[NOTE from Kenyon: I got this letter over a list belong to, and know Suzy’s work in the HIV/AIDS world pretty well. I thought this might be an interesting addition to conversation many folks doing work on HIV/AIDS and the rest of the Left.]
Open Letter to the Left and the AIDS Movement:
Two ships passing on our winding way to a new dawn
Wednesday, July 4, 2007
[Note: I am a queer, white, HIV-negative person who uses female pronouns and has non-transgender privilege. These ideas are the result of conversations with many people, but I wrote this as an independent AIDS community journalist and a leftist, and I don’t speak for any group. Many thanks to my mentors who gave me feedback yesterday! It has changed a lot.]
The US Social Forum blew my mind, it grew my mind like a wild weed, it heard my voice and it rendered me inaudible—I talked and cheered and chanted so much that I couldn’t speak above a whisper from Saturday morning until today. It gave me a feeling like, the Left is finally getting its shit together. I got a sense that people of color—especially immigrants, indigenous people, women of color and queer people of color—were like, “the Left is ours,” and were bringing the most innovative strategies and concepts to be seen in years, rocketing the whole thing into another dimension.
The speech by Andrea Smith of INCITE! Women of Color Against Violence at the plenary on Liberating Gender and Sexuality: Integrating Gender and Sexual Justice Across Our Movements—and the audience of hundreds’ overwhelming response to it—was one of the most inspiring moments of my life. Not only did Smith question the domestic violence movement’s reliance on the state to protect us, her organization’s work offers all our movements the building blocks of an alternative.
I’ve been an activist for 17 years (mostly on access to higher education and queer and AIDS issues), and I feel like this is what many of us have been hoping for, yet not daring to imagine. Could the Left really be shedding its massive layers of racism, sexism, and homophobia? But the most inspiring moments always leave room for us to grow. This is a moment of great possibility for the AIDS movement and the Left. I won’t make a list of reasons why the AIDS movement had moments of feeling marginalized at the USSF, but to illustrate this, I will say that HIV/AIDS was not mentioned once at the plenary on gender and sexuality.
For those of us in the AIDS movement, this kind of silence tugs at old wounds, because Reagan did not say “AIDS” out loud until 1987, by which time an average of nine Americans had died of AIDS for every day that he had been in office. Now, we have lifesaving medicines in the US and other rich countries, but about 8,500 people around the world die of AIDS every day, and according to the NAACP, every day 72 African Americans contract HIV.
My goal with this letter is to point toward the light the Left offers the AIDS movement now, and ways the Left can learn from the AIDS movement now. The Social Forum illuminates both, because without women of color at the center, neither will ever find its way—and without the innovative new strategies emerging now, we would all just be talking.
Life after nonprofits
INCITE’s second book, The Revolution Will Not Be Funded: Beyond the Non-Profit Industrial Complex, sold out all copies at the Forum, and its panel by the same name filled up so quickly that organizers had to post a sign on the door saying, “Please do not open – Fire Hazard!”—and still people squeezed in. Southerners on New Ground (SONG, a multiracial LGBT/queer group) held a workshop where participants also discussed the limits of the 501c3 model (for example, competition for funding between community groups; letting funders set your agenda; allowing college graduates to serve as front lines in communities they know nothing about or are themselves gentrifying; big nonprofits setting movement goals; grassroots groups not being taken seriously; self-perpetuation being valued over service and honesty, etc.) and exciting new ways to do what SONG called “free organizing.” There were also “hybrid models,” with some aspects of both the 501c3 and the free, such as a working board of directors with no staff, or having members vote on organizational decisions and pay dues. (For questions to ask yourself and help stimulate more ideas, see http://www.southernersonnewground.org/?p=53)
One attendee talked about her childcare collective, which charges only $75 every five months (for groceries). An activist from Louisville said that her community trusts her group more now that they’re not backed by a white funder from outside the community. An activist from LA told how the Garment Worker Center is moving from a paid-staff model to all volunteers, with mentoring from Brooklyn’s Sista II Sista.
In the AIDS movement, we know how the move from street action to institution-building meant that we had built the capacity to provide lifesaving services to our communities. Plus, AIDS organizations are the biggest employer of LGBT people in the US—and in some places, a provider of jobs to many people in our community who have a hard time finding work in a discriminatory environment due to their experience with prison, homelessness, drug use, or sex work, or because they’re trans or gender non-conforming or living with HIV.
But our institutions are now turning on their creators—people living with HIV—and turning them into passive “consumers” of services, as if your local AIDS service organization were the local mall and HIV is no longer political. And “AIDS, Inc.” took us off the streets, cooled off our activism. Who among us hasn’t feared losing our jobs if we speak at that demo, or been told protests are a relic from the past? At the Campaign to End AIDS, a major national mobilization in 2005, Sean Strub, the PWA founder of POZ magazine, listed the major AIDS advocacy organizations that had failed to endorse or support the campaign, and railed against the lack of HIV positive inclusion on nonprofit boards.
SONG members pointed out that whether or not we choose to find new ways of serving and organizing our communities, we’ll be forced to anyway, because our community-based nonprofits are dying. This especially speaks to the AIDS movement. Small HIV prevention and support organizations that Black, Latino, gay and other communities started 20 years ago are closing their doors all over the country because the federal money is being cut back to just cover medical care and HIV testing, not vital programs like condom distribution, street outreach, counseling, buddy programs, language interpretation, and housing. (For more info see http://www.poz.com/articles/401_11463.shtml)
The most inspiring and transformative HIV/AIDS program I’ve ever witnessed, Philadelphia’s TEACH Outside, has been on the chopping block several times this year. Run by John Bell, who was a leader in ACT UP for years and is an HIV positive, African American Vietnam vet in recovery who spent years in prison, TEACH Outside is a class for people living with HIV who are newly released from incarceration. John Bell teaches how to live healthy with HIV and strategies for dealing with life on the outside, mentors students in activism, and tells them to call him anytime—but the biggest challenge for students is dealing with the double stigma of prison and HIV. I asked him once if the program is more than just a class, and he said, “It has to be. Because people aren’t just unfeeling beings. Even though people have been incarcerated they’re still human beings. To allow that person to become a working member of society, we’re going to have to actually address the totality of their being. The emotional side, the spiritual side, the intellectual side.”
Philadelphia’s Project TEACH classes keep facing the axe because they are “psychosocial programs,” not medical programs. So what are we going to do about the totality of the human being when the government will no longer fund it? Let’s figure it out. The AIDS community should aim to be among those at the forefront of this effort, because our communities may have the most to lose, with lives depending on our services.
Protecting each other
We can also learn new ways to protect our communities from violence. At another Social Forum panel, the Young Women’s Empowerment Project (a youth leadership organization grounded in harm reduction and social justice organizing by and for girls and young women ages 12-23 impacted by the sex trade and street economies) from Chicago talked about defending each other from street violence without relying on the police, who offer their own forms of violence. Some of the ways they suggest creating conditions in which violence against women is unacceptable include solidarity among women (sisterhood in the hood), safe housing, allies who can deal with pimps, and self-defense training. However we do it, finding new ways to protect each other from violence is an urgent need for the AIDS community, because the police do not protect people who are most at risk for HIV, like trans and gender non-conforming people, sex workers, and drug users. And the link between HIV and violence—which messes with people’s ability to protect themselves from HIV—means that protecting our communities from violence is HIV prevention work.
Taking inspiration from each other’s movements
In the HIV/AIDS movement, we need to make sure that women of color and queer people of color are at the center, and also that HIV positive people are at the center. We need to take inspiration from this moment in the Left and be reminded that we can’t afford to compromise on taking the time to build new leadership among people directly affected by the issues, even when our time is urgently demanded to push for policy that can save millions of lives around the world. A strong movement is a social force that shifts policy in its wake or renders government decisions irrelevant by taking care of its own community’s needs.
We also need for the Left to understand that our leaders are still dying. And it’s mostly the people of color in our movement who are dying, for many reasons related to intersecting forms of oppression, but also because people with both HIV and hepatitis C have even more complex health challenges and treatment options than those with HIV alone. In other words, neither the Left nor the AIDS movement can afford to sleep on the issue of hepatitis C.
AIDS is now the leading cause of death among Black women aged 25 to 34. Nearly half of Black men who have sex with men are HIV positive. I’m not saying that people with HIV aren’t living full, healthy lives, with stigma being their most pressing HIV-related problem. But ACT UP Philly still has too many funerals. Within a few months several years ago, the New York City HIV/AIDS housing movement lost three beloved leaders—Joe Capestany and Joe Bostic of the New York City AIDS Housing Network (NYCAHN) and Keith Cylar, cofounder of Housing Works.
But it’s also a movement full of life. Have you ever been to a global AIDS conference? The Zapatistas’ Other Campaign (La Otra Campagna) was there last summer in Toronto. Korean activists were marching through the conference site against the impending US-Korea Free Trade Agreement. South Africans demanded treatment, Indian activists in bright colors chanted, “Big Pharma – Quit India!” and a Russian activist speaking at the closing plenary said, “Down with the imperialism of the pharmaceutical companies!” It was like the Social Forum, without the standing ovation (activists had to demand that people with AIDS be allowed to speak at the global AIDS conference).
And where else but the AIDS community have you seen heterosexual ex-drug users bond so closely with the most fabulously gender-bending queers? (This is not a rhetorical question, I’m sure it happens elsewhere, and I’d love to hear about it!) The AIDS movement at its best links together some of the most pressing issues of our time: homelessness, prison, the war on drugs, gender, sexuality, immigration, and displacement.
But if you want to tackle one thing, I’d say the Left can start with stamping out any tendencies toward HIV denialism, the idea that HIV does not really cause AIDS. While handing out flyers for the AIDS march at the Social Forum, my friend encountered some folks who said things like, “Well, if they would just stop taking those medicines that make them sick….” These comments were fairly insulting to my friend, who is HIV positive. This foolishness would not take root in the Left without our (the Left’s) willingness to let our intelligent distrust of pharmaceutical companies go uncomplicated by any understanding of the privilege many of us experience—not having to deal with HIV, and not living in communities whose health is compromised in so many ways by systemic racism, poverty, homophobia and transphobia. For more information about HIV denialism, please see AIDSTruth.org or the website of South Africa’s Treatment Action Campaign.
A moment of possibilities
Partly to push visibility of AIDS issues in the Left, and in the tradition of marches at the global AIDS conference, AIDS activists at the Social Forum decided to march up from the basement of the Atlanta Civic Center, through the lobby filled with people milling around t-shirts and literature, out the doors and past the tables outside. It was a fun, chaotic moment that people responded to with excitement and support. We stopped across from the Health Tent, where among the activists who joined us was Panama Vicente Alba, a longtime New York City labor and police brutality activist and former Young Lords Party member. I was thrilled and surprised to see him get on the mic (at the invitation of NYCAHN), because I’d never thought of him as an AIDS activist.
NYCAHN’s Jennifer Flynn enlightened me to the fact that Panama has been an AIDS activist for more than 15 years. “Needle exchange exists in the Bronx because of Panama,” she said, and I was struck by how within my own mind I have such a separation between my lefty world and my AIDS activist world that it has gotten me to where I’m putting people into boxes. Jennifer also pointed out that the Young Lords were well known for tackling tuberculosis, and for their understanding of how government neglect in communities of color leads to epidemics.
I had slept on the fact of Panama’s deep involvement with the campaign to demand HIV treatment for people on waiting lists in Puerto Rico. He had been in New Orleans at the HIV Prevention Leadership Summit in May, one of the activists whose graceful and somber protest interrupted a Bush administration speaker to draw attention to the crisis in Puerto Rico. “We know that more than a thousand people are on waiting lists for HIV medicines,” Panama told me. “But the mayor of San Juan said nobody died. As long as Puerto Rico is a colony of the U.S., this is the political reality that exists. We need a third party, outside the colonial government, to allocate the funds.”
The moment Panama united the AIDS movement and the Left was for me a moment of the clouds parting and the stars emerging to show our ships the way forward. Let’s take the opportunity now, with the excitement the Social Forum has hopefully instilled in us, to chart our courses a little closer together, share our stories, and really listen to each other.
Editor, Solidarity Project, Community HIV/AIDS Mobilization Project (CHAMP), 2006 – present
Independent AIDS community journalist and active/inactive member of ACT UP Philly, 2004 – present
Assistant Editor, POZ Magazine, 2001 – 2004
Founding member, Student Liberation Action Movement (SLAM), City University of New York, 1995/96 – 2001
Member, New York Local, Love and Rage Revolutionary Anarchist Federation, 1995 – 98