Why did you become involved in ACT UP?
In 1980, Jeff, my boyfriend, was diagnosed with KS [Kaposi's sarcoma]. He progressively got sicker and sicker. When he died in 1986, afterwards I needed to do something. So I was volunteering for an organization at The Center and every Monday, my friend David Kirschenbaum (who actually became an ACT UP member as well) and I would walk through the ACT UP meetings. Finally we decided, "Well, let's check out what this is about."
After we did that, we decided to join. But I also joined because I felt like I really needed to do so. I saw how Jeff had been treated and I thought, you know, this is just horrible. No one deserves to be treated this way.
Did you test positive before joining ACT UP, or after?
Before. Well, I mean, I found out by figuring it out, but I wasn't tested until after I joined ACT UP. Looking back, I had the classic flu that wasn't the flu. And I thought about it and read about infections and stuff. Most likely I was infected in the spring of 1982.
What year were you diagnosed?
In 1987. Yeah. I knew that I was positive, but ... I mean it's funny; I wasn't actually worried. During that time I was actually taking care of my lover. And so, for me, the bigger priority was taking care of Jeff. As long as I was healthy, I was OK.
Let's switch gears and talk about your experiences with ACT UP. ACT UP definitely did have members of color, and women, but I read an interview that you did with the ACT UP Oral History Project and you talked about being one of the few people of color involved at meetings.
Most definitely. I mean, there were a few prominent people of color in ACT UP. In the beginning, there was Ortez Alderson, and then there was Robert Garcia, both of whom have died now. And then myself. And then it was Moises Agosto and Keith Cylar.
I just remember there were so many conversations where people of color had to correct the room about things that were being said and assumed. Ortez was doing it all the time. God bless him; he had the patience to harangue people. He would just get up and say, "No. That is not the issue if you're a black person. And you can't assume that."
And from that frustration we started up the Majority Action Committee, which had some people of color, but mainly a lot of white people. Charles King was in it. And Keith joined it later. Then Moises and a couple of other folks started the Latino Caucus, and they started doing work, as well. But there was a time when I could look around and count on half of one hand the amount of people of color in the room.
Why do you think there weren't that many people of color? It's New York City, a city full of diversity.
I think that there are a couple of things that created this disconnect. From the beginning, people saw HIV and AIDS as a gay white man's disease. So a lot of people in communities of color were, for whatever reason, ignoring the epidemic. "I know that HIV is about white fags; that's not our concern."
And then what happened, too, was that for people of color, especially in the early days, obviously, to deal with HIV and AIDS meant you had to come out -- not just about your status, but as a gay man. In communities of color, the network of family and friends is very, very tight. When you go out of that network, you can really be risking your life. So, in order to come out and talk about that stuff, you may take yourself out of that safe environment of the people that would normally support you. That's a huge risk that a lot of people were not willing to take. That's not to say that it doesn't happen for gay white men. But in American society, for the most part, people of color get a majority of their support from other people of color.
So I think that partially those were reasons why as well. And also stigma. I used to be the director of education at the Minority Task Force on AIDS and I remember going out in communities of color and arguing with them, saying "This is not a gay white man's disease." You know? I'd say, "Look. I'm not a gay white man!" I would also tell them that this wasn't just about IV [intravenous] drug users either. There was a lot of shame and fear involved.
When they first closed the bathhouses in New York City, the ones in Harlem still stayed open. They never closed Mount Morris, and this was at the height of the argument about the bathhouses and the role they played in the epidemic, yet not one bathhouse that was located in communities of color was closed. So, in some ways, that tells you where sort of the health and welfare of people of color were on the general radar ... which is that they didn't care.
What were some of the major tensions in terms of race and class that you came across?
There was this assumption that "we're all gay here" and how that should transcend everything. And I quickly learned that that stance didn't work for me. My experience as a working class Puerto Rican man who grew up in the South Bronx is very different, for example, from Peter Staley's (who I adore).
One of the things that I saw was that the gay white men organized in ACT UP ... let me preface this by saying that I will be forever grateful for them, because if they hadn't done anything, we'd all be dead, but they organized because they knew that the system that they grew up with wasn't working for them. It suddenly had betrayed them and didn't actually care about their lives. They didn't say that the system was flawed; they believed it could be repaired, tweaked for it to work better. Whereas for women and people of color, women and people of color said, "This system has never worked for us."
We were like, "The system has to be scrapped and we need to come up with something new." And so there were plenty of arguments where people of color would say, "Hey, this situation demands more, because we do not have access to the same system that you do."
And that, I think, was an eye opener for a lot of the folks in ACT UP, many of whom were professional middle class guys. This was the first time that they ever started really interacting with IV drug users, women and people of color. So part of it was an educational process. In some ways, Ortez and Robert would sort of harangue them. And then I'd sort of pull people aside and I'd try to talk to them, because sometimes you catch more flies with honey. I realized that sometimes you just can't beat people on the head with a stick, because with some of them, they just didn't understand; they didn't know.
What do you think were some of the significant achievements of ACT UP?
Well, first, I would say that they put AIDS on the map. They actually brought AIDS to the public's attention. And, in doing that, they also put gay men and lesbians on the map. The whole gay marriage and the whole gays-in-the-military discussions could not have happened without ACT UP and organizations like Queer Nation.
Because here we had "fags" and "junkies" saying that they had rights, and demanding them, which is a totally revolutionary concept. It wasn't like we were living in shame or dying quietly. We were saying, "We're citizens and we deserve to be treated like any other citizen, and to have expectations of our society the same way that any other citizen has, any other member of our society has." So, in some ways, that was an achievement of ACT UP. That was a byproduct.
I think the second thing they did was that they made people and institutions accountable. They absolutely took to task public health officials, government officials, the media, the Catholic Church, society in general.
And, obviously, ACT UP is responsible for "Getting Drugs Into Bodies" and we did that spectacularly. And not only did we do that, but we also totally revolutionized the entire drug research and approval process. One of the ways we did that was by opening it up to public scrutiny, which had never been done before. We showed researchers that there are real human consequences to what they're doing and saying. Their research affects human lives, and this is why they do it. In some ways, we made it more ethical and gave researchers a serious wake-up call.
Also, I think ACT UP revolutionized the doctor-patient relationship. We pushed for people to have a "You know what? I'm not passive here" approach. I can't tell you, Kellee, how many times that I'd get a new doctor, and I would say, "Can I clue you in on something that just happens to be a fact -- that you're working for me? OK? You're working for me. I'm paying you for this service."
Right. It's about being an empowered patient.
Absolutely. And it's the fact that you could. I had started doing that with Jeff, when we were in the hospital. I would question his doctors and the nurses, and everything else. I would drive them crazy, you know? But what that meant, for example, was that I became a much savvier patient and questioned doctors.
Finally, in terms of achievements, ACT UP actively encouraged, or spawned, if you will, AIDS activist movements around the world, and showed people that, "Wow, you can actually stand up." In some ways, the Tea Party is another sort of result of ACT UP activism -- they are the child we wouldn't want to acknowledge. [Laughs.]
If you had to name some failures of ACT UP, what would they be?
ACT UP didn't dream big enough. We should have been talking about universal health care from the beginning. We should have been talking about that, so that we could have put it on the map; so that by today, this whole concept of universal health care would not have had the response that it did or accusations of it being socialist.
But we also didn't cross disease lines. I would advocate this all the time: We need to approach the people with cancer. We need to go to women with breast cancer. We need to go to people with diabetes. We need to pull all these groups together and pool our interests and where our interests lie together. Because the changes that can happen for one will benefit us all.
I also think that ACT UP was a shortsighted movement that didn't plan for what might happen in the future. We wanted to get "Drugs Into Bodies," but then we never thought about at what cost. We never took the conversation on about big pharma. We never expanded the battle about big pharma, which I think is another major failure. Because now activists agree that early treatment is the best way to deal with HIV infection. But that means more money in the hands of the pharmaceutical companies.
How has AIDS activism changed since the days of ACT UP?
Well, a lot of AIDS activists from the past either burned out or they died. Also, in the wake of protease inhibitors, some activists moved their focus toward international work. Just look at how people work for places like the U.N. In a way, their attitude is like the epidemic in the U.S. is over. "HIV is a disease of the poor, and people of color. That's not my problem anymore. So we can go worry about the children in Africa and not the children in Alabama."
I think that that's what happened, that there was a shift of attention. "We got ours. We have our institutions. We have our medications. We have our government bureaucracies now. So, this is how it is." I think also that part of the problem is AIDS, Inc. It's wild, you know?
Yes, it is. Charles and I talked about AIDS, Inc., and how depending on places like the health department for grants can stop someone from speaking out against those same places that give you money. People who are running organizations are making hard decisions and really having to think about how their actions impact an entire community. Because that can be the difference between continuing a testing campaign in East New York and it not being funded again next year.
Also, in terms of AIDS, Inc., we get this very limited sort of wedge of the pie that we have to work with. We're told that, "This is the slice, and you all have to compete for your little bit of the slice." And no one says, "Why can't the slice be bigger?" So what everyone does is everyone just jumps into the competition.
Which has AIDS, Inc., functioning like Flavor of Love. Everybody is fighting each other to win this one little rapper with gold teeth. I have heard organizations say things like, "Why is that gay org getting more money than my organization that focuses on women?" It's really sad.
Yeah. I had never really experienced that until I started working in Philadelphia doing community plans and community prevention. Before I moved to Philadelphia, I had never seen such a fractious group of service providers. I would come into meetings and people would be arguing with each other. I would have to get up and yell, "Can we stop arguing with each other, and deal with an epidemic?" I said, "This is like rearranging deck chairs on the Titanic, OK?" It's like, "Stop that."
A mess. The ship is going down, and you guys are not paying attention.
Exactly. People are getting infected, meanwhile you are arguing with each other about who is going to stand on the next street corner. Very frustrating. What I also think happens -- and it's an inherent problem of all nonprofits -- is that they are always scrambling for money and resources. Because so many are not able to pay competitive salaries that reflect people's expertise and experience, they lose some of the best and the brightest talent. This is why a lot of great people take off for the for-profit world. And this happens to communities of color all the time.
But what also happens in the nonprofit world -- and this is speaking from 20 or so more years in the business -- is that they take advantage of people's commitment by making them work like dogs, and paying them less.
When you look at the future of AIDS activism, does it make you feel optimistic, or sad?
I feel mixed about our future. I feel as if we're still not having the conversations that we have to. For example, what about economic justice? How do we relate AIDS to that? Because if we are having that economic justice conversation, then that will naturally lead to discussions about a whole shitload of other issues that are connected to HIV/AIDS.
But I still feel that there's a potential there. And maybe I'm ascribing too much to it, but I am hoping that the Occupy movement can translate that into something for us. So yeah, I have a guarded optimism -- I can be cynical about this stuff, but I don't actually think that cynicism helps. Because we need to give people some kind of hope that things can change in our lifetime.
I'll be honest; I don't always feel so great about the future. [Laughs.]
No. I hear you, girl; I hear you. But here's the thing: The work needs to be done and that's why I did it. First of all, because it needed to be done. In the end, if you don't step up, you really can't expect anyone else to.
Now that is true. What I really get worried about is the lack of young people in this movement and the lack of mentoring going on to develop the next crop of young leaders. I am not super young, but I am younger than most of the people on the panels that I am on and some of them, not all of them, talk to me like I am in high school. And I'm like, "Who are you talking to like that?" [Laughs.]
This is a complaint that I hear from other young leaders, who have great insight, are not afraid to take risks and are super innovative, but have supervisors or "elders" who dismiss them and their contributions. This vibrant, young leadership shouldn't have to wait for older leaders to die to be able to have positions of power. Go to USCA, the International AIDS Conference, or even a smaller conference, and it seems that the people asked to be on a prestigious plenary are all over the age of 40.
You're absolutely right. You don't know how many times I have been in situations where people offered me a job or asked me to do something, and I have said, "Why don't you get someone else? Why don't you get a young person?" I said, "You don't need this old queen talking. You need someone who is ahead with young people." I joke with people that I'm very, very willing to pass the torch. Just take it. Here's the torch; here's the outfit. Take it! Take it!
Yeah, but so many people in leadership positions are not willing to do what you will. I understand this desire to want to hold on to this epidemic, because a lot of people were here in the beginning doing the work when people my age were learning how to read. But no one is asking them to retire or disappear, just share this stage. Share knowledge. Especially with those young folks who are really on point and incredibly progressive, because that's the kind of thinking that we need right now.
I've always said that if you're in an organization for 10 years, then that's a mistake on your part, and on the part of your organization. Because you should keep it current. Because things do not exist in a vacuum. Whatever your relationship was to the epidemic back then, or what happened -- which is formative, and we appreciate the work you've done -- but that's not necessarily the epidemic now. We have to have people on the ground who understand what's happening right now and who can come with insight and information. I mean, God, just look at stuff like social media and how important that is in reaching young people.
What scares me is the legacy being left by the elders, and how we are being fostered as leaders if there is this resentment at times between the generations.
I agree with you. It's very interesting because I always talk about how one thing that AIDS did was take away mentorship in our community. Back in the day, when I came out as a young gay man and I went out into the world, there were always older gay men who were there to help you and correct you. You know, to check you, like, "Oh, no, you're not going to do that now. Really? You've had enough. Go home." You know? And so there was this sort of passing on of knowledge, if you will, generationally. That just isn't happening in the way that it needs to now, not in the LGBT [lesbian, gay, bisexual and transgender] community and not in HIV/AIDS leadership.
This transcript has been lightly edited for clarity.
Follow Kellee on Twitter: @kelleent.