Where did all the PWAs go?

by Gregg Gonsalves, New York, USA

I was talking to a friend last night. We’ve both volunteered for or worked for AIDS organizations for most of our adult lives, having founded one together in the early 1990s to fight for AIDS research and drug development. During our conversation, I remarked to him that in the “old days,â€? most of the people we worked with were HIV+—from the heady days of ACT UP even through most of the early 1990s, PWAs were in the forefront of discussions about how to confront the epidemic—and now, we could count the number of HIV+ people leading AIDS organizations on the fingers of one or two hands. 

Where did all the people with AIDS go? Well, many of them simply didn’t make it to see the advent of AIDS as a treatable illness. Then, for others who were lucky enough to survive until the protease inhibitors arrived, the AIDS crisis was over. They had been literally been given a new lease on life and moved on to or back to other pursuits, now that the fight against AIDS was no longer a personal matter of life-and-death. This is not just a US phenomenon. I had a similar conversation with a friend working at a UN agency in Geneva last week. She told me about a meeting in Brighton, England earlier this year, where a group of PWAs who work in HIV/AIDS in the international arena basically bemoaned the same thing-what has happened to the PWA movement? 

First of all, perhaps it doesn’t matter that our HIV-negative friends now run the show. I would be the last person to defend a biologically based identity politics, where the HIV+ are vested with some special purchase on knowledge. In fact, while the early AIDS movement was driven by the HIV+, our HIV-negative colleagues have always played an important role in our struggle and they still do. 

However, I do believe the emptying out of the PWAs from the fight against AIDS has some significance. The replacement of PWAs from the center of the AIDS movement with HIV-negative do-gooders, technicians and experts though has turned us back into patients, into clients, into end-users, into constituencies. They work on our behalf, provide services to us, speak for us, mobilize us, represent us. The professionalization of AIDS has turned us from subjects into objects, from actors to those acted upon. This has essentially de-politicized us and turned us into the collective representation of another intractable social ill.

Most struggles for social change have depended on a strong quotient of self-interest, whether its been the civil rights movement in the US, the fight for women’s suffrage in various countries, the drive for independence from colonialism around the world, the struggle against apartheid in South Africa, it has been the personal pursuit of freedom and for justice that motivated millions to claim what was due to them.

The struggle to ensure that all people with AIDS get the treatment they need will not happen unless people with AIDS rise up to demand it. The most well-meaning doctor, the most wonderful executive director of an AIDS or an international development organization, the most committed WHO leader, the fiercest activist will not save us. We could treat all the people who need it if we wanted to, there is simply too little political will to do so, but the words of the most eloquent Ambassador are nothing if there is no cry from below to governments to make it happen.

Let me be clear, the fact that more and more people are receiving antiretroviral therapy in the developing world and that we are offering a wide range of services to people with AIDS in my own city are good things.  I think we have gotten this far because all sorts of people, both the HIV+ and the HIV-, have fought for this and have been part of making it happen.  But we’re at a turning point now. 

A colleague of mine, who is one of the funniest and smartest people I know and writes our treatment policy newsletter at GMHC, is currently writing an update on the global progress on 3x5, entitled “Treat the World.� Last week, he started singing, “treat the world� to the tune of the 1980s hunger fundraising mega-hit, “Do They Know It’s Christmas.� I laughed and then I stopped laughing. You don’t hear much about world hunger these days.

Support for HIV/AIDS services is already crashing in the United States and AIDS organizations are struggling to survive. Attention to the global AIDS crisis will cool too, sooner than we think. What will be left across the globe are “just enough� services to ensure that no one gets too angry about what’s happening. PWAs will die, more people will become infected. The do-gooders, the experts, the technicians will continue to minister to us, and they’ll wonder where it all went wrong, why people don’t care anymore.

Yet, the transformation that paved the way for normalization, the routinization, the de-exceptionalization of AIDS, happened under our very noses. We knew in the 1980s that AIDS was special, it was happening to the fags, the junkies, the whores, the poor, the blacks, the Latinos, the women. While we wanted treatment, services, respect, we knew the world was slow to act because of who we were. AIDS made the fissures of global inequality and injustice plain for us to see and for us AIDS was a political crisis first and foremost. We told the world what we needed and demanded it. We took to the streets. But as soon as we got a little of what we needed we started turning into “charity cases.� Charity then became a substitute for political, economic, and social change.

The transformation of the early AIDS movement, led by PWAs, into a world-wide charity machine, largely led by the HIV-negative, will kill us. 

People with AIDS need to take back the movement, we don’t need to push our negative brothers and sisters aside, but we need to say, this is about us, our lives, our survival. You can help us get to where we’re going, but we don’t need you to tell us what the destination is any longer. The best of our HIV-negative colleagues will understand this, but some will tell us, that we’ve got treat HIV like any other sexually transmitted disease, that AIDS is a problem of international development, that treatment is complicated and we should just do what the doctor ordered, that thank you we’ve got it covered now, you really don’t have the appropriate credentials to be in here, how did you get in here anyway, security....security......

So making PWAs central to the fight against AIDS again isn’t an essentialist gesture, it’s a political one. This re-transformation is likely to be led by our HIV+ brothers and sisters in the developing world. In countries with high prevalence or incidence of HIV, the potential for the political mobilization of large numbers of PWAs is possible and we should do all we can to help this to happen. At home, we can start having conversations among ourselves again, about what we need and what we want, we can start re-politicizing the epidemic, waking our brothers and sisters up and reminding them that they are not clients, not patients, end-users, but people living with AIDS that have the essential right to self-determination, to be involved in the decision-making over issues that affect their lives, to take their case directly to those who keep us from what we need.

The idea of people with AIDS leading what essentially amounts to a revolution in how those who rule the planet treat the rest of us is perhaps ludicrous, but it’s the only hope we’ve got. Perhaps we should be satisfied that we can provide “a bed for the night,� short-term respite for a few, without changing the world, and with an epidemic without end. Perhaps, we’ve already made that choice.