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Can a Conference (and an Activist) Outlive Its Utility? A Moment of Unabashed Navel Gazing

Life Without AIDS, Nearly

ACT UP/Paris founder Didier Lestrade put away his Doc Marten black high-top boots back in the Mitterand years. His “no more AIDS conferences” policy has been in effect since the Yokohama snoozer nearly 10 years back. He doesn’t “do” drug company meetings any more and has limited his activist involvement to an occasional treatment column for Têtu, the gay Paris-based magazine he co-founded. And these days, he does it all from his sister’s country house where he has taken up full-time residence, nearly two hours outside of Paris.

Likewise veteran activist Moisés Agosto made the Vancouver conference (where he was awarded his gold watch and prematurely memorialized) his last AIDS junket. They both spend more time cooking, writing — and in Didier’s case, gardening — than juggling conference calls or booking flights to remarkable (and some, decidedly unremarkable) cities. More and more, aging HIV-positive activists are questioning the use of their time — and just how big a part of their lives they want “the virus” to be. More and more that answer is “less and less.” TAG alum David Barr returns from the last big international confab with nothing but questions — an enduring gratefulness — and a touch of despair.


I have been to many international AIDS conferences, probably too many. While I could and do wonder whether all those trips to all those places made any difference in anyone’s life other than my own, I also know that I worked hard at all those meetings. So, while I can wonder if the impact has been worth the expense, I know that I did what I could to make those experiences worthwhile. And while doing so, I saw some great places and spent some really good time with people I care about dearly. And that makes me feel extremely fortunate.

In Barcelona it was a bit different because I had no role to play. I was not working for an organization. I did not have anything to present or accomplish. Frankly, I was going to Europe on vacation. Mark Harrington suggested I go to Barcelona and write this series of retrospectives for TAGline. It seemed like a good way for me to reconnect with my AIDS work and the people in it. So I went. My attitude going in was not great. It seemed as if there had been so little progress since Durban. Gregg Gonsalves disagreed. He argued that while Barcelona would not represent a milestone, it would be full of evidence of progress. He said that Durban had been the turning point and that Barcelona would reinforce that fact with updates on the creation of infrastructure — both micro and macro — that would make treatment access a reality. As usual, he was right.

In Barcelona, politics had overtaken the conference. What was missing was the science. It seemed that most of the scientists had flown instead to the first of a new series of bi-annual meetings of the International AIDS Society: Argentina in 2001. Later this year, the same gang of refuseniks will be found scouring the plush hotels and three-star Michelin restaurants of Paris. Yes, the IAS and that stalwart team that runs the Retrovirus conference have finally succeeded in their efforts to shield the scientists from having to mingle with all those tedious people who run prevention programs, provide support services and health care. Of course there were scientific presentations at Barcelona, but they felt few and far between. There were certainly fewer Track A and B presentations (Basic Science and Clinical Science, respectively) then there used to be. Instead of an emphasis on science, the Barcelona organizers gave us a show complete with Bill Clinton (a few years late), clowns, and flying dancers (although not as many dancers as in Durban). Let’s just say it now and get it out of the way: no more dancers, no more clowns, no more drummers! I like a good ritual as much as the next guy but, please, a little respect. A little dignity.

Despite the tidbits of progress — most notably the treatment and prevention successes in Brazil, the work of TAC in South Africa, and the excruciatingly slow progress of the Global Fund — there was really nothing but bad news in Barcelona. The epidemic rages out of control in most of the world. The news from Asia, India, the Caribbean and Eastern Europe was devastating. In many of these places, the epidemic does not have to turn into “Africa.” Needle exchange, condom distribution, education, treatment and care could stop the epidemic from reaching massive proportions in Russia. Terje Anderson, in a beautiful speech at the closing ceremonies, said it best when he noted that, more and more, the AIDS crisis is about political will. The work in science has come far enough that there are many things we can do today to stop AIDS (or at least slow it down), but the political will to make this happen is lacking. That seemed to be the message of Barcelona. And as with most of the world situations today, I find myself feeling more powerless than ever.

Perhaps that is why the demonstration against Secretary of Health Tommy Thompson was so important for so many of the activists, advocates and service providers. The demonstration came out of nowhere (well, it came out of Gregg Gonsalves’ head and heart). It was organized in a matter of hours. There was so little discussion about whether to do it or how to do it or on what it should focus. There was a senior official from the Bush Administration and we had a chance to express our displeasure towards them.

But back to that feeling of powerlessness… AIDS is bad enough, and yet there now seem to be a bunch of other world crises that will take precedence over AIDS. I want Israel and Palestine to stop fighting. I want Muslim kids to play with my Jewish nephews. I want people to eat — in both Zimbabwe and in Alabama. I want to feel safe in my city. I want everyone who needs it to get the medicine that is keeping me alive. But at the same time, I have absolutely no idea how to have any impact on any of these things. And the Tommy Thompson demonstration didn’t really help. It felt like going through the motions. It felt good to yell (as it always does), but it didn’t feel like it did any good. If it sounds like I am depressed, maybe I am. But to return to the confusion I experienced in Durban — I am also not depressed.

I am healthy. I am enjoying my family and my friends. I am feeling good about the way I am living my life. I love my boyfriend madly, and we are making a good life for and with each other. It is a life I didn’t think I was going to get to have. I was diagnosed with HIV in 1989, and I thought I would be dead by now. I want to enjoy this time and use it well for many purposes — but not just to fight AIDS. AIDS can’t take up all my time anymore. I won’t allow it. Some days when I think about this, I feel that I am abandoning “the cause,” and that I have no right to do so because I am so lucky to be alive when so many are not. Other days, though, I think that people like Stephen Gendin would be happy to hear that I am doing things other than going to Bethesda for interminable meetings, sitting in conference centers looking at endless slide presentations and having the same unresolved arguments about when to start antiviral therapy. I wish Stephen and Hush had had the chance to enjoy each other the way Sam and I are today.

I see many people doing really good and important work — work that is making and will make a difference. I don’t want to stop working on AIDS entirely. I have a good amount of experience and feel that it is important to put this experience to use. I know that I have to find things to work on and remember that each piece of work that one does can make things better — and that no one piece of work will make it all better. I know that you do what you can until you can’t do any more, and then someone else does what he or she can. Perhaps it is time to let someone else go to Thailand in 2004.

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