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

But let’s be frank. We are also to blame. It is not all George Bush’s fault. We have allowed our AIDS service organizations and our community leadership to become politically neutered and institutionalized to the point where the voice of people with HIV has often become absent, or relegated to tokenism.

We have disempowered ourselves by retreating from one of the most important Denver Principles. 

The one calling on our  organizations to include people with HIV in all levels of decision-making, and I quote, “specifically to serve on the boards of directors” of those organizations.

The culture of these boards has changed dramatically since they were first founded. Originally, they were comprised almost entirely of people who were sick or those who thought they might be. When the HIV antibody test arrived, it forever divided the gay male world between those who were positive and those who were negative. 

But we also lost the unifying uncertainty of fear and, over time, the presence of people with HIV on these boards has lessened and lessened. I’m not saying fear is our savior. But unity is, and the Denver Principles can help us regain it.

AIDS has become a huge industry that has made careers, fame and fortune for many.   But the rush over the corpses and voices of people with HIV in the pursuit of power, institutionalization and fundraising has been disgraceful. Part of the reason is because of the lessened presence on these boards by people who were fighting for their own lives.

We did some research at POZ last week to see how people with HIV were represented on the boards of major AIDS organizations today. What we found is disturbing:

GMHC: Out of 13 board members, 2 are positive.
God’s Love: 26/1
APLA: 20/1
Chicago AIDS Foundation 40/2
Whitman-Walker 42/4
SF AIDS Foundation 16/6
Amfar: 25/1
And even of these few positive people on these boards, it should be noted that they are all chosen by HIV negative majorities and, in many cases, the people with HIV chosen to serve on boards are also employees of other AIDS-related agencies, both factors which can sometimes cloud or compromise priorities.

These groups were founded to confront and challenge a status quo that was killing us.  It still is, but the organizations we created to lead that charge have abdicated their responsibility to confront it.  What’s more, they have cast us out—us people with HIV—from their board rooms and that has been costly indeed.

As HIV positive representation on these boards declined, ASOs began to "tone it down" to qualify for as much money as they could grab from government sources. Advocacy has taken a back seat.  Prevention programs with integrity and results became secondary to those that could get funded.   Complicated and controversial, but important, issues--like fighting criminalization—have been abandoned.

AIDS service organizations have forgotten that part of their service they were founded to provide, perhaps one of the most important services they can provide today, is advocacy, activism and leadership in the communities where the epidemic is hitting hardest

The philosophy behind the Denver Principles pioneered an extraordinary model of partnership between the agencies and the communities they serve.  But from a pioneering model of partnership, many agencies are now reverting to the Denver Principles’ dreaded “victim” model.  

Is that what we want?  

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