Obviously, without question, ACT UP's biggest achievements were pushing and achieving the development of antiretrovirals. While it was science that did the work, it was ACT UP that put the muscle behind the science and made the systems work. We got the drug companies and got the community involved. Also, ACT UP can very much take credit for opening up the funding streams for prevention through the CDC [U.S. Centers for Disease Control and Prevention], as well as for the Ryan White Care Act. Certainly, there were a lot of legislators who claimed credit for that legislation, but it never would have happened if there hadn't been activists' voices out there demanding.
It's important to mention that the AIDS activism generated by ACT UP here in New York and around the country was a huge benefit to LGBT rights overall. I don't think we would have marriage today if we hadn't had ACT UP in the '80s, calling for people to be out about their HIV status, calling for people to be out about being gay. Before Queer Nation came into being, ACT UP was doing the kiss-ins and other gay visibility actions around the country that really helped to make it acceptable for gay people to claim their own place in this public space, and make it impossible for people not to recognize that there were -- that they knew people who were -- part of the LGBT community.
On a more local level here in New York, it was a partnership between the Housing Committee of ACT UP and the AIDS Project of the Coalition for the Homeless that really started this thicket of housing for people with AIDS and HIV in New York City -- that ultimately led to the formation of Housing Works. ACT UP actually gave us our first grant of $25,000 and I think it was money well invested, despite that it was a very controversial vote on the floor. ACT UP is also responsible for the legalization of syringe exchange in New York, thanks to the working group Majority Action.
What were some of ACT UP's largest failures?
ACT UP's biggest failure was that it walked away like it had won the battle. And yes, there are ACT UPs around the country and the world still doing work, but essentially once the spigot started flowing, and once the ARVs [antiretrovirals] became available, people acted like the battle was over -- and clearly it wasn't. I really hope that for the 25th anniversary, the new energy that's been brought to the fore by Occupy Wall Street will help us reengage people with the idea that the epidemic is no way near over. People are still dying. And we can still win this, but only if we go back to the tactics that made us very successful in the late '80s and early '90s, of direct action, smart policy formation, and civil disobedience.
Another failure of ACT UP was its difficulty to address issues of economic justice and race. Yes, there were people of color who certainly played key leadership roles in ACT UP, no question. Keith Cylar, my partner [who died in 2004], was certainly a powerful voice within ACT UP, as was Robert Vazquez-Pacheco. But there was definitely a split on how to address the issues that impacted people of color.
Despite Housing Works coming from ACT UP, ACT UP never really fully embraced and championed the role of housing as a structural intervention, the need to address homelessness as part of addressing the AIDS epidemic or other marginalized populations impacted by HIV and AIDS. There was a big division in ACT UP over things like this. There was a split that led the Treatment and Data Committee to walk out and form TAG. And where I think David France's film [How to Survive a Plague] only superficially describes that split, a lot of that split was about the people who wanted to solely focus on "Drugs Into Bodies," which would serve mostly middle class gay men, [versus those who thought] it was about the whole system of social and economic injustice that caused this [epidemic]. And there were plenty of people within ACT UP who just couldn't see that AIDS was about other social and economic justice issues. Because of that, so many issues got left on the table. But it was also because of the working groups, Majority Action and the Housing Committee that some of the economic justice work did get done; because these groups were constantly trying to hold ACT UP accountable.
This generation's AIDS activism and the activism from the '80s and '90s look radically different. For example, the New York City Department of Health and Mental Hygiene's public service announcement campaign "It's Never Just HIV," which launched on television in December 2010, was in my opinion extremely problematic and degrading to gay and bisexual men. Now, people were upset and the community held public forums to air out its grievances, but nothing really happened. Despite the controversy, the campaign was not pulled, and to make matters worse, it was extended with ads placed on buses and subways throughout the city. During this same time, I heard grumblings from other activists who believed that had this incident happened during the ACT UP days, Monica Sweeney, the health department's assistant commissioner of the Bureau of HIV/AIDS Prevention and Control, wouldn't have her job. And so my question is: Has the HIV/AIDS movement lost its edge and ability to fight these institutionalized systems?
For the moment, I would say yes. But I would say that the edge can be regained. In their book, Poor People's Movements: Why They Succeed, How They Fail, Piven and Cloward talk about how social movements in the United States have generally been very successful, initially, and they get killed by institutionalization. The same can be said about the HIV/AIDS movement once we saw the creation of the AIDS industry. More and more people who started out as AIDS activists got jobs in AIDS service organizations and, as the Ryan White dollars started flowing, as the CDC prevention dollars started flowing, we started building institutions. Once you have an institution, institutional preservation tends to trump everything.
I can actually mark a clear moment when you saw the shift from AIDS service organizations being willing to be out there in the street with the AIDS activists, fighting for the same thing, and all of a sudden realizing that they had a stake in being acquiescent and coexisting with the powers that be. And that's when Giuliani came into power.
When Giuliani started menacing and his administration started making threats, they used Housing Works as an example, taking away all of the money that flowed through the city. All of a sudden, everybody wanted to cooperate. Nobody wanted to take on the city's Department of Health, or the Mayor's Office of AIDS Policy, because your institution could get punished for that. And so when you get down to this Monica Sweeney thing, where were the people who were going to rise up and say this is the wrong thing? Well, most of them happened to be working for organizations that have contracts that Monica Sweeney signs off on.
I think if we had had a strong ACT UP that was independent of those AIDS service organizations, you would have seen a much bigger response, and a more effective response. And Monica Sweeney wouldn't have her job. And frankly, she shouldn't, but that's another story.
Yes, that is another story. [Laughs.] But yes, AIDS Inc. has created this dynamic of not biting the hand that feeds it, and in a way that has watered down the movement's ability to respond to injustice.
That's why I think there needs to be a new Occupy Wall Street. But this lost edge isn't just happening in the AIDS community; we see this in the LGBT movement. Queer Nation was only around for a hot second, but it was very effective for the time that it was around. Out of that came a lot of energy that got soaked up by institution building that was not AIDS-focused, but LGBT-focused. And so you saw a tremendous shift in power to the Pride Agenda, to the Human Rights Campaign fund, etc. And you started seeing it playing out in the political halls and campaign donations. Yes, it was effective for what it has achieved, but you no longer had the radical, in-your-face queers who were going to go do a sit-in in the Health Commissioner's office to protest these ads either. Because, those ads were not just a vilification of people with HIV, they were also very homophobic. And that could have been the source of an uprising, but that didn't happen.
That leads me into my next question. Once the epidemic hit, the HIV/AIDS movement and LGBT movement were one in the same. Now, that's not the case. I used to work for an LGBT organization and when I tried to address HIV issues, I was told, "We don't do that here." I was utterly shocked. I understand that heterosexual men and women are living with HIV/AIDS too, but since when did HIV/AIDS stop being an LGBT issue?
Exactly. I have had confrontations with groups who claim to be grassroots and different than the Human Rights Campaign, but at the end of the day they are still championing the same issues and completely ignoring AIDS. If you looked at young black men, whether gay or bisexual, AIDS was clearly the biggest threat facing their lives. And yet you wouldn't see it.
In the end, if you claim to really care about gay people of color, particularly gay men of color, AIDS has got to be on your agenda.
The LGBT movement is playing some serious respectability politics in order to gain rights for the community as a whole. Part of its strategy is to convince straight people (i.e., voters) that LGBT folks are just like them. And so, with that, you cannot talk about sex, because gay sex freaks a lot of straight people out. You cannot take on HIV/AIDS as a core issue, because HIV embodies what makes straight America uncomfortable -- raw anal sex, drugs, etc. And so HIV/AIDS is ignored by these national organizations that have the most power and the most money. This really bothers me.
It should bother you. But I don't think it's just the large national organizations.
Six or seven years ago, I was invited to speak on behalf of the Campaign to End AIDS at a statewide LGBT conference in Alabama. I was asked to speak at a workshop that was put up against the gay marriage workshop. I had six people, and the other had 300 people. It was an overwhelmingly white audience for the whole conference. And I'm assuming that the membership is predominantly white. Marriage was their agenda, when I know that in Alabama, again, for black gay men, the agenda has got to be HIV and AIDS.
The same thing happens here in New York: statewide organizations that don't address AIDS. There really is this segregation.
Do you believe that this split between the LGBT movement and the HIV/AIDS movement has meant less power for the HIV movement?
No question it has, but there's something else that has happened, too. Look at the demographics of the LGBT movement and the demographics of the AIDS movement today. If you were to go to an LGBT rights event, it would be largely white. Not to say that there wouldn't be a fair representation of people of color; there would be. But it would be largely white, and it would be largely people with money. So when the Prop 8 spontaneous demonstrations happened here in New York, they were overwhelmingly white and they were overwhelmingly middle class. And for some people, it was the first time in 15 or 20 years, or the first time ever, that they'd come out to a demonstration.
Now, if you go to an AIDS demonstration today, what you're going to see is overwhelmingly people of color, overwhelmingly people with low incomes, and probably a majority of them are straight. The LGBT community has disowned AIDS, because so many white people like myself who are living with HIV, we know we're never going to die from AIDS. It's the last thing I'm worried about, in terms of my health, as long as I have my health insurance in place. And I have no reason to think I won't have it in place.
For those who have money and access, AIDS is a chronic manageable condition, as opposed to a condition that is not so manageable and is killing people when they have a lower income and don't have access to the same resources.
When I look at activism now and look at who this epidemic disproportionately impacts, I don't see that same visceral reaction that ACT UP had during its heyday -- and despite the racial and gender diversity of ACT UP, racial privilege did have something to do with the group's ability to achieve what it did.
And yes, there was a civil rights movement, so in no way am I saying that people of color cannot achieve social justice if they lead the way. But in terms of HIV/AIDS, we don't see brown and black people shutting down Wall Street or dropping a giant rubber over Bill O'Reilly or Newt Gingrich's house. [Laughs.] And while we talked earlier about how AIDS Inc. and other factors have diminished the current AIDS response, is there something about a long history of being disenfranchised due to race, class, gender and sexual orientation that impacts people of color's ability to respond? Or is something else also at play here? Because I hate to say it, but communities of color are dying, and yet the collective response seems rather muted in comparison.
I'm sure that that's a part of it. But it's also important to note that those same white activists who were used to their privilege also had resources to bring to bear. It wasn't cheap to drop a condom over Jesse Helms' house. And they had connections with powerful people. Peter Staley had the ability to get into the stock exchange when we wanted to shut it down, because he'd worked there. He had connections. He had pull.
ACT UP was able to raise a tremendous amount of money. Again, it was because it had people who knew people who had money. And that was important to fuel it.
But I also think we have to look at what it takes to get up the gumption to take on oppressive systems. Are you going to make that your priority among all the other things that you need to do to make your life happen well? It takes a lot of energy to maintain the anger and rage and be willing to confront the police and go to jail, and all the rest of that stuff. So it's not just about how often you are told no, but how many things you have to juggle on your plate. Ask yourself, "You know what? This is worth dropping everything for."
Can you give an example of this?
Sure. We're organizing a direct action on behalf of transgender rights. One of the things that we've been very clear about is that if this is going to involve civil disobedience, it has to be led by transgender folk. That's not to say that non-trans folk can't be a part of it. But if the point is to bring attention to this issue, transgender people have to take the lead.
Well, it's a little different question, asking me if I'm willing to go to jail than asking a trans person, especially if it's a low-income trans person who has already had negative encounters with the police. To do something that's going to risk arrest, and risk all of the humiliation that comes around being arrested when the police are confused about your gender identity, this is a huge challenge.
An employee of Housing Works called me the other day and said she wanted to participate in the civil disobedience action in Washington around syringe exchange. She's recently separated, and it was a bad separation. There's a custody battle, and right now she's got their 5-year-old child. I told her, "No. You shouldn't risk arrest. You don't want to give your ex any ammunition to fuel the battle. If he found out you went and got arrested, he would, I'm sure, try to use that to say you're a bad mother. So, as much as you want to be down with the cause, you shouldn't participate in this action until that's taken care of."
When you think about the things that plague the lives of particularly lower-income people, you start coming up with: What are my priorities today? And then there's also a matter of prioritizing which injustice am I going to fight today. Is it stop-and-frisk, or is it the complete neglect of people with HIV until they develop AIDS?
Final question: When you think about the future of AIDS activism, what comes to mind?
Now, that's a tough question. [Laughs.] First of all, I could be very depressed, because I do very strongly feel that we have the tools to end AIDS in the United States and around the globe right now. It goes back to the same thing we've been saying for years: It's not a lack of resources; it's a lack of political will. So that's the more depressing note.
The more optimistic note is that I do feel that there has been, over the last year, a yearning to revitalize the AIDS movement. Some of that comes from the International AIDS Conference being held here. Some of that springs from people's realization that we really do have the tools and aren't using them. Some of that comes from Occupy Wall Street. And so I'm actually optimistic that more and more people are saying, "It's a sin that we haven't done this. We've got to do it. I'm willing to take this to the streets to make it happen."
This transcript has been lightly edited for clarity.
Follow Kellee on Twitter: @kelleent.