The Body Covers: The 14th Conference on Retroviruses and Opportunistic Infections
An Interview With Julie Davids
February 27, 2007
However, I do have to take issue with some of the things he said towards the end of his remarks about the lack of leadership, and his impression of kind of a gap between different generations of the AIDS movement. Clearly, during the times of the prominence of the voices of both Larry Kramer [one of the founders of Gay Men's Health Crisis and ACT-UP] and Randy Shilts [pioneering gay journalist and author of And The Band Played On] -- who are the two people whose pictures he put up [in his slide presentation] -- and now, there are major differences in many things not the least of which is the dramatic, visible severity of the AIDS epidemic at a time [when Kramer and Shilts were active], when there was no treatment [for HIV], versus now, where there is treatment.
I think we need to recognize [that] if you go back and you look at the massive ACT UP demonstrations [in the United States] -- storming the NIH [the U.S. National Institutes of Health], taking over the FDA [U.S. Food and Drug Administration -- you literally couldn't even do that now because of Homeland Security. Access to public officials, access to public buildings, even, has been so restricted that I think we need to examine not just the differences in the AIDS movement, but the society we live in. There are so many curbs on the ability of people to speak out that we even censor ourselves before we are able to figure out what we can do.
Secondly, we have gone from a time where there was no treatment and no services to a time where there is treatment and services. Many people who were advocates, and still are, in their own way, are very busy trying to do so much with so little in a time where, as [Dr. Jaffe] has said, the number of people with HIV in the United States continues to rise, and funding has not kept the pace. People who may have been in the streets fighting for [HIV] treatment are now literally at their computer and phones, fighting for treatment for hours with healthcare providers, or with drug company patient-assistance programs.
By characterizing some sort of former era where there was ostensibly activism for prevention that has now shifted into treatment access -- I think it's pretty inaccurate. I don't think we've ever had enough advocacy for prevention. As the director of an organization, CHAMP, that's building a prevention activist movement in the United States, we have some strong history that we are in the legacy of -- for example, people starting their own needle exchanges in the absence of federal (and, most of the time, city or state) funding. But we haven't had the widespread prevention activism in the streets that we [have] had for treatment, precisely because when prevention works, nothing happens. No one says, "Oh, boy. Today I didn't get infected with HIV," in the way they said, "Wow. Today for the first time, I'm on combination therapy that actually is probably going to help me get my health back," in that striking way that happened in the mid-'90s. I think, in a way, we're kind of comparing apples to oranges.
Lastly, I'll say that I just found it really strange that at the end of his presentation, Dr. Jaffe chose to put up a picture of Nelson Mandela [Former President of South Africa and President of the African National Congress], saying, "I could only find a picture of an African leader" -- I'm paraphrasing -- "I couldn't find an African-American leader to put up here." Of course, Nelson Mandela has done amazing things, but right here in Los Angeles, look at what Phill Wilson [founder and executive director of the Black AIDS Institute has done with the Black AIDS Institute, and all the networks he's a part of, to build a base of support in the African-American community, hold the media accountable, and develop alternative media for strong HIV/AIDS advocacy.
Look at the National Black Gay Men's Advocacy Coalition, which has recently started with a very strong policy platform to look at the 46 percent crisis of infection in black gay men and other black men who have sex with men. Look around us. ... Two days ago, all weekend, we had a training with 90 people learning to be prevention research advocates, from about 20 different states in this country, who were saying, "We're here. We're ready. We're ready to be that movement."
I think we don't do justice to leaders who are emerging -- to say there are no leaders. We don't do justice to our own movements, as different as they may look now, by comparing them to a time when the epidemic was very different, society was very different, economics were very different. ... Sure, we need more, and that's why CHAMP is around. [We], and others we work with, are fighting to make sure the people are able to be as powerful as they need to be, to fight for changes. We're fighting for prevention justice -- just HIV prevention policies. But just because it's not easy, and just because it's not as strong as it needs to be, doesn't mean that people aren't doing the right thing.
I think that, for example, there are black gay men who have been very articulate in saying, "Our advocacy may not look like how you think it should look like. It may not be in this model of what Larry Kramer thinks should be done. But we need to invent this for ourselves. We need to do that for ourselves." We need to listen to what they are saying, and if we are not black gay men, for example, say, "How may I assist?" Not, "Oh, you're doing it all wrong."
I'm not saying that Dr. Jaffe said that, of course, but I do think there's a lot of pressure on people who are trying to be in a new movement, who are trying to develop leadership, and it is not going to be like 1985. It is not going to be like 1987. It's not going to be like 1992, you know? It's never going to be like it was before Clinton got elected, for example, when things started to shift. It's not going to be like it was in 1996, when people started getting combination [HIV] therapy. I think what we need to do is build alliances between activists in the United States and worldwide, rather than being pitted against each other.
Well, Dr. Jaffe almost seemed to suggest, by putting up those pictures of Mandela and Larry Kramer earlier, that what it came down to was a personality issue, that there weren't any people, actual individual human beings, who could act not just as advocates in and of their own right, but as individuals who can galvanize, by force of their charisma, by force of their personality. He did use Magic Johnson as his chosen example for a person who might be able to be that kind of leader. He seemed to imply that the problem with advocacy today might be that there isn't that person around whom everybody can rally.
Maybe we're being unduly influenced by having the Retrovirus Conference in L.A. the same week as the Oscars, but I don't feel that the cult of personality has necessarily always been that helpful in HIV/AIDS advocacy. I mean, it's as if we say, like, "There's really no one doing anything in research right now. Where is the David Ho? How come no one's been on the cover of Time magazine?" You know, I think in some ways, it's a spurious comparison.
Magic Johnson's a celebrity. People have worked with him, I think, to the extent possible, to try to move him to where he can be, in terms of advocacy. I don't know how much further it's going to go. I don't think that telling people, "You people need a leader," is really the way that we go about movement building -- that's a movement of the people. I think we need to recognize that what was fought for and won in HIV/AIDS advocacy was not fought for and won by Larry Kramer. It was fought for and won by tens of thousands of people who knew that they were in the last weeks, days, or months of their lives, who gathered together to go to the NIH and say, "You need to study the opportunistic infections that are killing me, not just AZT." And yes, they may have heard about that from Larry Kramer. What's more likely is they heard that from the hundreds of organizers who came to ACT UP New York. It's not just about one person. It's never been about one person. If we leave it at the level of celebritization, it is very thin, indeed. If we leave it at the level of people who have access to top-line media, we are inherently biasing against the majority of people who are living with, or vulnerable to, HIV/AIDS in this country who cannot access the media.
I think building a movement is the work that happens often outside of the eyes of the camera, and that's work that's happening all over this country that goes unrecognized, and that we need to be here to support.
So, I hear what Harold is saying. I think it's a shame that he has not had the opportunity to meet the people that I have the privilege of working with, who are probably never going to be on the cover of Time magazine, or they're not going to be featured on Entertainment Tonight. But yet and still, they are the leading force of justice in HIV/AIDS that is going to say, for example: "We need to reform sentencing in the United States so less folks are getting locked up." So less folks are getting locked up, so we're not dismantling our neighborhoods. So we're not dismantling neighborhoods so whole families and communities are vulnerable to HIV because of the different things that happen when you dismantle a community by incarcerating a quarter of the men in that neighborhood.
That's the kind of analysis, that's the kind of organizing, that we need to do. And you know what? It's not going to get that much coverage, because the revolution will not be televised. But that doesn't mean that the revolution can't happen in HIV/AIDS.
Julie Davids, Executive Director of CHAMP. Thank you very much.
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