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Rage Against the Machine

Anti-Politics and the AIDS Epidemic

December 2005

By "political" I mean having to do with power: who's got it, who wants it, how it operates; in a word, who's allowed to do what to whom, who gets what from whom, who gets away with it and how.

-- Margaret Atwood "Second Words"

We're so busy putting out fires right now, that we don't have the time to talk to each other and strategize and plan for the next wave, and the next day, and next month and the next week and the next year. And, we're going to have to find the time to do that in the next few months. And, we have to commit ourselves to doing that. And then, after we kick the shit out of this disease, we're all going to be alive to kick the shit out of this system, so that this never happens again.

-- Vito Russo "Why We Fight"

I told a few friends the other day that I was worried that I was turning into a shrieking harpy. There is no doubt that I have been horribly angry for the past 15 years. I have watched the AIDS epidemic flourish, mow down friends, family and colleagues, and, despite the vast sums of money and hives of activity devoted to combating the disease, new infections erupt in the millions and millions more die horrible, painful deaths each year.

I do blame my government, other governments, drug companies, conservative religious institutions, and a rogue's gallery of other villains, but, lately, I can't help but think of my own role, our community's role in perpetuating the epidemic. I've written about this phenomenon before, but I am still stuck thinking about this, largely because despite my attempts to provoke a conversation in the HIV/AIDS activist community about how we do this work, nothing seems to change very much in our modus operandi.

The AIDS epidemic has everything, in Margaret Atwood's words, "to do with power: who's got it, who wants it, how it operates; in a word, who's allowed to do what to whom, who gets what from whom, who gets away with it and how." AIDS activists knew this once, the rallying cry of ACT UP was that AIDS is a political crisis; we know this is still true particularly in places where the fight is conceived as an essentially political one: by South Africa's Treatment Action Campaign, by Russia's Front AIDS, by Thailand's Thai Drug Users' Network, by Costa Rica's Agua Buena Human Rights Association.

Don't get me wrong, I do believe that AIDS is recognized as a political crisis by many, many people. Think of the dozens of sign-on letters written and circulated, the meetings we attend to pound on the table, the reports, the press releases demanding this, demanding that. However, I have the sickening feeling that there has been a tremendous domestication of our political resistance -- we trade on the legacy of our activist past or the reputation of our fiercest living champions, but as a movement, we have become a paper tiger.

Let's take the United Nations General Assembly Special Session on HIV/AIDS in New York in May 2006 where government came to boldly lie about their records in fighting AIDS and make hundreds of new, empty promises. UNAIDS staged a series of consultations leading up to this gathering to develop a framework to achieve universal access to HIV prevention, care and treatment by 2010. Activists were hand-picked by UNAIDS to attend most of these consultations, where UN and government officials listened to the needs of people living with HIV/AIDS, of sex workers, drug users, women, men-who-have-sex with men and other "vulnerable" populations, wrote them up in reports and issued the findings in glossy newsletters put together just for the occasion. The UNGASS meeting will culminate in yet another political declaration on HIV/AIDS, based in part on these consultations and more centrally on negotiations with the governments that compose the UN's membership on what they can agree to support. Tremendous amounts of energy, money and time have been invested in these processes over the past six months. I was part of the "Global Steering Committee" on Universal Access and attended three meetings and helped to develop pages and pages of input for UNAIDS, hundreds of my colleagues have been busy this year finalizing "shadow reports," deciding who would go to New York City, who would be selected to speak at the UN, organizing satellite events to highlight important issues. Will anyone listen to us? Does anyone care what we have to say?

Has anyone asked why the hell we're devoting millions of dollars and hours to this process, when the previous UNGASS in 2001 resulted in a "Declaration of Commitment," which was honored neither in word nor deed? What are the opportunity costs for activists that are now hip deep in this exercise? What work hasn't been done or could have been done with this time, this money? The UN system is a system made for and by governments. Why are we engaging with a system in which we are not represented and is beholden not to us but to its member states? Yes, "the international community must do more about HIV." But the international community doesn't exist as an institution, there are countries and countries have leaders. Imagine if all these resources expended by the community alone for this meeting in New York City had been devoted to national campaigns demanding that governments honor what they promised five years ago? Or towards building real infrastructures for national, regional and international advocacy on HIV/AIDS? Or training each other on how to push for political change?

I can hear Zackie Achmat's voice in my head calling me an ultra-leftist for refusing to deal with institutions to affect change. Well, Zackie and TAC engage with their government on a daily basis and have created a national infrastructure to press for political change. I am not suggesting that there is no use for the UNGASS meeting, particularly when it is part of a comprehensive political response to the AIDS crisis. However, for many people, the UNGASS meeting has a role that is isolated from any other kind of political activity and has taken on a significance that it doesn't deserve. For me, the frenzy around the UNGASS meeting represented an anti-political moment. The UNGASS's role, its real contribution, to paraphrase Arundhati Roy, is to defuse political anger and blunt the edges of political resistance.

How did we get here? Well, not to over-simplify, but I think that we've seen an NGO-ization of HIV/AIDS that has weakened or destroyed our ability to build a social movement to fight for our right to health, to be free of discrimination and violence, to the other services we need to stay alive and free from HIV infection. We've also seen people living with HIV/AIDS, sex workers, women, men-who-have-sex-with-men, ethnic minorities, young people, drug users who are also working in the field become essential monsters: that is they think and act as if the greater involvement of people with AIDS (GIPA) or their "vulnerable" group has a value in and of itself, as if they have some special purchase on knowledge or rights simply because of who they are instead of linking those rights to a responsibility to engage politically in a feminist, anti-racist, anti-homophobic, pro-sex, pro-harm reduction, and pro-poor struggle that links us in solidarity, in commonality with each other, with millions of other people for whom other struggles perhaps matter more than our own.

What would I love to see? Well, it would be great if we could have the chat that Vito Russo asked for in 1988. I'd like us to ask if the institutions and organizations we've built up are really working towards achieving political change or are actually stymieing it. How accountable are our NGOs to people living with HIV/AIDS and communities affected by the epidemic at the district level, the province, the country, the region, the planet? Are we creating institutions that seek to justify their own existence, their own organizational survival and expansion at the expense of challenging the powers-that-be: governments, UN agencies, drug companies, etc? Who is setting the agendas for our work? Are these agendas in the service of achieving specific, local political accountability or are they making calls for a more diffuse, generalized, international responsibility? Are we becoming carpetbaggers, itinerant technocrats, damn missionaries, toting our expertise around the globe trying to help people in other countries to solve their own problems or are we trying to promote local solutions to local problems by local people? Are we just talking about change, rather than mobilizing for it, trying to make it happen? Are we just managing change, trying to turn resistance into "a well-mannered, reasonable, salaried, 9-to-5 job," channeling the struggle into a three-day media event in New York City in May, a week-long international AIDS conference in Toronto in August, and endless series of meetings, reports, conference calls and email exchanges?

I also want to stop talking about GIPA-the greater involvement of people living with HIV/AIDS. I am sick of GIPA and will not promote it any longer. Roy Cohn, the vicious, nasty, conservative asshole had AIDS and he was gay to boot. Roy Cohn sent Julius and Ethel Rosenberg to the electric chair and sat at the right hand of Senator Joseph McCarthy in the 1950s when he persecuted hundreds of decent Americans for communist sympathies, whether or not they had then or ever been members of the Communist Party. He was not part of my community. Do women want to claim Margaret Thatcher as one of their own? Do gay men want to claim Ernst Rohm, commander of the Nazi storm troopers as a fellow fag? Do Africans want to claim Idi Amin or Hendrik Verwoerd among their kin? If your own sense of your history or politics is based on biology, serostatus, country of origin, gender, sexuality, well, get ready to get in bed with all of the folks mentioned above. This kind of identity politics excuses everything and accepts no political responsibility.

It's time we start asking each other: What are you doing to promote the reproductive and sexual rights of women; to fight rape and violence against women; to promote access to HIV/AIDS prevention, care and treatment, to education, to safe and affordable housing and other basic services regardless of gender, sexuality, ethnic origin, regardless of ability to pay? What are you doing to legalize methadone, buprenorphine, syringe exchange and reform drug and narcotics regulation, protect sex workers from harassment, ensure they have working conditions that don't endanger their health or well-being? What are you doing to ensure that young people get comprehensive information about sexuality, STIs and HIV/AIDS?

Let's base our personal commitment to the fight against HIV/AIDS not on who we are, but what we do for others and not just for those who are like us, but those who are different in whichever way each of us chooses to categorize it. If we hold our organizations accountable, we have to hold ourselves accountable too.

So, I am one pissed off sister. I am angry at the epidemic, but angry about a machine we've created that drains the politics out what is happening around us, that, in fact, fosters both an institutional and personal anti-politics that fuels the fires of HIV/AIDS. I don't know when we'll all get the chance to talk, but we need to have a conversation about where we're going and how we're going to get there. Otherwise, we'll see each other at the next UNGASS in another five years' time and realize we've been driving around in circles, never recognizing we've seen this all before, our journey hasn't even started and the car is, sadly, out of gas.

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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.