POZ Exclusives : Sean Strub: What's Wrong With Our Movement

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December 5, 2005

Sean Strub: What's Wrong With Our Movement

I’m not saying big AIDS service groups’ funding fears, if they take an activist stance, are entirely irrational . But their timidity, paranoia and, in some cases, absolute cowardice is costing our movement integrity and lives. It extends the epidemic. It DISEMPOWERS US. It allows George Bush and his Republican right-wing moralists to define the debate and dictate AIDS policy. And, the parallel trends—fewer HIV board members, on the one hand, and increasing timidity in the activist arena, on the other—is damning.
But the Republicans are not the only problem in Washington. The Democrats haven’t exactly demonstrated awe-inspiring courage. And this, too, I blame on the silencing of people with HIV.

During the last presidential election, the Kerry campaign encouraged AIDS activists to keep a low profile.  So we didn’t cloud their quest for the Soccer Moms and Nascar Dads. John Kerry’s campaign had no prominent openly-HIV positive campaign official. Not one. There was no dedicated HIV/AIDS community liaison or issues person. There was no “Friend of John” with AIDS visibly advising Kerry, as Bob Hattoy did for Bill Clinton. The DNC and the Kerry campaign were ashamed of us. And we felt it. 

And how about the Human Rights Campaign—the largest gay rights organization in the country? It grew fat in the 1980’s and ‘90’s on the donations of people wanting to fight AIDS. But today HRC has relegated AIDS to a part-time priority. It’s one of several issues a single HRC  lobbyist handles. With their vast nationwide network, imagine how much more powerful our Campaign to End AIDS lobbying on Capitol Hill could have been if they had gotten behind it?

Perhaps worst of all in Washington is the self-proclaimed “national voice on AIDS”, the AIDS Action Council, a lobbying and advocacy group funded by the major AIDS service organizations. Shortly after they were founded, AIDS Action Council led the effort to raise AIDS issues in the 1988 presidential race, even holding press conferences in Iowa during their caucuses. 

But in the 2004 presidential race, they refused to endorse a non-partisan voter registration effort—AIDSVote—designed to empower people with HIV. That effort, like the Campaign to End AIDS, was also led by people with HIV and organizations dominated by people with HIV.

Think about that.  The self-proclaimed “National Voice on AIDS” would not even lend its name—let alone financial or organizational assistance—to help positive people participate in the process.  They were simply too cozy with or afraid of the Bush administration.  They did participate in fundraising events for a Pharma front group fighting the use of generic drugs in Africa and in events “celebrating”—their word—Bush’s second inaugural and Republican electoral successes.

I fear I may sound like I’m singling out one or two organizations or individuals.  I’m not.  These examples are symptoms of the broader problem. We, as a community, have minimized the voices of people with HIV and largely abandoned the Denver Principles mandate to fight the epidemic in partnership with people who have the disease. 

I want to say a particular word to the Executive Directors and Board members who may cringe or turn defensive or even angry at this criticism. I beg you to listen and hear what I am saying. I appreciate your work. I honor your work. I am alive, in part, because of your work. 

But if you recommit yourself and your agencies to the Denver Principles, you will become more effective in your work. Bring people with HIV into your organization’s decision-making—at all levels—and we can together reverse the disturbing twin trends of increasing stigmatization and decreasing empowerment.

I am sometimes told that the problem lies with people with HIV. That we must get more involved.  But for positive people to be involved as equals, rather than just as tokens, we need the commitment of our HIV negative allies. They must help guarantee us a seat at the table. Help guarantee we have the skills and training appropriate to actually contribute something.   

Many, many, people with HIV have the will and ability to serve on boards and provide leadership, if given the forum, support and training. Greater empowerment of positive people means less stigma.  Fewer HIV infections. Better health outcomes. 

With renewed vigor—and a recommitment to the Denver Principles—we could fight the Bush theocracy’s murderous policies, the criminalization statutes and the lackadaisical community leadership. That’s my message.

I want to leave you today with a modest challenge. Let’s urge all AIDS service organizations to adopt a plan mandating that 1/2 of their board members be people with HIV, including clients of their agencies.  

Housing Works is a huge agency—$40 million per year budget—and its by-laws mandate that at least one-third of its board members be HIV positive clients, but they also provide the training and support for those people with HIV to serve effectively.  It isn’t just about the numbers, but also about providing that training and support to create leadership amongst the formerly dispossessed.

I'm not suggesting a timetable; some organizations could do this quickly, others might require several years. But it’s a worthy and essential goal.

This is the time of year when many of us make charitable gifts to AIDS organizations. I urge you to be generous, but I also urge you to add a note to your check. Ask about HIV positive board representation and their plans for increasing it. That will help get the attention this issue needs.

In the darkest days of the epidemic, when we were all frightened, when we were all suffering, when we were all angry, we knew what to do and we did it. 

The Denver Principles are the Magna Carta of AIDS activism, our Declaration of Independence, Constitution and Bill of Rights rolled into one.

Returning to that original vision, heeding its clarion call and empowering positive people as equal partners, is our only hope for renewed life.

Lets embrace it.  Thank you.

Click here to read some POZ.com reader feedback on this speech. And send us your own opinions at news@poz.com.

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