December 5, 2005

Sean Strub: What's Wrong With Our Movement

Way back in 1983, a small, courageous group of guys with AIDS—including San Francisco's Bobbi Campbell—met at a gay health conference in Denver and wrote what has come to be known as The Denver Principles. 

Do you remember the Denver Principles? Written at a time of great social fear and political hysteria, they spelled out the rights and responsibilities of people with AIDS. 

Back then, the average survival between diagnosis and death was mere months, although many died within weeks or days of a diagnosis. Despite that terrible prognosis, these men asserted an identity for those who had the disease. I quote:

“We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”

They demanded the right to, quote, “be involved at every level of decision-making and, specifically, to serve on the boards of directors of provider organizations."

They also articulated responsibilities including, quote: “people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.”

It was a powerful and radical concept.  In the history of humankind, never before had sufferers of a disease united to assert their rights. When Bobbie, Michael Callen and the other guys stormed the podium at a gay health conference, to read their manifesto, they got a ten minute standing ovation.  Ginny Apuzzo, the conference co-chair, said “there wasn’t a dry eye in the house." Those present knew history was being made at that moment.
 
The Denver Principles expressed a fundamental truth: to be successful, the fight against the epidemic must include the people who have the disease as equal partners in the battle.

That model empowered our community to create a massive AIDS service delivery system, from scratch, in a remarkably short period of time under difficult circumstances. 

Do you remember the horrific stigma so many of us suffered during those earliest years?  When those who hated and feared us sought to shame us into invisibility?  To even quarantine and incarcerate us?  

When they would not work at our side, want us to live in their house, touch their dishes, use their towels or hold their children, it was our empowered voice that educated them. When the nation's political leadership failed to address the emerging crisis—and was content to watch us die—our collective empowerment gave us the political muscle to force change.

When we focused on empowering people with HIV, that’s when we were truly embracing life. But today, our focus on empowerment has become a slogan rather than a system. So our political muscle has atrophied, paving the way for greater stigmatization and disempowerment.

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