74. I think it was in the spring. Various people were gathered and there was discussion about the need for the organization, the structure, things like that.
In some ways it struck me as kind of funny. There was one discussion, since it was cross-disability, about people with mental retardation, what if somebody who was mentally retarded was elected to the board. I remember people were talking about it, and I remember one of the things was--I was talking to someone, or else I was talking in the group, I can't remember, and I said, "Look, it's democratic. People can vote for whomever they wish. If they wish to vote for somebody who has mental retardation, so be it. People are going to make judgments on who they think is the best person for the job. It's not something that we have to be fearful of." It's the democratic rule, basically. I remember Judy was there. Phyllis Rubenfeld was there. I mean, I would tend to think most of the disability rights leaders of the time were there. I didn't know everybody. I knew the New York people. Judy knew more of the people, because she had been traveling all over the place around the country, attending different conferences and everything.
I think the structure ended up being that there would be two delegates, I think, from each--I don't know if it was region or each state. I forget how that was organized. I tend to think region, like using the federal regions, because otherwise, you would have like a hundred people. I have a feeling we went by the federal region, but I know there were delegates from the localities. In some ways NCIL was sort of like that. I wasn't involved in the ACCD board, so anything else about that--I was involved when we were getting it together, and I certainly supported having a national organization. I don't know if I was president then of DIA. As I say, I can't remember. I ran for president, the '73-'74 year, because I think we held elections every year. Or it was the '74-'75. I know I left DIA the fall of '75.
Jacobson
I don't remember Pat Figueroa as president.
McQuade
I don't know--
Jacobson
But I remember you as president and--
McQuade
And Angela, right?
Jacobson
Angela.
McQuade
I think when I was president, I think Angela was one of the vice presidents and I don't know if I ran--maybe I ran for two years. Maybe it was '73-'74 and '74--
Jacobson
I went back to grad school in '76, and I dropped out--
McQuade
I went back to college. You went back to grad school.
Jacobson
Then in late '77, '78, I moved--
McQuade
To California. Yes, because I remember we had lunch around that time, before you were moving. Were you going to be getting married when you were moving, or did that happen after?
Jacobson
No.
McQuade
Had you met Neil then?
Jacobson
I knew Neil from camp. It was one of those things where you knew everybody. When you met, you knew who they were. There was already an idea, but we didn't hook up until much later. But I want to get back to you. Were you more involved in ACCD?
McQuade
In ACCD?
Jacobson
Yes.
McQuade
Not terribly. I remember being there one year, and we were trying--I think ACCD now had been formed, and there was some issue that ACCD wanted the support of the membership on, as I remember it. I know Marcie Goldstein was there. I think Marcie and I were sharing a room, I'm not sure. I don't remember if Denise Figueroa and Pat
Figueroa were there. I remember I was there, and Marcie was there. We were from DIA. I believe that's what we were representing. There had also been this group--as I said, there was a group that we formed back in New York. Carr Massi was involved in it, Anna Fay. A lot of people that were at IRM [Institute for Rehabilitative Medicine], and we used to meet there. Again, I think a local coalition, but I think it was relatively short-lived. We were trying to get the people to support a position on something, and for the life of me, I don't remember what it was.
There was a dinner; we were at that. I remember I was supposed to stay back in the room for a time, different ones of us had agreed to do that in case anybody came around with questions or wanting information on something. Somehow, we met with this group of people in a room. I think it was our room; I'm not sure. I know Phyllis was there. Somehow--which I didn't know until I guess it was after dinner--somehow I had annoyed Phyllis over something that I had said. I guess what it was is that at the meeting, whatever we were trying to do to get these people to support it, I kind of felt like people weren't ready yet to say "yes" or "no." They wanted to think about it. My feeling was Phyllis was pushing too hard. I remember saying something like, "Look, I can stay back here in the room, and if people want to think it over and then come back and tell us, they can do that." Something like that. That was it.
The group broke up. We were going down later to a dinner. We went to the dinner. Phyllis said she had a headache. I don't know, I was saying something supportive, or commiserating with her, and the next thing I know, she's lashing out at me not to pull my New York shit there. To this day, I do not know what the heck she was talking about; I really don't. I just know I was annoyed enough that I felt like slugging her, because I'm sitting there, thinking to myself, I'm sitting in a room, waiting for people to come by if they want to. If she felt I did something that I shouldn't have done, talk to me then. She said something like, "Well, I talked to other people, and they agree with me." I said, "Enough." I just walked away. I was talking to Marcie Goldstein later, and she sort of didn't want to be embroiled in it at all. I met somebody else from DIA later on, and I said, "Do you know what the heck this is about?" The person said to me that Phyllis had talked to him, and he was surprised at what I had said in the room, but that was all that he had said. That's a very personal, unhappy recollection of that time there.
Then really, I wasn't involved with that. I know Phyllis was involved, and Judy, and whoever. I'm sure there's names of other people that I would know, but I don't recall them. There were lots of national kinds of issues. What those issues were, I can only guess. Phyllis organized the transportation demonstration well after that, because I was back in school. It was like '78, towards the end of the summer. She did that whole organization of that--I'm not saying all by herself, but she was the prime person, and I believe that had the support of ACCD.
Jacobson
Now Eunice Fiorito was president of ACCD. Was she doing that and the mayor's office?
McQuade
I don't think so. I could be wrong. I kind of think--and Larry [Allison] would probably be able to tell you this--Eunice, I think, went to Washington and got a job somewhere in Washington when she was doing that. I don't think she was at the mayor's office anymore, but I can't be absolutely sure because I wasn't intimately involved with that. In fact, I remember seeing her one time in Washington at one of those meetings. By that
Jacobson
Larry Allison?
McQuade
Larry Allison, sorry. When Eunice became the director of that office, they were really trying to be more activist. After participating in the gasoline demonstrations, they were basically told, "No more. You cannot lead demonstrations." Because they were very active in that. People had to learn some of the restrictions of when you're in government. There are certain restrictions on the kinds of things as a government person you could participate in. But they were active in that. Eunice, I think, was a good leader in that office. Later years--people will probably have different opinions on this--but in later years, some of the people--it was like a reward for your work in the Democratic Party, because we're a pretty democratic city, party-wise.
I guess my sense of the office, and this could be wrong, you're seeing it from the outside, I don't know that the impact was that great. I think Carol Roberson, I don't know if you'll be interviewing her, she's a friend of Judy's. Way back when, I think she came to a few meetings at Judy's house, but she wasn't very involved at that point, but she was a very strong director of that office. Ann Emerman was a strong director. Things were happening, and there were some years where you didn't really feel a strong impact. That doesn't mean nothing was happening, but they may have been working on more internal things. Parking permits were an issue, like expanding who could be covered. I'm sure they were supportive of that. There may have been more things done in terms of employing persons with disabilities within the government. But in terms of big broad issues, I don't have a very strong recollection. I know we worked with the office, okay, but I'm not remembering--because definitely there were things that we worked on with the office. But I don't have a-- [Interviewee Note: Carol Roberson and Ann Emerman were directors of MDPD in the late eighties and involvement with their office was as executive director of BCID.]
Jacobson
Who do you mean by "we"?
McQuade
When I say, "we," DIA. When I'm saying "we" in this instance, it would be DIA, there would be legislation or something. If the city human right's law, first it was passed some time in the seventies. Whether that was during Eunice Fiorito's time, or it was one of the later directors--I'm not remembering the names of all the directors. I know later on Julie Shaw became a director. There was an Anthony Santiago. I can't remember if he was before or after.
Jacobson
When you say human rights laws were they particularly focused on people with disabilities?
McQuade
Say that one more time. Say the beginning part.
Jacobson
When you talk about human rights, would it primarily--
McQuade
Disabilities. People with disabilities. The first law that passed that protected people with disabilities, protected people with physical disabilities. I'm sure blindness was included.
In what aspect?
McQuade
It would be illegal to discriminate against somebody in employment, in housing, places of public accommodation. A civil rights law. Then they added on--
Jacobson
Was that before--?
McQuade
Before the ADA, yes. What I don't know--whether 504 was '73 when the law passed, so whether it was after that or before that, I'm not sure. It might have been after. I know that when the ADA passed, Carol Roberson was--I believe she was still in office, and the city human rights law was amended to be closer to the ADA [Americans with Disabilities Act], or to incorporate some of the ADA. One of the differences when it comes to employment is in New York City, if you have four or more employees, you are covered by this for employment discrimination, whereas the federal law is fifteen employees, it goes down to fifteen. It started with ADA at twenty-five and dropped down to fifteen. Fifteen is the more the norm in federal laws. The human rights law, I don't know the exact date. I can't remember the Flynn, Bloom, Koppell bill that I mentioned to you, which was the state law. I have a feeling that passed first, because I know we worked on that, and then later on the seventies maybe the city human rights law, but I can't recall the date on that one. Larry might remember the dates on some of this, and it would be in the city code and all of that.
The formation of an independent living center in New York, the impact of Willowbrook
JacobsonI want to move along to the independent living center. How did that come about?
McQuade
In our state it came about I believe through the efforts of Fred Francis. Fred was from SOFEDUP. He worked with DIA, a good friend of Pat Figueroa's. They really are responsible for a lot of the access, if not all of the access, that came about in the city university system because they organized disabled students there.
Jacobson
Is--?
McQuade
Fred lives upstate. Fred is retired, I believe from OVR/VESID. He became a rehab counselor, and he went into the state vocational agency, and he moved up into administration. There was also a fellow, O'Connor was his last name, and I'm blanking on his first name [Greg], but Denise Figueroa or Pat would remember him. They really worked to get the federal money into our state--I believe it's the part B centers--and to get some state--it was a pilot project, let me put it that way. They used some state money, and I think they also went for some of the part B money. I think it was around then. From the federal government. The independent living money from the voc rehab act for independent living. Some of the centers only had state money, no federal money, and some centers had both. What they did was, they went around to organizations, grass root organizations around the state to encourage people to apply to become a center. It was different than in California where you had these activists pushing this.
The disability activists, we weren't working to have this happen; I found out about this happening. We knew about Berkeley CIL [Center for Independent Living] and all of that. But in terms of our state, I don't know that there was this big grass roots movement here pushing for--Fred knew about it, he went, and they got different organizations in various locales in the state. I think originally there were nine centers. CIDNY [Center for Independent Living of the Disabled of New York] had the home attendant referral program, that was really what CIDNY was doing, and it was Pat Figueroa and the late Annemarie Tully--they were working on that. I don't know that Pat had any other staff.
Jacobson
What about Bobbi?
McQuade
Bobbi came on later, though. I don't mean it was a huge amount later. I think Bobbi came on when he got the independent living money.
At any rate, what you had was these different organizations who were approached to see did they want to become an independent living center. The program I worked for was Independent Living for the Handicapped. It grew out of the Muscular Dystrophy Recreation League. These were parents of children, very young children in most cases, who had muscular dystrophy, who broke basically with Jerry Lewis in that they wanted to raise money to do things for their children now. Research was great, they were not opposed to research. But they saw a need for things to be there for their kids at the moment. From that, as the adults grew up, there was more involvement of these disabled adults, and new people came in who weren't necessarily there from the very beginning.
Jacobson
I want to stop for a minute. You touched on before that the grassroots activists weren't--
McQuade
Remember, I'm just graduating from college with my master's. I'm involved with the disability students' organization and with the section 504 advisory group at NYU, but--
Jacobson
Okay. Now, my question is that CIL in California began in 1972. Were the disabled activists in New York aware that this was happening?
McQuade
Yes. In fact, some of these people came to New York. Judy had some of these people come over.
Jacobson
Did they talk about DIA?
McQuade
Anything that happened in DIA after I left, I really wouldn't have kept close tabs on. What I was dealing on that particular point was more related to access at the college or issues at the college. The big push was Califano signing the 504 regs. The issues that I really was aware of: Califano, getting him to sign the 504 regs. That was '77. The other big thing was that demonstration on transportation that Phyllis organized, I believe, for ACCD. Definitely, I knew 503; I knew 504. That was from when I was involved with DIA, I had copies of the regs on that. Basically that's what I recall. It doesn't mean there weren't more things going on, but those were the two things that I really recall there was a lot of activity around.
Ask your question, because maybe you're going in a different direction.
I was just wondering where people put their energy. It seems like in New York people focused on issues as compared with California in Berkeley, where the reason that CIL began was that the people organized on campus. Then when they graduated they realized that unless they got their act together they were asked to go back home or back to institutions. So, I'm just wondering what happened here.
McQuade
I think here there was the whole Willowbrook thing. The scandal with Willowbrook, what that did was, it created a whole protection and advocacy system. If you were in an institution, there were programs to get you out. There was work being done. That's something else, you just spurred a memory in my mind. When we were involved with DIA, the early years with Judy and everything, we met parents who had kids who had mental retardation or severe learning disabilities or autism or whatever, who needed respite care. That Wolf Wolfsenburger's conference--the Policy in Action conference--some of the issues that were in there had to do with respite care, support services in the communities so people didn't get institutionalized, and services out there for people coming out. But Willowbrook, that was a big issue in terms of people involved with developmental disabilities.
DIA's position always supported independence and people making their own decisions, and as much support services as they would need. Things aren't going on in a vacuum; there's a lot of different things. Where people put their energy kind of depended upon what meant the most to you or to your organization. Since DIA is a multi-disability organization, I don't think it focused necessarily just on one thing, but certainly on things with physical access, a lot at that time. That's some of the major things that were going on. Home care was certainly--attendant care was an issue. It became even a hotter issue when the city decided to contract out the service. Then there was a whole big thing about who would provide the service to--the "self-directing" was the term that was used--disabled. I think it's a misnomer, and I think I said that earlier on, because you could be self-directing but not have the time or the connections to do all the research, to do all the groundwork to get your attendant, and you might want to call an agency and have an attendant sent to you, but you're capable and will be directing that attendant. Or you could be totally self-directing in the sense that you want to advertise for the person, hire the person, train the person, do the whole thing. That caused a little bit of a division in the community, because Pat was doing the referral service, and many of these people used it, but now that the city was going to give contracts out, his agency was one of the places that was going to seek the contract. Now, the city had different requirements.
So what happened was there were two hundred people--Marilyn Saviola could detail this for you--who wanted to be doing what they were always doing and just wanted a financial conduit. They didn't want to keep the payroll records, they didn't want to run the agency. They would have a board. They wanted a fiscal conduit to give them the money to do it, and somebody would write the checks and keep the records and everything, but they would register their people with the agency and take responsibility for finding replacements and all the other things, and there would just be a list of people.
The point I did want to make on this is the growth of independent living in our state really came out of the efforts of Fred Francis, Greg O'Connor. Later on, there were
Jacobson
Attendant referral.
McQuade
It could be attendant referral. That didn't go that way in the city because of the whole effort on the part of the city to contract out the service. New York City, I have to say, is one of the few places even in our state where you could get twenty-hour care. There's been limits put on it. It's grown tremendously, and there's been tightening and limits put on it, but upstate a lot of people were going into, and I assume still have to go into institutions because they can't get the level of care that they need in the community.
Independent Living for the Handicapped, Brooklyn: the office, staff, funding, agenda
JacobsonDenise, let's get back to the Brooklyn CIL. What was it called?
McQuade
It was called Independent Living for the Handicapped. When that center got the grant, there was money to hire a director, a full-time staff person, I think a part-time secretary. You could get a van because you needed to transport people where they needed to go. I think there was money for a second person, but what I can't remember was that the first year's budget or the second year's budget. They had had this little space in Flatbush, just a very small office. Meetings used to be held there.
Jacobson
How big?
McQuade
This was not separate space. Our director's office was a desk over here, there was my desk, there was a desk for our board member, who was the late Edmeé Rodriguez. She was going to NYU for a master's in rehab, and she did a practicum with us, which is usually like a day a week, and then her internship, which is three days a week with us. We had a secretarial desk. I forget if we had a spare desk where our driver could sit if he wasn't driving. We eventually purchased the van. Money was slow-coming as I remember it, so we were really working on a shoestring. We had all these requirements, so many people to serve. We had to come up with everything, our forms. Since our director and myself were both rehab counselors--and Edmee was studying to be one--we basically knew how to do intakes, get information that you would need, and I wrote up the original forms for us based on what people would be coming to us for.
Jacobson
Who was the director?
McQuade
Sue Fonfa was the director. Her husband Allen had been a volunteer--nondisabled--but a volunteer with the Muscular Dystrophy Recreation League, which then became Independent Living for the Handicapped. As I said to you previously, they had really
Jacobson
Was that before the center or after?
McQuade
That was before the center. I think that's why Fred knew about the program, why he approached them to apply for the money, because they were doing some of the things that a center would do. The difference--When I was hired by Sue, Sue had actually come to DIA meetings, only I didn't remember her.
Jacobson
Who was she?
McQuade
Sue Fonfa was a rehab counselor, and her husband was a rehab counselor. They were involved in working with the deinstitutionalization of Willowbrook, like getting people who were coming out into a vocational program. That was the people that they worked with. They volunteered at Independent Living for the Handicapped.
Independent Living for the Handicapped raised money by running bingo. That's how they raised money to do whatever they were doing in terms of recreational programs, or helping out and everything. They had a board that had disabled people on it, but the disabled people generally were not able to be active in the bingo thing, because you had to run around with cards. I went there a couple of times when I was a staff member. It was not something that I found particularly pleasant.
Jacobson
Sue was not disabled?
McQuade
No. This is another thing. Many of the organizations that went for these contracts, they had disabled people. They were organizations with disabled individuals involved, and they may have had nondisabled people also, disabled and nondisabled. DIA had to be a majority of people who were disabled. I don't know if we had it in our bylaws or it was just by the sheer nature of the people who joined the organization. I think it had to be that the majority on the board had to be people with disabilities. But you could be nondisabled and involved, and there were nondisabled people. What Bobbi Linn told us--this was years later--this goes back to 1973--was that Sue and I shared a room in Washington, but I didn't know it. I guess it was Sue had come with Bobbi, and Bobbi and I, and I think it was Sue, that we all shared this room, except I didn't sleep in the room; I was sleeping in the park. We had this all night vigil. So, I must have met Sue. She did remember me from DIA meetings. This is one of those funny moments in your life when the third person tells you. Sue said, "I met Denise at a DIA meeting." She said, "No, you two shared a room." We're looking at Bobbi like, "You're nuts." Then
The issue of nondisabled directors, recruiting activists to be board members
McQuadeAt any rate, that was a funny thing. An issue that came up, and I think it's important to mention this. When we were all together, when all the contracts had been given out and all the groups had applied, they hired Judy Heumann. There was another woman that came from Berkeley to do a training for us, how to organize things, how to set things up. For many organizations, this was the first time they were to have a contract that handles substantial money and set things up, and to know how to do it and what you should do and all of that. What I know was shocking to Judy, she mentioned it at the meeting. I think the first time it was mentioned was this nondisabled person who was with Judy--the fact that there were so many nondisabled directors. When Susan hired me, she knew I was an activist, and she was hiring an activist. She wanted somebody like me to be the second person there. This became a very uncomfortable time for the nondisabled directors, and I think for some of the disabled program directors or assistant directors or whatever the other people were called. In some places it was just a nondisabled director who was there at this meeting. The board had to have people with disabilities; I think it was a majority of people with disabilities. For me too, I looked at the movement as being an integration movement. I wasn't working to have an elitist disabled group of people. My concept of what we had been fighting for was that we could all work together.
I remember saying to Judy, and Judy, I know, was totally pissed, but it was a conflict thing. This woman who was with Judy was basically saying to the nondisabled directors that they shouldn't be where they were, and she knew her place. She, to them, seemed like Uncle Tom, because she's a nondisabled person, and they were well aware why the nondisabled person was making this statement. Judy wasn't making it, this, "I'm one of you, and you shouldn't be doing this" sort of thing. The training was good, but this was a horrible kind of thing, because in point of fact, these were the directors and the organizations that chose them as the directors were organizations of disabled people. I was in the position of, if disabled people choose a nondisabled director, isn't that their choice?
We were at dinner one night, and Fred was saying--he probably won't remember this, because you'll remember the things that hit you rather than the person that says them--he was talking about how some disabled people just don't have enough confidence and since I was the second in command, I'm assuming he meant that for me. I didn't want to be director. I'm fresh out of school, right? I don't know how you felt when you first graduated, but I'd never dealt with a budget; I didn't want to deal with budgets. That's why I became a counselor. I didn't want to have to deal with money. [laughter] Not the only one, but one of the reasons, but I felt my skills laid in something else. At any rate, it was tough. I'm speaking very earnestly here, as the person with the disability, you don't know whether the movement has gone someplace else that you have no idea it went, and should you be in this role if the movement--. I tell you honestly, I thought
Jacobson
What year?
McQuade
This would have been '79. I graduated in '79. This would have been the fall of '79, or maybe it was '80, because I can't remember whether the training was in the spring. I got hired in '79, and I guess it was October, so this might have already been 1980, and the training was being put on.
Jacobson
Who hired the director?
McQuade
The organization. Now, granted, here are people--Susan and Allen had been volunteers at the organization.
Jacobson
What was the name?
McQuade
Independent Living for the Handicapped. Now, how that came about, whether the board interviewed her and hired her--. She had done some volunteer work, and the fact that her husband was a major volunteer there, I'm sure they felt comfortable with somebody they knew. Whether that decision--I know the board had a majority--I can't remember if the state required a majority of disabled, but I think they did. There were disabled people on it. Again, here's the difference: in many ways this organization--and it did very good work--but the disabled people on it were not totally directing it. From the way we ran DIA there was no doubt that people with disabilities were the force behind it, and they were making the choices. Looking at how it was--. We worked very hard, Sue and I, to get more activists on the board.
Jacobson
Were these people from the community?
McQuade
These were people who had connections. They were people with disabilities who had connections to the organization. How long, I don't know. They would get services. When I say "services" they might have been some of the people who were helped to set up in their apartment and everything. I would have to ask Allen all of this. They had been on the board a long time, and some of them had been there for a very long time. Some came on as adults later on. The board member who told me about the job, and who was our intern, was self-directing and was committed to that. What actually happened is we worked to get more people like--for a time, Marilyn [Saviola] was on our board if I remember it correctly. I forget if we got Angela on our board, I don't remember if she had come on our board.
Jacobson
Who?
McQuade
Angela Thompson. I have to ask Marilyn. But Marilyn, as I remember it, and I don't think I'm wrong on this--maybe I am wrong, I may be confusing it--but I thought for a time Marilyn was on our board. Some of this stuff I will ask my friends, and I'll try to remember who it was. What eventually happened was it became what it was supposed to be. Not only majority disabled in numbers, but in philosophy. You know what I mean? We brought people on who were activists in the community. I want to go back for a minute.
What happened was, different from Berkeley, again, a person who had a vision that there could be this whole community of centers throughout the state doing what Berkeley was doing, went to different groups that were disability activist groups. But it wasn't like they said, "Hey, we need a center," and went actively to the state and said, "We want money for these centers." It was really Fred, knowing about this, coming to established groups to see which group wanted to apply, and then to judge which were the best groups to give this to. Some groups--like there was the Poughkeepsie group, I think, that was fairly new, and it had a lot of connections to DIA, and they formed, and they got some money and all. Some groups made it and some groups didn't. It all did become what the vision was eventually.
But what's interesting is it wasn't a totally correct model of what CIL was or totally adherent to the CIL model. So you'll find around our state now--I'm away from it now--most times, you will a get disabled director. Now, there are some directors that have never left their centers. Sue left, and I became director. The board had to approve it, but Sue had certainly felt that I should--I wasn't sure that I wanted to become the director, but then I decided if somebody else comes in, and I have to work for somebody else, and their ways or their vision for the organization is very different from mine, I'm going to hate it, so I'll give it a try, and if I fail, I fail.
I'm saying, going back, it was almost like putting the cart before the horse in one way because it wasn't these grassroots organizations saying, "We want this," it was somebody coming to them and saying, "You could have this. This could be something that you could be doing. Do you want to do it?" That's what I mean [by] it's different. Then there's this whole controversy over how many nondisabled directors there were.
What I think also is that one of the problems for all of these groups, running a center, when you are dealing with a lot of money, you have to know what the hell you're doing. CIL sort of worked. I know CIL had different problems and all of that. I don't know the specifics, but no center comes away without problems. It's really important to have management skills. If you're bright and have a sense of how to organize and how to run things you can learn it, or you could take a course, or something. It's really important that you have fiscal integrity, because centers have gotten into trouble with unethical behavior, people stealing, all kinds of things. One of the problems is that, when you're established too, then there are more contracts, more responsibilities. When you're starting out a lot of times, you're learning as you go along.
Finding qualified staff
McQuadeI think the other thing that's--this is my take and I'm just going to say it, and it still is my belief--I think you do your damnedest and we held positions open longer than if we didn't have the philosophy of looking for a qualified disabled person, that I would have done--but if eventually you've done everything you humanly can do, either you have to think of the overall, do you let your organization go to hell in a handbasket for this principle, or do you say, "We've searched--?" I'm not talking about the perfect candidate; I'm talking about that you have not found a candidate that you feel can take on the job, then I think it's okay to hire somebody nondisabled. You have to have your
Sometimes the person who is nondisabled is more of a firebrand. They feel this need to be more of a firebrand than the person who's disabled. For me that's kind of where I've always come down. I think you have to make a really good and honest search, and you have to really try to find a way to make it work. Certain things you can hire somebody else to do if there's certain skills that are missing. I can't speak how the movement is nationally. I also think that--and I said this to Judy way back when we were first starting out in independent living, the movement, the center and everything--what becomes a problem is, not everybody is an activist; not everybody wants to be an activist. What ends up happening is, the downside of our success, as people have more opportunities and get the skills that they need and can get jobs elsewhere, they don't need this; they don't necessarily want it. They just want to go out and be a painter or go out and be a computer expert. While they'll fight for their rights if they need to do it, they don't want to spend their life in professional "disabilityism." That becomes a real problem, because then your salaries are always so low in comparison to other human service agencies who also don't have high salaries. You need to attract a really high caliber person, and the centers did this.
As long as you have enough people with very good skills, you can train somebody who needs to work their way up; you can do that. But if everybody is poorly skilled, you're just going to have your programs fall to pieces. I think in some areas they'll make it, but I really see that there is a major problem facing these organizations. If we don't find a way--we're not near the point where you can say, "We don't need centers anymore," because you need the advocacy and you need places for people to go and see other people with disabilities--I don't want to overstate the role model, but seeing them doing, they can share their experiences. Women talk to women, right? I've learned from other disabled people. I still learn. We talk to each other, and you say, "I'm having trouble with this," "Well, I tried this, or this got through." There's a wealth of information, just life kind of information. But it concerns me a lot that if we can't pay decent salaries, we're not going to attract people to this. They may go into regular human--
The challenges of getting the center started, the population served and services provided
JacobsonI think that's a very good point. What did you do at the center?
McQuade
This I remember. Starting out, I was the sole staff person. I did housing advisement, benefits advisement; I did presentations; I kept case notes; I did advocacy. I went out into the community. Susan ran the fiscal stuff, and she did community stuff too. She did some work with the--what do you call them?--we didn't call them constituents. What the hell did we call them?
Jacobson
Consumers.
Consumers, yes. I should never forget that word. Some places are using "constituents" now. At any rate, she did some of that. She had to do the fiscal, get the reports in. I would get the reports that I would be responsible for, like how many people we saw, what were the issues. The first year we were developing the forms and everything. We were interviewing people together. We had a part-time staff person. We just had disasters. We had to fire our first person. I'm telling you, we both went out for a drink. We went to an Italian restaurant. We both had a glass of wine, and we both looked at each other and said if we had to do this again we were going to be alcoholics, because we were so upset. We knew we had to fire this person, but we had never fired anybody. We would be the people getting fired rather than firing somebody! [laughter]
It was awful, but it was exciting, too. We'd go out. You'd hear about a new building going up, either Section 8, or it was going to be accessible, and you'd go out and look at it. We started meeting with other agencies. Say, for example they weren't complying with what was then 504. The first year we were getting in touch with people. A lot of people thought, especially from the name, we were residents. We had a hospital call and say to us, "We have this person. He's disabled. We're discharging him. Where are you located?" I said, "No, no, no, wait a minute. Let me explain this to you. We are not a residence. What we do is we tell people how to apply for Section 8." There was 202 housing, elderly handicapped housing. We believed, you make the choice. you might choose to be in segregated housing, that's your choice, as long as you know your options.
Jacobson
What was your population?
McQuade
Okay. With Brooklyn it would be mostly people either on or eligible for SSI, some SSI Social Security Disability, some welfare. The population was every disability: ambulatory, disabled, persons who use wheelchairs, persons with cerebral palsy, spinal cord injury, psychiatric; that wasn't a huge part, but it was definitely part.
The people who were members of the organization, they were also your consumers. We would get issues like they would want a ramp into their building or something, and you would have to see what does the law say on this. Largely also, transportation. We were big into transportation. Mobility through Access, that coalition was there. DIA had the lawsuit, EPVA. We were very active in that. We went to those meetings religiously. Some of our board members were on the 504 committee, so they would report on that. We worked on other things.
We would be helping people to get their social security disability or their SSI. We would advise people like--I'm blanking on the letters, but it's basically a self-support plan, so we would explain about self-support plans. We would explain to people who were in sheltered employment how working affected their benefits, how much they could earn. We would get people referred. If they needed vocational stuff, we would get them referred to OVR/VESID If they needed legal services, South Brooklyn legal services worked along with us. Say for instance they were going for a housing interview with HPD, Housing Preservation and Development, or the city housing, and they were deaf. We would work with them to get an interpreter for them or make them aware that the city agent have to provide an interpreter.
Working with the Center for Independence of the Disabled of New York [CIDNY], the self-help model, moving the office to a safer location
McQuadeLater on--Marilyn I think was now director of CIDNY--but we worked together with the center. There were first two centers, CIDNY and us. We met with CIDNY, and we talked about how we were dividing up the city, because CIDNY was located in Manhattan. We were located in Brooklyn, but we were it. We did Brooklyn and Queens, and they did Manhattan and the Bronx. I forget if we both handled Staten Island or they handled Manhattan and the Bronx, and we handled Staten Island, but we divided it up. Susan and I met with Pat and Annemarie Tully and we basically divided up the city so we wouldn't have conflicts.
You were telling me about--
McQuade
What we would do, CIDNY and us, we would give presentations to rehab facilities, local OVR offices. It wasn't called VESID then, it was OVR; that was later when they changed the name to VESID. We would make them aware of what we were doing and what we could do, and also how we worked, because we were working very differently from most social service agencies. It was a self-help model. So, if you came in and wanted to apply for Social Security we didn't fill out the form for you necessarily. We talked with you about what Social Security requires, what you needed to do, made sure you understood it, made sure you could do it on your own, or if you couldn't do it on your own, we reviewed the application or we would assist you with the things you couldn't do. But, the whole philosophy was simply not to do it for you, but for you to understand how it works and how to do things. If you called and you were having trouble, and you couldn't get any satisfaction, then we would call the agency you were dealing with, and talk about the problem and try to resolve it for you. That was a new thing to people.
A lot of times, people who came to us would say, "Well, what do I need you for?" You need us to explain to you what you need to know to live independently in the community. Some of the stuff that we did was peer, for me, pure peer counseling. You would be talking to a person and he/she would be defining for themself what they wanted to do in terms of independent life. Sometimes it would be just dealing with their fears and concerns. Sometimes it would be getting them to be aware, "It's going to take a long time for this apartment to come through. There's a lot of things that you have to work on in-between." Getting people to follow up. Defining roles and responsibility. Most people who came to us were very used to coming to have their problems handled.
The social worker took care of it, or they didn't know what their benefits were, or they didn't know--really, really didn't know. They didn't have bank accounts. They wouldn't know necessarily all the things that went into being on your own. We ran groups sometimes--at our center, when I was there, even when I was leaving, the groups never--they worked a little for a little while. Then they wouldn't work. We always had trouble getting the groups to really keep functioning. But when I left, other people, they had other groups, and the groups seemed to take hold and everything.
We would have presentations, or we might invite somebody to speak. A lot of it was on very practical things, knowing benefits, or understanding Medicaid. Most people on Medicaid--"How do you handle this problem?" "What do you do with this?" We also--this is later on, as we grew--we hired an information person. My job became other people's jobs. Of course, they could take on more. I think when I left, we were doing anywhere between 1,200 to 1,600 people per year. Along with that we would give--when ADA passed--we went to the trainings that DREDF [Disability Rights Education and Defense Fund] did with the Department of Justice and all of that, and other staff went after me. Part of your obligation was to do ADA presentations, so we did that. I worked with EPVA, because Terry had gone for the training. And Harilyn--one year, Harilyn and I and Terry, we had all been at the same--. [interviewee note: DREDF trainings on the ADA and we committed to train others in our community.]
Jacobson
Terry?
McQuade
Terry Moakley, he's from Eastern Paralyzed Veterans Association. So we worked together to do ADA training in all the boroughs. It was a good experience. I want to backtrack for a minute.
The other stuff that we were doing is we didn't have a budget for interpreters so we worked out these barter agreements. Catholic Charities at that point had interpreters; they had a deafness program. They needed housing counseling. So we took their clients--on certain days, it was "Deaf Day," or "Housing Day;" it wasn't just housing--we took their clients who needed housing advisement and assistance, and we provided that, and they provided interpreters. We got a certain amount of interpreting for our clients, our consumers who were deaf. So, we worked out unique things like that. We also did something with South Brooklyn Legal Services, where they could refer certain people to us for housing and services they didn't provide and if there were certain things that we needed, they would do it for us. You know, you did creative things to try and cover what you didn't have. Or you just put in for it. We need this; this is a service we need to be able to provide.
Jacobson
How ethnically diverse was the population?
McQuade
How diverse? Ethnically?
Jacobson
Yes.
McQuade
I would say our population was a majority black and Hispanic.
Jacobson
Okay.
McQuade
Everybody. We had everybody, but that would be largely that. What we did also, we went from being lily-white--it wasn't a plan; it was just Sue Fonfa was Jewish and white, and I'm Irish and Catholic. I was disabled. Edmeé Rodriguez was Hispanic, Puerto Rican, she was our Spanish-speaking counselor. Our drivers generally were African-American. So what we did, we made it a concerted effort to start getting more staff who were ethnically diverse. We didn't have a large Asian population. Every once in a while we had some Haitians, but what we would do is, we also got a contract to run a home-care program, the city's home-care program like CIDNY did. And Allen was
We were moving [our first move was in '80 I believe, from Winthrop Street to Jay Street], and it was so funny when I think of some of this stuff. We moved our office. We were in this really awful place. Someone got murdered on the corner. It was like a bunker. Someone got murdered on the corner, and we made a concerted effort to move our center. It was too tiny. It was really very, very tiny. You would be talking to someone, and mice would be running back and forth.
Jacobson
Mice?
McQuade
We had mice; we had roaches. It was a great place. We would come in in the morning. We had this secretary that if she saw a mouse became hysterical, so one of the driver's jobs was to get to the office before she got in to remove the corpses of the dead mice, because we had traps. We had that gluey stuff. So it was quite a place. Sometimes you'd be siting there and your eyes would roll back and forth with the person you were talking to you because you would hear [makes a scampering noise with fingers]--scamper, scamper, scamper.
At any rate, we moved to Jay Street. One, we wanted to be more centrally located. That's downtown Brooklyn. For those who would get there on mass transit, it was an easier place to get to, and we had the van to transport other people in. We were near Borough Hall. We were near the colleges. We thought that it would be easier to go out and give presentations and recruit. We also had to go into Manhattan for meetings, so we could get to Manhattan easier.
Definition of and issues in home care, concepts for independent living
JacobsonCould you talk a little bit about home care?
McQuade
Because it was connected to an independent living center, there had to be a lot of choice. We did a--it wasn't a video; it was stills. We did slides of a sensitivity kind of slide presentation with board members and staff showing accessible doorways, talking about how people function, different types of disabilities, that the person is a person. Emphasizing all these things. Basically this. The contract restricted you to certain things. If people wanted to refer somebody to us, they had to go through a course. That was required by the contract. It wasn't like concepts for independent living. That was separated from the rest of us.
Jacobson
Let's define home care, because different people call it different things.
McQuade
Right. Home care in New York City is provided by, not a home health aide, but a home attendant, personal care attendant. These are the individuals who can wash you, go
Jacobson
How about a bowel program?
McQuade
No. As far as I remember, I'm thinking that they can--I'm trying to think if they're allowed to give you suppositories. I'm not sure that they're allowed to irrigate your catheter. I shouldn't say "catheter." Irrigate your bladder. I'm not sure on that. But the way that's worked out is the visiting nurse--I don't think that's done every single day. I don't think they're allowed to do that kind of stuff. So either you would have to have a family member who does it, or the visiting nurse has to come and do that.
Home care, in this state, follows very much a medical model. That's not something that we support, in the sense that, we basically--for CIDNY, for all the centers that took home care programs, really CIDNY and our center wanted to divide the disabled community between the two centers, but the group--this is not said as a criticism, it's just the way things worked--the group that Marilyn, Concepts for Independent Living, Marilyn Saviola and a variety of people who wanted to be more self-directing but didn't want to deal with the fiscal stuff, they advocated--there were about two hundred people on their caseload--they advocated to have this kind of center, this kind of set-up. But what they had their attendants do could be beyond what the state allows because they are hiring the person; they are training the person; they are making all those decisions.
Jacobson
"The group?"
McQuade
When I say "the group," it's Concepts for Independent Living, the home care agency for people who want to and are able to recruit their own attendants, train them, supervise them, and get their replacements.
Jacobson
I thought it was Independent Care Systems.
McQuade
No, Marilyn works for a different [group]. Marilyn's home care used to come through Concepts for Independent Living. It gets the city money for home care, but it handles the fiscal operation. It does the checks, keeps the time cards. The person who gets their home care paid for through that agency has to sign the time sheets and all, but all the fiscal stuff is managed by the program. They have a board of directors of people who used to service severely disabled individuals.
Jacobson
And that's--?
Marilyn, the agency she works for--this is very funny--provides a variety of services as far as I know. They may provide home care, and maybe today she gets her care through that. But before she went to work there--
Jacobson
Wasn't was she working at CIDNY?
McQuade
CIDNY. She got her home care through Concepts for Independent Living.
Jacobson
Okay.
McQuade
Pat [Figueroa] was the director when the contract came out. That agency also had its own home care program, as our agency did. But that was following the Medicaid and the state health code rules and regulations. I didn't run the home care program, and I've been away from this. I know what it did and what it could do and couldn't do. But some of this, I'm not remembering every single thing, because I've been away from it for a long time.
Jacobson
Okay.
McQuade
But basically, this is what I wanted to say. To not totally compromise our principles, what we did was, we made sure that the people who were working for us received sensitivity training, were made aware that the peope that they work with, they are the people to make decisions for themselves. That's if they were mentally competent. If they were not, they might be supervised by a daughter. Largely your caseload was senior citizens. That's largely who's in the programs, and then you'll have some younger people. But we wanted to be sure--
Jacobson
In the home care--
McQuade
The home care part of the programs, most of the people who get the home care are senior citizens. Not all, but most. Then you have some younger, disabled people as we did. But we worked to make sure that they understood that if the person was capable of directing them that they followed--aside from something that they strictly are not allowed to do. For example, the person wants to go out to a bar and drink, you go with them. Now, if they come home drunk, and they're vomiting all over the place and you have to clean this up, you might have to have a talk to them saying, "It's your right to do this, but I don't want to work for you." Then you might have to spend time talking to the person explaining, if you keep doing this, eventually, we're not going to be able to find an attendant who will stay with you. There's a reality. People are not prisoners in the job. I mean, we had some people that pulled guns on attendants, and believe me, that attendant was not going back to work with them.
What we would work with, if we were talking with people who were having problems with an attendant, and it might be an attendant from our program, it might not be, because some people who are members, they got their home care through Concepts [for Independent Living], not through us. We would talk about the uniqueness of the relationship, the balances; it's a give and take thing. If you do things that the attendant is not going to want to deal with all the time, you may lose that attendant. That's your choice. We're obligated to find you another attendant. It's like we wanted the attendants to understand, you're not there to be the moral judge of the person you're assisting.
You're there to assist them, but for both sides, you're both human beings, and an attendant may choose not to go back to a particular case. Just as you can have someody who starts to need more care than that particular attendant--say a big man, doesn't want to use a Hoyer lift, that attendant might not be able to remain. We might have to get somebody who's stronger. If the attendant says to you, "I can't lift somebody, and there's no Hoyer, and they won't get a Hoyer," that's not the attendant to send to that particular person.
Jacobson
Now, did that consumer have the right to say they don't want this?
McQuade
Absolutely, absolutely. That was something that we had to be sure that that was there, because otherwise you couldn't take the program. Now, if no attendant is acceptable, there could be a point where we don't have somebody for you. We did pretty well, because where our old program was located was the mecca for attendants. CIDNY had a tougher time filling their caseload because where their caseload was, there weren't a huge number of people who wanted to do that work, so that was sometimes--. Their agency is in Manhattan, but as far as I remember they accepted clients from all over the city. We accepted clients within a catchment area. We would try to help them. People tried to help each other out if they could.
Jacobson
What I wonder is where did you find home care attendants?
McQuade
They advertised, word of mouth. Largely, in our home care program, you had--the city expanded our caseload. If you were doing a really good job, they would ask you to take on more cases. CIDNY got their caseload expanded. I think our caseload was larger. We had Russian-speaking people who were getting attendant care, so we had Russian case workers. We had people from the islands, Jamaicans, Haitians. Largely your home care workers will be people from the islands. In Brooklyn. Brooklyn and Queens are two of the most diverse places in the United States, ethnically diverse. So, you would have some Hispanics. We had Russians. We had a lot of people from various islands. You name it--Jamaica, Grenada, all over the place.
Jacobson
Did they get benefits?
McQuade
Yes, yes, they got benefits. Allen and other directors of the city home care agencies formed an association, so they would advocate for more money, if they felt they need it, or benefits and things. They had a health care program; they got vacation, paid into Social Security and all of that.
Personnel probelms, potential fraud, screening and training home care attendants
McQuadeJust to digress for one second, it's a tough business. You really have to watch out for people pulling things, for people doing dishonest things. You had people, sometimes, where they would tell the attendants if they gave them money--especially when you have different languages going, and you don't speak that language. Sometimes it's like, say the Jamaican case worker, his word of mouth goes out to a community, "Oh, they have jobs here." Maybe the worker says, "You pay me this much, and I'll see that you
You have the director, like Allen was, and then you have the director of nursing. So you have the case where the person is approved for so many hours, you get the M-11-Q and then you have to see if you agree with the hours, or do you think this person needs more? Because sometimes when you go out there and what the form says and what you're seeing, there may be a need for more hours or more services than what we can do. You had to fill a case, I think, within--I'm pretty sure it was--seventy-two hours of getting it. It's one of those businesses where--and there's been different places where the fiscal director absconded with a lot of funds. There's been cases where people--Allen and the nurse [Ledora Walker] who was in charge when I was there and then she died and another nurse took over, they were very, very observant, very careful. It's not to say even being as careful as you should be something couldn't go wrong, but you'd have to watch.
If you got a complaint, only certain people are getting jobs. All these people register with you, but only certain people are getting jobs, you have to investigate that. Make sure that nobody's getting paid under the table, and this group of people are working and this group of people don't get jobs. There's a lot of room for fraud in these things; there really is.
Jacobson
How would they screen?
McQuade
They eventually got a--I forget if it was a fingerprinting program--but eventually what they did was, there's a way to check if there's a criminal record or something. I'll ask Allen. Anything that you would actually need later on, you'll tell me, and I'll get more information. They set up a bank of information where if somebody had done something terrible or something, you would try to weed them out. Then, the normal process, the person would be interviewed. There's a training program that they had to go through. They have to have a basic understanding of English, because the forms have to be filled out. Unless you're dealing with a Russian caseload or somebody Spanish-speaking, people mostly will be speaking English. They did scenarios, how would you handle this, how would you handle that? There wasn't just training on proper lifting, what you can do, what you can't do, all of that. It was a very thorough training. In the sense of, as I said, the sensitivity training, and all of that, which they emphasized. I have to say, the home care program it was very well run, and we didn't have--you always get a complaint, but we usually were able to resolve it. Knock wood, we didn't have any kind of big scandal or something.
Secretary of the Board of the National Council on Independent Living [NCIL], working to pass a new state building code, External Vice President of NCIL, overseeing the legislative committee
JacobsonOkay. Are you ready to move on?
From what I'm doing now? Or move on in your questions?
Jacobson
In the questions.
McQuade
Sure.
Jacobson
If you think of anything, you could throw it in at the end. Can you talk about what you're doing now?
McQuade
Sure. First of all, when ADA passed, I was on the NCIL board, as I told you. I was first the secretary of the NCIL board.
Jacobson
What does NCIL stand for?
McQuade
National Council on Independent Living. What we did was, for our center either a board member would come with me, and maybe another staff person sometimes, we went to the NCIL meetings. We went to our state association meetings. We would have a legislative day. A lot of our efforts, it's either for particular pieces of legislation like polling access, or having accessible mass transit statewide, the requirements that, you know, we had in the city. Issues like that. Or building codes. We worked on changing the city.
The state building code was changed in '84, and it was a very good building code. It required adaptability rather than that two percent of the apartments are accessible. Then we worked on--the lead was taken by Ann Emerman, who was with DIA, and Terry Moakley, from Eastern Paralyzed Veterans Association. But in 1987, we passed a new building code. All of us did the support work. The centers, we were all working together for the same thing. Then, our building code was in compliance with the state building code. New York City has its own building code, and that meant that universal design would be used in apartments and all.
So, I worked as a secretary for NCIL. The external vice president resigned, I think it was. We had two vice presidents, external and internal. One of them oversaw the legislative committee.
Jacobson
That was?
McQuade
That was--
Jacobson
External?
McQuade
I believe that was external. When this person resigned, I was asked to become the external vice president, I think. I think that's what happened. So I oversaw the legislative committee. One of the major functions of that committee during the time I was on NCIL was to pass the ADA. NCIL also worked on the Air Carrier Access Act, the Fair Housing Act, and our center being a member of NCIL supported all this and worked on it locally.
We would get legislative alerts and you would follow through on what the legislative alerts were. For ADA--Fair Housing, and also Air Carrier Access Act, you would be responsible--like, once I was overseeing the legislation. I would have to see that the alerts got out all over the country, and see that the alerts got out in our state.
Executive Director of Brooklyn Center for Independence of the Disabled, Inc., 1984-1992, the challenge of Expo '91 and learning to delegate responsibilities, the drawbacks of having numerous centers in New York and the need for one corporate structure, pros and cons of working "inside" the system
McQuadeNow, when ADA was being worked on there was a state coalition through the Independent Living. I think it was called AILCNY, Association of Independent Living Centers in New York. There are two associations now. There was a conflict, and now there are two state associations. At any rate, I worked on this. I loved advocacy work. I did the administrative work of our center. After awhile, when ADA was passed, I started to really burn out from being the executive director.
Jacobson
You became--
McQuade
Right. I'll go back a little bit. First, I was the only staff person, so I was a program coordinator. Then I became a program director or manager--one of those titles--as I had staff to supervise, rather than it being all my job. Then I was the program director after a while. Then we had more staff. We had a housing counselor; we had a benefits counselor; we had a clients assistance program. At any rate, when our director left, I think I became director in '84--when she left, to have her baby, she talked to me about becoming the director.
I wasn't sure at first, and then as I was explaining to you, I just felt--. When I worked there, Susan handled the fiscal stuff, and I did the program stuff. It's not that we didn't--and Susan wrote the grants, and I would supply certain parts of the grants, but I was really afraid of the fiscal stuff. So, what we decided was that we were going to get a part-time, either a part-time or we were getting a bookkeeper type of person. What I did was, I decided, "I'm going to try it," for the very reason I said to you. I had my idea of where I wanted things to go, and I would hate to be under somebody who had a different idea, and be kicking myself saying, "I could have done this." So I felt it was time, give it a shot, it's scary, but give it a shot. If you can't do it, then they'll get somebody else, but at least you tried.
What Susan did to me was really for my first year as director, she mentored me in the fiscal stuff. I'd come over--now, we had somebody to do the payroll. That was biweekly. We had somebody doing that. What we found out, we always had audits done. It was required by the state, but we had it done anyway. [Interviewee Note: I think we did quarterly audits, but the state only required annual reports from an auditor.] What we found out was--this guy had said to me--he was a student, and when you're a student, you get exemptions as a student. So, what we found out when our auditor came in was that he was not a student. He was giving himself exemption, and we had underpaid FICA, because he had underpaid FICA, and we matched FICA. We had
You are just much more careful, or making very sure that you're legitimately doing something. At any rate, from '84--sort of like the summer of '84 to 1992, I was director. Our program continued, not in leaps in bounds, continued to grow. I was a lousy fundraiser. I wrote some grants, and one of our other staff members wrote grants. We got some monies here and there. I'm just not a great fundraiser. We tried, for a short period of time, we tried having one. We did a really nice job on the expo, because we really brought to the fore ADA.
Jacobson
What expo?
McQuade
It's in my resumé, the expo that I sent you, the year. I believe it was Expo '91. ADA passed in 1990, I believe it was Expo '91. We had a marketing person. We got a grant from the Brooklyn in Touch and from United Way. It ended up costing the board like $7,000 which we hadn't planned on, but they were so pleased. Everything else, it almost sounds like a pyramid thing, but money came in for this, you went the next step. Money came in for that, you went the next step.
It was a terrible year though, because the state was--our person who oversaw us and her boss were very nervous about us being able to carry this out, so they would always be calling me, and it would be like you were always under the gun worried that they were going to tell you, "Stop!" We did it at the Marriott. It came off really well. Ann Emerman got us Mayor Dinkins, and he came. He gave a speech. Justin Dart came in. He was a keynote speaker.
I forget the exact number, but we had eighteen or twenty exhibitors, and we did presentations on--the idea, what we hoped to have happen was, we would be seen as an agency for small businesses to come to for ADA advisement, and we would eventually have a fee-for-service. There was a plan; it wasn't just to do a one-time thing. We were going to do this, hoped to do this again. But this took so much out of me personally, and out of our staff, because we had to keep everything else going while all this was added onto us. I said to the board, "I can't do this again. I will be divorced if I take this kind of thing on again, and the staff is exhausted."
Part of it was my fault, because I feel I didn't devote enough of my time to--we hired a fundraising person who--she didn't stay long, and she wrote boiler plate stuff for us, but we got nothing. I'm not knocking her. The problem was that I was so involved in day-to-day administrative and personnel stuff and doing community stuff, that I wasn't giving enough time to really get across to the person the uniqueness of what we were doing.
At that time, you were married?
McQuade
Once the expo was over--I normally worked very long hours, but I wasn't doing like two o'clock in the morning. What happened was that I learned more about delegating from the woman who was my second-in-command. It was like I had two codirectors; one who handled the day to day program stuff, but I still had a lot of involvement in that, and one who handled the administrative, Gil Yildiz. She's the director for the Albuquerque center, and for a time, she was the assistant director in Queens. First, she became director in Brooklyn--and no one who knows Independent Living will be surprised at what I'm saying--she just found it too draining dealing with our board. Not all the boardmembers. Boards sometimes involve themselves too much in day to day stuff, and very rarely do--. If you talk to most of the directors, I think you would hear the same thing. Very rarely do they do the thing which you really want boards to do, which is do fundraising. They'll do policy, but they don't do fundraising. It's very hard to get the kind of people on your board--we can have fifty-one percent disabled, not everybody has to be disabled. But to get the kind of people that you need, who are committed to what you're trying to do, and have connections, it's just been desperate.
I've said this before, and I was saying this to the director at the Staten Island Center--she's on paratransit's advisory committee--I said, "The issue is, in New York City"--Gil came up with this concept, and she's right. I used to feel after awhile, we should be buying our supplies together to get better deals and all of that, but in reality, in New York City, you cannot have all these separate boards. Six centers in New York City. You've got Staten Island Center, Brooklyn Center, Queens Center, Manhattan Center, and a Harlem Center, and the Bronx Center. You've got six centers all vying for the same pot of money in New York City. It is a disaster.
You need centers in these areas, because it's a big city, but what you really need is one board, an executive director for all of these, and each center has a--not a program director, a borough director, or a center director, with an executive director for overall--. Now, they tried different things. They tried coalescing. But not having one board, coalescing on activities. Like they did the torch ceremony. It was wonderful, a wonderful day.
Jacobson
On the anniversary of--
McQuade
Yes, of the ADA. It was a wonderful event, wonderful. Whether they made money out of it, I don't know, and I would doubt it. But what I'm saying is that I do not see a future for our centers in New York City--I'm not talking about the state--if they don't come to terms with the fact that they need to be under one corporate structure, get a really terrific board. Then you get the cream of the crop of disabled people on your board, because it's not like, "Oh, I'm in Manhattan. I don't want to be on a board in Brooklyn." The board represents all of them, but I don't see that happening.
Jacobson
What that brings to mind, is what I remember Judy saying at the first DIA meeting, although it was about disabled activism. She always says that we better pull together, because if we don't everybody gets a small piece--
McQuade
Of the pie, yes.
--of the pie. When you band together you get more money and then you can keep--
McQuade
I think what you have is--I'm not knocking anyone, but I'm saying that I think what's gotten in the way is turfism. I think people--and these are people who are struggling. The Staten Island Center director said to me, we had a closed meeting of the advisory committee yesterday, and she was saying, "Do you miss being a director?" I said, "No." I said, "I miss the ability to take on issues and fight for them." You think this is an important issue; you go to your board; your board agrees with it; you can just go with it. You're not in a governmental structure where there are certains things that you as a governmental worker cannot do. You can say things internally, but some things that you can say internally cannot be said publicly, right? Whereas when you're a center director, you can say what you think. As long as your board supports the position, you basically can take a position and you can oppose people that you maybe--Not everything is in opposition, but you have more freedom of picking the issues and going with them in the way that you think they need to be dealt with. Whereas, when you're inside, there's advantages in one way--I'm going to go back before I end, like how I ended up working here.
The advantage is you really get to learn how things actually work, and all of the different forces that have an effect on things, because things don't happen in a vacuum. Internally, you can say things because you're not the outsider, but again, if what you're saying, there are other reasons for people to be opposed to it or not do what you want, that's it. So you need both; you need people inside, and you need people outside. What I don't have to deal with anymore is, I don't stay awake at night worrying about whom am I going to have to lay off? What am I going to have to cut out? Because they just got a cut. Not just that they didn't get a raise this year in Independent Living, they got cut. So that kind of stuff is always agonizing, and when you're a smaller group, you know the people pretty well. These are not some cogs in a wheel that you're firing. This is somebody that you may have been working with for years and years and years. Not that this doesn't happen in other places. It's easier to fire strangers.
The only thing that I was saying is, I don't miss the personnel stuff. It's draining to anybody in any entity, but it is especially draining in a center. The personnel stuff is difficult. And you always hate having to hire new, because it's always so hard to find somebody. That's really difficult. Then you've got more work than what everybody can handle, and yet you're responsible for meeting goals that you set up. I'm going to backtrack for a second.
Appointment to the transportation disabled committeee, developing paratransit service and making mass transit accessible, the issue of securement on the buses
McQuadeHow I came to work for New York City Transit, that's another experience in my life that if somebody said to me, "You will end up working for New York City Transit," I would have said, "You're insane. I will walk before I'll be working for New York City Transit."
Jacobson
I was very surprised when I found out.
Right. You were not any more surprised than I was. We spent so many years really in opposition to the transit authority and to the mayor a lot of the time, during Mayor Koch's time, over this whole issue of an accessible system. Before ADA, and before I left the center, when the lawsuit that EPVA brought, which was combined with DIA's lawsuit, won, under the state law, the state building code, there was an agreement worked out to create a small paratransit service, to make sixty-five percent of the buses accessible, purchase new vehicles and all of that, and to spend forty million on subway access. An advisory group was formed. It was called "The Transportation Disabled Committee." Myself, Terry Moakley, were asked to be members of the committee. The way that was structured, the state got to appoint certain people with the agreement of the mayor, and the mayor got to appoint certain people with the agreement of the state. Then there were ad hoc members like from the Department for the Aging, both state and city, the Department of Transportation, state and city. I forget who else.
When this committee was formed, and the director for Mayor's Office of People with Disabilities was on that committee, that was Carol Roberson, she was very good. There were a few people who would not have been my choice to be on the committee, but we basically had a very good working group. I don't know if you knew Julia Schecter. She died about a year ago or so ago, maybe two years now. She was with the state advocate's office. She was very good. She was ex officio. We had a really good group of people. We had to develop a paratransit service, a plan for a paratransit service, oversee the buses becoming accessible, oversee the subways, choose the subway stations out of a list.
Jim Weissman always says, "It was late at night and everybody threw in a station in their district." It wasn't necessarily that this is the best station to do. We worked on that; that plan was finished for the paratransit in 1990. The funding was basically out of a mortage filing tax, so there was very little money to go into paratransit. I think you had twelve million dollars for a year to service New York City. [laughter] It was very interesting, very fulfiling, very exciting times. I found it very fulfilling to work on that.
So, at any rate, and then work on ADA--
Jacobson
By the way, do you have any estimate as to how many disabled people there are in New York City?
McQuade
The old census, the one previous to this, the 1990, I think using their percentage, it went anywhere from sixteen million to seventeen million in the country. We had about one million in the city, and something like two million in the state. The new census, I don't know. I would doubt that that number went down because of the aging population. These may be individuals who don't identify themselves as disabled, but rather elderly, but in point of fact, I would say those numbers went up.
Jacobson
I was just curious. Go on.
McQuade
With systems advocacy issues, we [BCID] were very big on the transportation. We worked on national health, whatever the bill was at the time for national health. We were supportive of access to polling places in our city or state and all of that. Different people sometimes took the lead and then you followed. You did what was necessary; you went to hearings and all of that. We supported, as I said, the Fair Housing Act of
1988, I think it was. What was the other one? Fair Housing Act, Air Carrier Access Act, and all of that. My years on the NCIL board were very fulfulling, very challenging, because there was so much work; there really was. It was great to meet people from other parts of the country, kind of share what everybody was doing. Some places were more sucessful than others, obviously. June Isaacs Kailes?
Jacobson
June Isaacson Kailes.
McQuade
When she worked at the Los Angeles center she just had a fabulous ability to raise funds and everything. We met very good people. Gil got involved in NCIL also. Marca Bristo, I got to know Marca. There were a lot of different people.
Jacobson
Do you know Max?
McQuade
Yes, Max Starkloff.
I was in St. Louis to do a presentation on safe securement of wheelchairs and scooters on buses and paratransit with my immediate supervisor, and we had the pleasure of riding on the accessible train from the airport to the Union Station hotel. It was great. It was very inexpensive. I carried one bag. My supervisor, when we were going back, we had one more thing, and she carried it until I jumped on the train and got off. I have to say they were some of the friendliest people, the St. Louis residents. They were very friendly on the subways and everything.
We went to the St. Louis zoo. The access there is very good. The hills are a little--it's hilly--pushing yourself, there's spots where you need some help, but someplaces where you can just go along. On that little accessible train. If it gets past all of our editors. I do the newsletter for paratransit and ADA stuff, so we took some pictures of showing how I was secured and the train, and I got the names of the people, so we're going to try to get that article published in our next newsletter.
But what I was saying is that the buses, there, the disabled community wants to be secured. They weren't good at securing. I spent a lot of time on securement on the major buses and our fixed route buses and our paratransit. It's an issue all over the place. We had probably approximately thirty people in our workshop, which is a good number of people. We brought the videos that we did, we made with some of our customers, how to be secured on the fixed route bus, how to be secured on paratransit. We brought those and we were talking about that whole issue. And it is an issue. People, the drivers--in different places, the disabled community wants different things. The issue of being secured for me, you need to be secured.
I've been on the bus where somebody pulled out--this was just a year ago--and I sprained my foot, because my chair was secured, but you don't have to wear the seatbelt shoulder harness on the fixed route bus. You can choose to or not; that's in the ADA regs. I didn't have it on, and the bus driver had to jam on the brakes. My cushion slid, I slid, and what I did, my foot was down here, and it pushed my foot all the way up. I knew it was sprained. They offered to take me to the hospital, but what are they going to do?
Jacobson
What are they going to do?
It's sprained. I've had sprains before, there's nothing that a doctor can do except tell you what to do and you follow the instructions and eventually the sprain heals. Sitting around with ice bags on my ankle at work is what I did.
At any rate, it's important, because also we have new buses that are front loaders, and there's some difficulty with that for some people's chairs. We're having a new thing in our city. We wanted to come on the front of the bus when we were first advocating. The front loaders, they were Grumman, there was a problem with their design and they didn't work well. So, we have what we call "rear loaders." They're at the side door.
Receiving training in implementing the ADA and training others, a complaint from the state, experiencing burn-out
McQuadeWhat I was saying was I really wanted to work on ADA implementation. I had burnt out on doing the administrative stuff, and personally I wanted to focus on ADA implementation. It was hysterical.
Jacobson
Let's--
McQuade
--stop the tape. Okay.
As I was saying, I had been doing, as was required by our training that was provided by DREDF and the Department of Justice, and EEOC, there was training number one and training number two. I was at both of them.
Jacobson
EEOC?
McQuade
Right. Equal Employment Opportunities Commission, and Disability Rights and Education Defense Fund. They had gotten a grant, a contract, to provide ADA training. I think the first training, they covered everything, but it was like Title One and Transportation, and the second year--I think they covered everything, but the second year they went into greater depth on it, and the focus was probably on some of the changes as the regulations were coming out and everything. But it was part one and part two, and I had the opportunity to go to both of them. Your obligation for being trained was to train others. Trainers to train people back home. So, I worked with Terry Moakley and Harilyn Rousso to do ADA trainings. We each took a section or sections, and we did ADA trainings throughout the boroughs. I think we had a pretty good turnout.
The second year was like '92. This is where I'm blanking for a minute. I'm trying to remember if I worked with Harilyn and Terry both years, or if it was the first year I just did it with Terry, and then the second year it was with Harilyn and Terry. I'll have to ask Terry Moakley; it's really awful.
At any rate, I was doing that, and I was over at Eastern Paralyzed Veterans Associations. We were meeting on something--this is how life is--and I get this call, and it's from the state. Some judge from family court had complained to the state about our agency's, about our handling--of this case. I was just livid, because this judge, it was sort of like shifting the responsibility. We don't have housing. We tell you how to apply for things. This consumer who had been referred to the center, I guess by some social worker with the court or something, missed two appointments. There were a number of things. It wasn't really that we weren't doing what we were supposed to do. Here's what we do, here's what happened, and she's blaming us because everything hasn't been resolved for this person and she's calling the state.
So I said, "Look, I'm not at the office. When I get back"--I wrote a letter. You know how you draft letters? The first draft, it should have set the paper on fire. I was really furious. Then I had Michael Levy--he actually works with me now--we work together, he's the director of travel training. He's blind, and he had been our assistant director for the programs, the services part of it. Gil was handling the administrative part of it, the stuff that I wasn't doing. What I made sure, really, was that I wanted to be sure that there would be someone in the center that knew the fiscal stuff backwards and forwards, who would not have my nerve-wracking experience of having to learn it while I did it. So, Gil was the one that really wanted to do that, and she was the most knowledgeable on the computers and stuff. She had it all down pat. She knew how to do the reports. She knew how to look over the reports on our different grants, and how to do the budgets and all that stuff.
At any rate, I got this thing [phone call] and I said to Terry Moakley, "Terry, I have had it. If you know of any job, any job whatsoever, let me know, because I cannot do this any longer." He said, "You know, I think they're still looking for an ADA person at New York City Transit." The irony was the ADA compliance person--we were on the same side of the street as the Transit Authority, our old center, which I moved further out in Brooklyn to save jobs. We used to be on the same street. Before we moved, the year I left the center, I had moved it a few months before I left. When we were next to the Transit, he had come over one day and said, "We're looking for people with disabilities," and he gave us each the job description. Mike and I said, "Okay, we'll share this with our community," but I wasn't thinking then about leaving the center.
With moving the center, Gil and I had found other space. What we did was, with our home care program, we had to stay within their catchment area, but we moved out to--you don't know Brooklyn, so this won't matter to you--we moved out into their catchment area, found space that we could share with our home care program. We shared a conference room and we shared a lunch room, so we got bigger space for less money. We had been paying twenty-five dollars per square foot. We got it for thirteen dollars per square foot. I didn't have to--
Jacobson
Where?
McQuade
We went from downtown Brooklyn to Avenue P in the Midwood section of Brooklyn. Nice area. It had one elevator. We had been looking for two elevators, because every time our elevator went out, we ended up being carted down four flights of stairs by the Fire Department. Or, I was working outside the building because I couldn't get up, and they would be running up and down--those who were ambulatory or nondisabled would
We found space. You split it on your contract. The things that you're sharing, you split the cost. The way we did it is we loaded--we didn't have money to pay for the renovation, so what we worked out with the landlord--I think we had either a five- or a ten-year lease--we worked it out that he would share--the cost would be amortized, I guess is the word, over the ten years. So, each year the rent would go up a certain percentage. That's how we did it.
At any rate, I had just gone through this big move. There are things that happen, and you know you're burnt out. When we moved, it was such nice space in comparison to what we had. We're on one level. We only had one elevator, which did break down the first week we were there, but it was three steps to come up rather than four flights. It's easier to get help for that. At any rate, the first day we move in, someone's complaining about the paint is affecting them. Honestly to God, I had to close my door. I said to Gil, "I can't fucking believe these people!" It wasn't everyone. [laughter] I said, "We've saved their jobs, and everybody now has bigger space!" You know when you move what it's like. I was down measuring. Of course, we had a person design the space, and some things didn't fit when we got there. Who wants to measure? There were people who volunteered with me, and we spent until eleven o'clock at night, from eight thirty in the morning to eleven o'clock at night moving this, getting the phones set up, when things went wrong, "It'll go here instead of there." It was clean. It was nice. It was new, and I said, "I don't believe this! What, in God's name, can you do about the smell of new paint? It's paint, there's a paint smell." If this was a person who had a respiratory condition I would say, "All right, go home, or whatever," but this was just "The paint smell is annoying me," or the fluff from the rug. It was like I wanted to just beat my head against the wall until I became unconscious. It was things like that.
You know you're burning out, because people are people, and this kind of stuff will happen, and I was just finding myself getting so frustrated dealing with this. And saying, "This is my life?" At any rate, this one complaint that we got, the stuff that was happening, and I said to myself, "I'm burning out. I have to look for another job." Terry mentioned this job, and I'm saying, "Okay." The guy who ended up hiring me--
Jacobson
Where was Terry?
McQuade
Eastern Paralyzed Veterans Association is in Queens. It's at the Bulova Center. That's what this office is called. They moved from Park Avenue South to Queens.
Jacobson
Was that like a recreation--?
McQuade
They have a gym in there for the peole who work there, but it's an office building. They have parking around it. They lucked out with finding this space. I think there was a Bulova bowling team or something. I don't know. There was something.
Jacobson
I think that there was a sheltered woodshop or--?
Yes, I think there was. Because there was even a fine finger dexterity test when I was in rehab school, that was like a Bulova test. I couldn't do it. That's why I'm not a watchmaker.
Working for New York City Transit in the ADA Compliance Office, conflicts between the transit and the disability commmunity regarding issues of compliance
McQuadeSo, here I was, burning out, and feeling it's time to move on. Terry mentioned that job, and I said, "I think that's the job--this person came over from Transit to have us disseminate information on it when we were next to the Transit Authority." Sure enough, it was. I called up, I submitted my resumé, I got interviewed, and I got the job. Almost nine years later, here I am. I started working for the ADA compliance office. There were things that I knew, like about communication access. It's funny--that was the other funny thing, we were doing a presentation on ADA at the Bulova center, and I had just been hired, but I hadn't started yet, and my new bosses came to see the presentation. I was so nervous. It was like, "Oh my God, this is going to be so difficult." You haven't even started the job yet, what if you blow it now. It's been a trip. No one could have told me I would have worked for Transit.
The point I was making before in talking about the Transportation Disabled Committee from working on that committee with Transit people, we had really formed a good working relationship. That sort of continued on. With ADA we really tried to--one of the reasons I was hired, obviously, is I've been an activist. My boss, I think I told him that I had been in a sit-in at the MTA, and I had held up a bus. I think I told him that. I think on the interview, when we were talking, I didn't want him to be surprised, because there would be people at the Transit Authority who actually knew my history. It was very funny. So I got hired.
Somehow The [New York] Times was doing a story on disability rights back then and where it is now, so I got interviewed by The Times. The then president of the Transit Authority asked me to come up and see him. I certainly noted that I never expected to work for the Transit Authoriy, but over the years, we had developed a working--Terry, all these people that were major activists, EPVA had sued the Transit Authority--we had developed a working relationship. It was coming into a huge bureaucracy. You go from a center of twelve people to a 48,000-employee employer. It was a change in a lot of ways. But it was good. I got to do ADA complaince from almost square one. They had done the transitional plan before I got there, but I started working on a brochure to inform the employees of their rights as disabled employees, and make the nondisabled employees aware of ADA responsibilities.
It was interesting, because we were reaching out to the community. We started a newsletter. I also really had information to share with them, because they understood what needed to be done physically with the subway stations and all that, because they had engineering backgrounds and all that. We had an architect, several engineers in the ADA group. What I brought to the office was the employment responsibilities, the
It's been a very interesting time. I've enjoyed working there. I've also been frustrated working there, because sometimes things happened that we ended up in a conflict with the disabled community. One example--this people know, so I'm not speaking out of school--we had purchased buses, and we kept hearing from people in DIA really, that the buses were not compliant. So my boss brought a bus; we had a meeting. We used to have these quarterly meetings with the community, but we also had these internal ADA meetings to make sure everybody was doing what they were supposed to do in all the departments and all. So, they brought the bus; I tried the lift. This woman who was talking to me, it wasn't clear exactly what the problem was, because they have to be compliant. The company had said they were compliant. I think they were our TMC buses, or the Nova bus. At any rate, when I tried the lift, I said to my boss, "This is very steep." I said, "I think she's right. I'm coming down too fast, and it's hard going up."
So we were out in East New York, that's one of our depots. We've got lawyers. We've got engineers. We've got systems safety, and we're trying out--I'm like the crash test dummy--we're trying out the lifts and everything. Everybody's looking at it and all. They were right. We had to get that company to retrofit several hundred buses. One of the things that happened was we had been meeting with the disabled community. A lot of this was DIA people. We had met, and what we had worked out was we were going to have to retrofit the buses. We asked the community to basically have patience, because we needed a certain amount of time to do this, but what was happening was the retrofitting wasn't happening that fast. We're getting towards the winter.
We had also gotten a promise from the Department of Buses--we were ADA; I wasn't in Department of Buses then--that, if anybody had to wait more than thirty minutes for a bus--the buses come with certain headways between them--that they would adjust that, and then we're getting complaints as the weather is getting bad. People are waiting more than thirty minutes, and they're upset. We kept saying--myself and this other disabled person who worked there--some of this may have to wait for ten years to come out. The community needs to be told about what we're doing to correct this. Basically, they were writing letters to the disabled community from our group. We weren't asked to do the letters, I knew and this other disabled person knew, these letters would not satisfy anybody, because what they [the community] were asking for was time frames. The Transit people were feeling that they're trying to trap us into something that we couldn't commit to. What our people were really saying was, what the disabled people were really saying was, "We were told this, but this is what's happening. Now this much time has gone by. We want to know when this is going to be done."
We wrote memos to our people in our unit saying what we thought. These are not bad people, but they didn't take our advice. We're hearing that there's going to be a TV [laughter]--Arnold Diaz was going to take this up. Sure enough it ends up on TV. Unhappy people complaining about--. Really, that was the other thing; they [disabled advocates] wanted to do something nice about transit, because our boss, Walter Noonan, was a very nice and decent guy. He made the commitment in good faith, but the headways--it was getting colder and people are waiting longer. We said, "This is going to escalate." Buses were held up in Brooklyn. There was more TV coverage. Everything
So that kind of stuff is extremely frustrating, because we work for you. You hired us because of our expertise in this area, that we know people in the community, that people will tell us things that maybe they won't tell you. That was a frustrating moment. It all did get worked out. They were repairing it. Our office needed to light a fire under the Department of Buses, and once it was given a greater priority the repairs were made more quickly. But it took that.
Jacobson
When you talk about the disabled community, who does that consist of?
McQuade
It varies. A lot of times, it's DIA members. I mean, what's been kind of disappointing to me over the years, that the centers weren't as active as I felt they should have been in some of these issues. But then, a couple of years back, people from DIA, people from the Brooklyn Center, the Queens Center came aboard, I think, eventually, Bobbi's Center, I forget about the Manhattan Center. This is current, but I just have to see who came on. Basically what happened, there was some reports by the public advocate about some of the problems with Access-A-Ride. There was an advisory committee, paratransit disabled committee.
This again is my opinion; people might see this differently. I felt that the advisory--this is not everyone on the committee, but when you would raise issues, it's your job to make sure that the things that you're raising are followed up on. By that, I don't mean that you wait until the next committee meeting. You write a letter. You ask for time frames. Some of the information that people would ask for wasn't provided, but it's up to you. This is not a course in Advocacy 101. You are in the advanced course, as far as I'm concerned, for many of these people. I think what happened was--what did happen, that's an opinion that sometimes the community has not followed up the way it used to follow up or needed to follow up. The squeaky wheel does get the oil. There's so much going on and so many different issues, that things can get lost in the shuffle without people intending that to happen.
The accessibility of the buses, improvements implemented by New York City Transit
McQuadeThat's basically some of the difficulties, but what I have to say is that you'll never satisfy everybody on the service, because there's just too many things that can go wrong in it. Customers don't come down on time. Drivers don't go to the right spot. There are so many factors that can cause problems. You can make it better, but you'll never totally make it--because it's not your own private car service.
Jacobson
I would imagine that most of the buses, the public buses, are accessible.
McQuade
They're all accessible. All over. They're all accessible.
In every borough?
McQuade
Every borough.
Jacobson
Every?--
McQuade
Every single bus in our system is wheelchair accessible, two wheelchair positions. Every single bus.
Jacobson
How about the express buses?
McQuade
All accessible. You may not recognize it, because it's not like a door, it has to open up. This is where we are. They've been putting the express--my express bus has not been this new, over the road bus yet, and it's going to be a disaster for me when it happens, because it's a different system; it's a bigger, higher bus. So it's a different operational system for the lift and the seats.
Jacobson
Could you tell me what the express bus is?
McQuade
Okay. You'll see a bus, and it will say something, "29," "b29." What it means is, this bus usually doesn't have all the stops on a route. It has certain stops, and the bus is inter-borough, usually. It's usually an inter-borough bus. You'll have Bronx buses that are express buses, and they'll pick up people at certain stops, and they'll make certain stops in Manhattan. Some of them may duplicate a subway line. They usually have more comfortable seats. They're more expensive. It's a three dollar trip. Transit workers get free transit on regular buses and subways, not on express. We have to pay for the bus.
There are express buses that are not over-the-road. Over-the-road will look like your Greyhound or your Trail Ways. It's a higher bus. The lift is not in the front door where the pasengers walk on. It's a little bit down from that, but it's not what we call the rear of the bus, and it operates differently; the seats have to fold over. Anytime we have new equipment that is a different operation, a different way of doing it, the drivers, we get more complaints, because the drivers have to learn a new thing. Until they get it down pat, and they do get trained and everything, and if you complain about a driver, they will retrain. Just from talking, I know this from--anytime they get a new system--it's like when the buses became ADA compliant, there was some trouble, because they have fail safe devices in them. On some of the buses, there was a sensor, if the driver leaned forward to do something, it triggered the sensor, which stopped the lift. It's a learning curve. This is not trying to cover up anything or make excuses; it's just that as we get more of these new express buses on, there are going to be more problems for the rider until they really get operating that particular bus down pat. Because it's a different operation.
Ours, you come on, you flip up the seat. You've been on them, so you know how they operate. This--it's like the door--you wouldn't recognize it's a door, because when they were first putting them on in Staten Island, someone I know in our office who's disabled was saying, "Those buses are inaccessible," and I said, "They can't be. They can't purchase them inaccessible." So I called up, and I found out that it's because you don't see a door. The driver gets out, he has to pull a thing, it opens up, he has to fold these chairs back. It's more complicated, and until they learn it, it'll take a little longer.
What I wanted to finish saying is that, we are in--from where we were three years ago when people were justly critical of some of the things in paratransit, we are light years away from that. Zero denial rate, we added on more buses. Every complaint that--they wanted better air-conditioning. They wanted better heat. They wanted grab rails--they wanted a grab rail here. Everything that we could do. They wanted more leg room for the ambulatory. I went on the paratransit bus purchases. They incorporated anything that they could do that the passengers ask for. Then we had the paratransit committee try it and everything. It doesn't mean on our rides these won't get bumpy, because people were complaining about bumpy rides, and some of the roads were horrible.
They put in a brand new--what is it called? It's called a granny. It's a brand new--you know the springs we have in our cars? What are they called? Shocks. Brand new. They were used on ambulances. We tried it. The new people who came on in paratransit are new--we put a vice president in charge of paratransit--and she, Pat O'Brien, and this other general manager, Jimmy Wilson, who came with her, they really reorganized things. We contract the service out, but they got better vehicles. We have more staff to go out and look at--. If we get a complaint--maybe not one, depending on what the complaint is--but if they're complaining about a particular driver, we'll send staff out to observe. We have staff that can go undercover. The carriers that we hire, they also have staff. They really, really are trying to follow up on everything that they can follow up on. It's not going to be perfect, because we have areas where, with the Nextels the driver can't hear the dispatcher, and he can't hear the drivers that won't answer it. They're calling for--in the trade--say you miss your pick up; we won't strand you, but it may take us hours to get to you. We're trying to add you on. It's called an "add on." Drivers don't want add ons. They don't want to take anybody more than what's theirs, so some of them won't answer the Nextel. We don't have a way of knowing you're deliberately not answering it. The future--what they hope to do, but it's down the road, is get interactive voice response. One is global positioning, so that they know where you are. It's through the satellite technology and all of that. The other is interactive voice response.
Customers now--we will do outside door to outside door, even though ADA says curb to curb. We have a thirty minute window. Customers don't like the fact that they may have to wait for thirty minutes, and we still don't come. Then they go up to call us, and then they come, and we miss each other. We don't have a resolution for that. So, with an interactive voice response, it'll be real time in terms of the information. You can call and say, "My ID number is blah, blah, blah. How far away is the vehicle?" and they'll tell you, "Ten minutes." You don't have to wait there for thirty minutes. You can come down in five minutes or something. That's stuff for the future. We don't know if it will get purchased, because first they usually pilot test something. There's been a big improvement. There are still a lot of complaints.
Reflections on changes in accessibility, portrayal of people with disabilities in popular culture, progress in attitudes toward people with disabilities
JacobsonI wonder, now that we have done the interview, looking back, have things changed? Have they stayed the same? What's your position?
There's more access. When you go out on the street here in the city, there's more curb cuts. Many of them are not perfect; there's not as many as there should be. You go to a restaurant, you can get into more places. You go to the theater, and they'll have a space for you to go. Some of the theaters have put in bathrooms, or they've made arrangements with the restaurants across the street for you to go to the bathroom if you want to. They have assistive listening devices. I think there is, without a doubt, there's much more--when you're going around and you're tryng to find a hotel room, you can get into a bathroom. If you're deaf, there will be a fire alarm that will be visual. For physically disabled, and for people with communication disabilities, you'll have plays that may be signed, tours of the museum that are sign tours. You can go on either/or, but they will have sign tours. There will be wheelchairs for people if they can't walk the distance. There's a lot more access. In terms of attitudes, I think there's been an improvement. When you look at when we're portrayed--I know people wrote critical things, like in WE Magazine, but when I saw Something About Mary, that was not--I don't know if you saw it?
Jacobson
No.
McQuade
If you get a chance to see it, see it. You may have a different take. But in this story, some people felt it was making fun of people with disabilities. I felt it's--when you can make fun of us, like you can make fun of anybody. If you and I were wheeling along, and we slipped on a banana peel and that was in a movie, I would laugh at that. It would just be funny to me. But in this movie, the woman who this guy is in love with, or these different guys are in love with, she has a disabled brother. He has probably mental retardation. I think that's what his disability was. It was something if you say something or do something, he gets all hysterical and screaming.
She loves her brother. He's with his family. There's one guy who's trying to date her. He's a really sleazy guy. He's talking about being with "the retards." He's being nice to get to her. They're playing a game of touch football, and he's crashing into them. It was showing a family and a person who really loves her brother, who has an absolute disability that is--it's not a hidden disability. She loves him. She wants him with her. She participates in the games and stuff. It's not condescending. But, people talk how they really are--this one guy who's faking that he's disabled, because she's so kind-hearted and so open to all this. This is the pizza delivery guy. This is a guy who's faking he's an architect with an English accent, and he walks on crutches. He's not really disabled, but he figures that's the way to get to her. That's unique.
This guy who wrote this article felt it was making fun of disabled people. I have a dark sense of humor, but what I always used to find horrible was when--you may have seen this movie. Natalie Wood did a movie, TV movie. She plays a woman who has polio. She's Natalie Wood. She's beautiful. She writes music. She's talented. She drives a car. She walks with crutches. She's Natalie Wood! It's like Marilyn Monroe with crutches and she's this self-loathing, neurotic person.
Jacobson
Right.
McQuade
Now, yes, there are self-loathing, neurotic disabled people. That offended me. I'm sitting there saying, "Why can't they show, for a change, just a person who's a normal disabled person? Who's not totally having her whole life controlled by the fact that she
I don't mind if nondisabled people play disabled people. I think that you want to have--because to me, acting is make-believe. You playing somebody with cerebral palsy is not an acting job. Me playing somebody who is in a wheelchair is not an acting job. Granted, if you're an actress, and you can do the character, terrific. It can't always be--you may not get the character right. I guess what I'm saying is I think there's more opportunities there. You do see people, like in commercials, just going by wheeling their wheelchair, or playing ball or doing something. That we never saw before; it would have to be a telethon. So I think there's more opportunities. I think the golfer--I was really so happy when he won that Supreme Court case.
Jacobson
Yes.
McQuade
I was talking about it with people, and I said, "Is golf about walking or is it about hitting a ball into a hole?" If it's about walking, then yes, we would have an advantage using the cart. But walking and not getting that ball in the hole is not going to make him a champion. I think that's a really good thing.
When those two women tried to be covered the ADA because they wore glasses, and one company would not hire them, I would have been appalled if they won that lawsuit. Not that something can't go broader than how you envision it, but when I was being trained on the ADA, it's not that you and I can't be a baseball player if something's wrong with our arm; it's that a whole class of jobs is closed to us with our disability without an accomodation. The cases where the fellow had high blood pressure and it was under control, that, by the training I received, he was disabled. I use a wheelchair. It doesn't mean I walk. It doesn't mean that. It ameliorates the condition. I don't have to crawl along the ground, but I'm not able to walk, and I'm not going to be mountain-climbing, though there may be some who do. I think those kinds of things.
Theres's one guy here in New York. He actually went to NYU and graduated before I did. He's a newscaster on Channel 9. He uses a wheelchair. There was a fellow who's also a newscaster, [John] Hockenberry; he uses a wheelchair. To me, there has been progress. What frustrates me is that, I really think where the emphasis should be now, and the negative side of the ADA, is, I think, some of the accomodations, that should be the government's responsibility. I think it would make the entry of people into jobs easier if a company--they can hire you, or they can hire--. I'm not talking about having an accessible building per se, but I think, when you have to come in, you don't discuss it in the interview, but people look at you and say--even though they don't say it, even though they don't ask you the wrong questions--they look at you and think, "Oh my God, I'm going to have to do this. Oh my God, I'm going to have to do that." When you don't have a hidden disability.
Looking toward the future: more governmental responsibility for ADA compliance
McQuadeIt seems to me the better way of doing this is with the concept of vocational rehabilitation, these are things that are disability related. These are where you want the rehab engineers, the communications people. You want that stuff to be: You come in. You get the job. These people come in, and they can do it fast for the person. The person doesn't have to sit around for months, not doing anything, while some company--and then this person negotiates with the VR agencies about who will pay for what. I'm not saying it doesn't get done, because certainly for Michael, they made accomodations. But if you have an agency that's responsible, and they have the experts there, and you know you're going on the interview, or say you're going on the interview and you're going to have to do something with the computer, and you need certain technology. Wouldn't it be better to have people that could come in and supply you with something that you could do it, rather than having to negotiate some of these things?
I think what I would like to see for the future, I would like to see some of this really techy sort of thing dealt with by the government. Employers, they can--they could lower this, they could lower that, but when you're talking about equipment, and you want the person to--frankly, in my opinion, have their own equipment. If I go to a different job, I should be able to take it with me, whereas if the agency buys it for you, that's theirs.
I also think, I realize it's not done differently in other civil rights laws, but I also think what we should be pushing for is a--we should be pushing for ADA compliance people. With this law, one of the difficulties is that it's very time consuming to fight every single--bring up every single empoyer--not employer, place of accomodation who hasn't ramped their step. We really do need--and this, in a way, it could be the role of the centers, if they had the right training, and they had technology people and all of that, to police--we need an ADA police force. I realize in every civil rights law, including the ADA, [we are it], but the truth of the matter is there is not enough time in the day to follow through on every place that you see that isn't in compliance.
I really believe it would also be good--I see this as an excellent place where centers could really be the focal point. Where they go out and do it. The place is made aware if there is any tax deduction. A lot of places are small mom-and-pop. The big places can do it. It's really hard for these people. They may not have the money to lay out initially and wait for the tax deduction. If there were ways of doing it--. I'm not going to try to solve this tonight, but I think that these are some of the things that we need to be looking at, how could we do this better, because we're missing opportunities. Things are not getting done that could be done.
It's not only physical things, but communication stuff. The technology is out there to make things much better, but it's got to be done with governmental help. It really does. It's going to take much toò long to do it otherwise. I guess I'm hopeful. I also think that this could open up areas of employment for people who have more severe disabilities, because the technology eliminates a lot of problems if you have the intellectual capacity. Often times, people do. I just think we need that momentum. We need to say, "This was our first shot at it. This was the best we could do at that time, but we think there's a better way of doing this." I think those are some of the things for us to focus in
Jacobson
We covered a lot of ground. Is there anything you want to add at this point?
McQuade
I'll probably think of it later.
Jacobson
Thank you.
McQuade
You're very welcome. I did think of one thing; it's been great seeing you again.
Jacobson
Thank you.
McQuade
It really has. That's the nice thing when you meet people from the movement that you knew at one point in your life, and you haven't seen each other in a while, and you see each other again; it's very nice.
Jacobson
That's why I volunteered to do it.
McQuade
It's been fun.
Jacobson
Okay.
Courtesy of Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
http://content.cdlib.org/view?docId=hb5c60042m&brand=calisphere
Title: New York Activists and Leaders in the Disability Rights and Independent Living Movement: Vol 1
By: Sherer Jacobson, Denise, editor
Date: 2004 (issued)
Contributing Institution: Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
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