“Building a Healing Community from ACT UP to Housing Works - An Interview with Keith Cylar” by Benjamin Shepard. Published in:
From ACT UP to the WTO: Urban Protest And Community-Building in the Era of Globalization
Edited by Benjamin Shepard and Ronald Hayduk Verso Press, 2002.
Keith Cylar began our interview on AIDS activism and community building by explaining:
For many of our clients the first step toward becoming whole is to forgive themselves for all the scary and insane things that happened to them, and they may have done to others. It requires the staff to develop a real sense of compassion as the clients often become abusive, self destructive and angry toward them because that’s how they relate to a world that has been hostile and abusive to them. And finally, it requires courage to face these behaviors and to begin to heal from these events and move forward with their lives in spite of having a life threatening illness that will kill them sooner or later.
It wasn’t an unusual argument from the co-executive director of an organization whose mission is to reach the most vulnerable and underserved among those affected by the AIDS epidemic in New York City—homeless persons of color whose positive HIV diagnoses are complicated by a history of chronic mental illness and/or chemical dependence. In the ten years since it was found, Housing Works has had to balance between being a social service and social movement organization. Through programs such as their Second Life Job Training Program, Social Ventures Development Program, and primary care clinics, Housing Works utilizes the tools of community economic development to open up spaces for an often invisible population. Their literature suggests, “The Social Ventures Development Program includes several entrepreneurial ventures which were created to meet two critical challenges facing most AIDS service and anti- poverty organizations: the need to generate unrestricted income for our social service programs and the need to create employment opportunities for clients who wish to enter or re-enter the workforce”
BS: When did HIV/AIDS first cross the path of your life?
KC: 1984, and ’83, when I was in Boston and a very good friend that I had met. I had developed an incredible network of young black gay professionals, that were my core group of friends. It was an awesome support group of people that were gifted and lovely. In 1983, the first of our group died from some rare blood disease – it was AIDS, only the world didn’t know it. As the epidemic began to show its true nature, we became increasingly uncomfortable. And at some point around then, we began to count the years of unprotected sex and drug use against the years of monastic life behavior, knowing all the time that any one of us could be the next. And one by one they died. Of that circle, I happen to be, I believe, one of the last ones still alive, and I’m infected and scared. At that point I was having sex wherever. It was really schitzophenic; there was the fear of contagion, but the unforgiving presence of hormones and the need to have sex. I don’t regret it. I actually wish that I had more sex than I had back then but I was a prude. I was a nerd. I cried a lot back then because of how lonely I was. It was a very alienated world which didn’t necessarily know how to deal with a strong, black, intelligent, jock male who is also a faggot who loves men and loves kinky sex….
BS: A little of that James Baldwin feeling…?
KC: Absolutely, James speaks to that kind of pain and isolation and where do you go to find safe harbors. And so as the epidemic began to rage, literally, we would count years. It was very painful coming up as a sexual person within the AIDS epidemic…which is another story that I really wanna write and talk about…
BS: Now, what about your first arrest?
KC: My first arrest was actually kind of amazing. It was at the Waldorf, probably ’88 or ’89. And it was an affinity group, whoever was president was coming there, right. And we thought we were so cool and so smart because we had rented a room (laughs) under somebody else’s credit card, not tied to ACT UP at all. You know, we all filtered in one by one and made our way up to the room. And we were doing a banner drop. And we thought we were going to handcuff ourselves on that big expensive clock in the middle of the lobby. We were going to leaflet and we had all the multi things going on that we were going to do while a banner was being dropped out of the roof. There was a demonstration on the outside and those of us going in were so cool. We were (whispers) and we had a password, all of that, all of that… just total covert. So we finally all get into the room and we have it timed, bom, bom, bom, bom… very James Bond, right? I go to the door of the fucking door of the hotel room that we are renting under this name and the fucking secret service had reversed the god damn key hole. They were fucking watching us…(laughs). You know? So we do the whole thing. we’re handcuffed behind the great big clock in the middle of the lobby. And the banner drop happens the demonstration is going on--all this craziness. And we’re arrested and we’re handcuffed. And my partner Charles was there to walk me through it. We spend a couple of hours in jail. They spring us. We’re done. And then it was like, for a while, an arrest here, an arrest there. Where are we getting arrested next? this action, that action. And the only arrest I missed that I wish I’d gone to, I was supposed to be part of the group, the Power Tools, that went down to South Carolina to drill themselves into Burroughs Welcome. I was supposed to go but I chickened out at the last minute.
BS: How come you chickened out?
KC: Because I’m a black man and going down to the South and having them put fucking handcuffs on me was more than I wanted to experience. I’m from the South.
Majority Action/ ACT UP BS: So when did you first go to an ACT UP meeting?
KC: In 1987, the love of my life died from AIDS. And he died within four days of the official diagnosis. And I didn’t know what to do and I just freaked. And I thought, I was going to die and I didn’t know where to go and I didn’t know what to do and I wanted my man back. Somehow I found out the I found out the Community Health Project was at the Gay and Lesbian Center. And they had this program for the worried-well, which back then gave information about drug use on your system and counseling; it was a very holistic center. I went there and my appointment happened to be on a Monday evening. And when I walked down after my appointment, quite shell-shocked, I saw this table full of paper and all of these people in black leather, this guy in drag with big earrings shouting at everyone and all these dykes. At that point in time, I was very much into wearing black leather. And they started talking about AIDS. Larry Kramer was up talking. And I saw all this literature and information so I walked in and I stood in the back of the room and I crossed my arms. There were all these faggots, people running around, and so I wanted to hear the information. So I listened and I took all of the information off the table. And the next week I came back. And what I would do was…I would stand in the back of the room. And I wouldn’t talk to anybody and I was mumbling, ‘get the fuck out here’ about all these white people. And I did that a couple of times. And this guy, Dan Williams, who was also black, was also standing in the back of the room. He started standing behind me. He could hear me. And I’d nod and he’d nod. And I’d listen to this craziness that was going on but I wanted the information so I had to come. The real deal was us dishing on everyone there. Then one day he said, “Hi, my name is Dan” and we started to talk and Dan decided I needed to come to the Majority Action Committee of ACT UP. It was [called] the Majority Action Committee because the majority of people dying of AIDS were people of color. Majority Action focused on Black and Latino issues in the epidemic. And I started to go there. And then they needed somebody to be a representative to Treatment and Data, which was the treatment committee of ACT UP where everything was happening with drug development and treatment issues. Slowly, one day at the large meeting, I raised my hand and all of a sudden people realized that I had something to say. And then the next thing I know, we were doing the next Wall Street action. So I go and I’d never been to a demonstration in my life. And the television cameras picked up on me being there. They walked up to me. They stuck the microphone in front of my face and said, “What is this all about?” So I responded and the next thing I know, I’m it. And I’m going to this committee and that committee. I’m goin’ here, I’m goin’ there. And that was a period in my life when I wore nothing but black. And all of a sudden I knew all this stuff about AIDS and HIV. And I was very much into the leather scene. And I was a drug dealer and people in the gay bar scene, the leather scene, began to realize that I knew something about AIDS and HIV. And they began to ask me questions. So I was at after-hours dealing with safer sex issues and helping people deal with losing this one and that one… And AIDS became a focal point in my life. And I had dropped out of social work school [at Columbia] at that point. I was swept away.
Housing is an AIDS Issue BS: What about this Housing Committee? When did housing become an AIDS issue? When did Housing and AIDS become linked? Its not part of everybody’s consciousness?
KC: Let me tell you what was happening. There was a gridlock in the hospital system. Charlie King, Ginny Shubert, Eric Sawyer started recognizing the issue in ‘88, ‘87. For me working in the hospital… I couldn’t get people out of the hospital because they didn’t have a place to live. We’d get ‘em well from whatever brought them in; they wouldn’t have a place to live. They’d stay in the hospitals and they’d pick up another thing and then they’d die. Remember, ‘88, ‘90, ‘91, ‘92--New York City literally had hospital gridlock and that was when they were keeping people out on hospital gurneys in the hallways. That was when people were not being fed, bathed or touched. It was horrendous. You can’t imagine what it was like to be black, gay, a drug user, transgender, and dying from AIDS. So housing all of a sudden became this issue. ACT UP recognized it and formed this Housing Committee. I got involved in the Housing Committee when they came to the Majority Action Committee to do a presentation, asking us to help them get money from the floor to go to the First National African American Conference on AIDS. It was going to be in Washington [D.C.]. There was this guy there, Charles King, I sort of ripped into Charles King. We started working together. The strategy was to push, push, push. It wasn’t different than the general ACT UP strategy about inclusion. But it was always to get those populations also included. It was easy for the world to deal with gay white men. People of color were so far off the Richter scale, and it was also to hold people of color organizations accountable. A lot of this stuff for me became very emotional but I have not focused on it because I plan to do this work for a long time and I have learned. This is the problem that happened with ACT UP. You cannot last forever on anger. You cannot last forever on the negative side of emotions. And you really have to learn how to love. And you have to go to much more positive spaces ultimately if you are going to do this for a long time. And part of what happened with ACT UP was its evolution had to do not only with this intense creative thing and very brilliant people who created and populated and ran organizations. They were so competitive and so angry and bitter at the outside world and they needed [to] be because we were literally fighting for our lives. But inside we needed to learn how to love. We needed to learn how to care for each other. We needed to learn that I wasn’t necessarily your enemy.
BS: There was also the recognition that doing AIDS work meant doing race, class, and gender work.
KC: That came for people of color. We were trying to do that and they were doing “Drugs into Bodies.” So there was always this contention. When ACT UP worked well and there was a real consensus process and you could talk about stuff and you could talk it through, you could work together. And that was when it worked well. The fights that happened out of that lead to people splintering. You cannot build a community in hate, you cannot build a community on anger. You cannot build a community on death and dying. The overwhelming thing about the AIDS epidemic is they died.
Housing Works, Shelter Kills
Housing Works, how did we get there from ACT UP? I was a social worker working in the hospital system. Charles was at the Coalition for the Homeless doing legal entitlements, getting arrested as often as he could with the Housing Group. Eric Sawyer was with the Housing Group in ACT UP. His big dream was he wanted to build shit. He wanted to be a real estate developer. He had all white boy grandiose dream that he’s actually living out. That was cool. And there was this women who was Charles’ supervisor, Ginny Shubert, who wanted to do this impact litigation ‘cause she was a lawyer. She was originally from Alabama; she was doing death penalty work in Florida. She likes attacking a system. And there was the three of us--me, Eric, and Charles--and it was literally out of frustration. AIDS service organizations kept telling us that they couldn’t take our clients, and all of the agencies had these stupid rules that said you had to be clean and sober. You had to be this, you had to be that. But there was this old social work principle that you have to take people where they are. If you believe that then you have to take them taking their drugs with their homelessness. And if you think about the fact that back then having an AIDS diagnosis meant that you were going to die in six to nine months, can you give me one reason why I would not want to get high? For me as a social worker, it just made sense to say, “Okay, get high. But how do we manage your life so you can live a little longer?” And sometimes it wasn’t about just living longer but what is the work you have to do to help them die well. So takes you into the family dynamics and the very reasons why you were getting high. So when you do that kind of work with people, you understand that they are going to get high. Getting high is a very sane reaction to a very insane world. And sometimes the world that we live in is completely fucked up and you need to change it. This is where I think most social workers and most schools of social work fail. Social work school should be training people to be social change people. And instead they train people to fix people so that they fit in with these insane systems. And that’s just wrong and counter to what I thought they were teaching in social work school but I was one of those people who they kept wanting to throw out of social work school. Housing Works started when after demonstrating, fighting, and working in the AIDS community, the people that I cared the most about were the people least likely to get served. And so we decided we had to do it ourselves. All of a sudden, we got this arrogant streak. Fuck it--nobody else can do this. We’re gonna do it. So we started writing about it and talking about it. And we started a process that involved actually twenty to thirty people. And we talked about what kind of bylaws and organization it would be that was a shared responsibility and would empower clients. And then we recruited a whole lot of people who were in this group, AIDA – it was AIDS into Direct Action. And it was made up of homeless and formerly homeless people, many people of color who did direct action around these issues. We included them in all of the discussions because it was important to design something that they had insight into. It was important for their voices to be heard throughout. We got a lot of them on the board so that if push came to shove, they could stop it. And we wanted to be different than AIDS Inc. And then we became this radical housing provider/service agency/advocacy thing. All of them were interrelated and the people who you were trying to get services to needed you to be in all of those arenas. And Ginny, Charles, and myself had in our own areas of expertise. So [as] not to recreate the kind of traditional social service model, we all were going to be co- executive directors. And we were going to run this thing together and there was going to be a consensus process. And our bosses were going to be our clients, and it was going to be this new model or at least a way to prevent all the kinds of crap that prevent the other social service agencies [from succeeding]. And this is where it all becomes blurred because you are doing the activist stuff over here and you’re doing the social service stuff over here. But the social service work we do is actually at the extreme of social service work because nobody knew how to treat an active drug user. No one knew how to deal with an active person who was dying from AIDS and HIV and they didn’t want to confront that. They didn’t fit within their nice, neat little models. And here we were saying, “Fine, everybody that you can’t work with in your program, I want. I want to work with them and I’ll find ways to move them.” And a lot of that just had to do with… first of all you had to listen. You had to listen to the people. And when they told you that they were hungry, then you needed to fuckin’ feed ‘em. And when they needed this and this and this, if you met them and did this, this, and this, then, you know what, they would try a little bit to do what you needed them to do, which meant that they might need for you to go with them to the doctor’s office. You had to sit there and you had to explain why the doctor needed to take their bloodwork and you had to explain what this meant and you had to talk to them because the doctors and the nurses didn’t have time. And the doctors and nurses were looking at them and seeing them simply as problems. They were people. They were wonderful people and they had lots of stories. They had lots of life and they had lots of wisdom. And they had a lot to give back but nobody ever valued them. Nobody ever loved them. And so you became this great positive cathartic thing to them that gave them this opportunity to reclaim their lives. From ACT UP to Housing Works…the AIDS story continues.