Sean Strub, POZ's founder and advisory editor, advocates for a renewed commitment to the empowerment of people with HIV/AIDS during remarks at the 2008 United States Conference on AIDS.
In 1983, 25 years ago this past summer, a small group of people with AIDS met at a gay-health conference in Denver, Colorado, and wrote a document now known as the Denver Principles.
Written at a time of great social fear and political hysteria, the Denver Principles spells out the rights and responsibilities of people with AIDS.
Back then, the average survival between diagnosis and death was mere months; many died within weeks or days. Despite that terrible prognosis, this handful of people with AIDS 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 be involved at every level of decision-making, from shaping government programs to involvement in prevention campaigns to meaningful roles on staff and in the governance of organizations providing services to us and in response to the epidemic.
It was a powerful and radical concept. In the history of humankind, never before had sufferers of a disease united to assert their rights in this way.
Near the end of the health conference, they stormed the podium to read their manifesto under a banner that read, “Fighting For Our Lives.” They got a ten-minute standing ovation. The conference cochair said, “There wasn’t a dry eye in the house.” Those present knew history was being made at that moment.
Indeed it was, as their revolutionary document profoundly influenced the development—in a remarkably short period of time—of a massive AIDS service delivery system, which sought to fill the void left by traditional medical and social service organizations that were too scared or prejudiced to serve people with HIV/AIDS.
Many of the organizations and efforts represented at this conference and in this room can trace their origins to the empowerment philosophy embodied in the Denver Principles.
The Denver Principles expressed a fundamental truth: to be successful, the fight against the epidemic must include—as equal partners in the battle—the people who have the disease.
From the earliest days of the epidemic, we have had to fight horrific stigma against those who hate or fear us. But when they would not allow us to hold their children, work at their side, touch their dishes, use their towels or live under the same roof, 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—it was our empowered voice that gave us the political muscle to force change.
But today, all too often our focus on empowerment is a slogan rather than a system. One only needs to look at the invisibility of AIDS in this year’s presidential contest to see how our political muscle has atrophied, which has paved the way for greater stigmatization and disempowerment.
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comments 1 - 3 (of 3 total)
Brian G., Houston TX, 2008-09-25 21:52:22
It's good to see this sort of encouraging speech. Now we need to back it up with mentoring to prepare people with HIV to participate on boards. It's one thing to want to get involved, it's another to have the opportunity to get involved in a meaningful way.
Greg Noone, Patchogue, LI, 2008-09-25 12:56:36
Preach on, Sean.
If I may, I agree with you (for a change) 100%.
Now can we get back to work on providing HIV/AIDS services funding in the UNITED STATES?
Oh, just to let you know, Sean, not all of us live in the City - your neighbors 20 miles to your east on Long Island got a whopping million dollar cut to our Ryan White budgets!
So please, I am thrilled for Housing Works, but can anyone there tell me if you will serve PWAs who live in Nassau and Suffolk counties?
david krakowski, Cleveland, 2008-09-25 11:22:07
We have seen how rapidly the government responds to financial calamity (how many billions and counting to dat...???) Human calamity is simply not as important. Being and Having takes priority over Being and Becoming.
"I'm HIV positive and diabetic (as well as have high cholesterol) and some of my meds specify taking them with 'high fat foods' which I have to do twice a day. I've eaten as healthy as possible, but when it comes to high fat foods, I am in a quandary...about what to eat sometimes..."
