Gay History Shows the Power of Defining Ourselves
The first people with AIDS chose language that supported health and resilience.
Posted Oct 04, 2018
It took enormous courage and audacity to push back against the mountain of shame our fellow Americans expected us to bear silently as the price of being what they considered abominations.
A group of gay men with AIDS from New York and San Francisco met during the Second National AIDS Forum, held in Denver in 1983 in conjunction with the Annual Lesbian and Gay Health Conference, and created a document that would literally shape the world’s response to AIDS.
Bobbi Campbell—San Francisco “K. S. Poster Boy,” Sister of Perpetual Indulgence, and nurse—took charge of the room as a dozen people with AIDS met together in a hospitality suite during the conference to talk about how they might organize themselves. They made plans for a coalition of political groups in all the cities with large AIDS populations, proposing that the local groups join one another in forming a national group.
Campbell also conveyed the wish of his fellow San Franciscan, Mark Feldman, who succumbed to AIDS just before the conference, that terms like patient and victim should be rejected because they were disempowering. It took a bit of convincing, but the New York contingent joined the group from California to insist that those with the disease be known simply as “people with AIDS” or “PWAs.”
The PWAs who met in Denver realized they shared the same frustration with not being listened to by their health care providers—or even, too often, by those who were providing services to them in the new AIDS organizations that had mostly been started by gay people. They drafted a manifesto known as the “Denver Principles,” a series of rights and recommendations for health care providers, AIDS service organizations, and people with AIDS themselves.
The Denver Principles became the charter of the movement for PWA self-empowerment. Among them was the recommendation that people with AIDS “be involved at every level of AIDS service organizations,” and that they retain the right “to full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment, and to make informed decisions about their lives.”
These gay men with AIDS were not a passive lot. As they put it in the preamble of the Denver Principles, “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.’”
POZ magazine founder and Body Counts author Sean Strub was already a legendary direct-mail fundraiser in New York for LGBT organizations when he joined (and raised big bucks for) ACT UP/New York. He said during an interview for my book Stonewall Strong in Milford, Pennsylvania—where he is mayor—that the creation of the Denver Principles “was not only the first time a group of PWAs got together to strategize politically, but the first time in the history of humanity that a group of people with a disease gathered together to have a political voice in decisions that would affect their lives.”
Then again, it was radical for homosexuals, considered at the time to be mentally ill, to challenge the psychiatric profession—and win, as we had in 1973, when the American Psychiatric Association removed homosexuality from its list of mental illnesses. That victory had propelled the gay equality movement from arguing to be accepted to claiming our right to exist.
In too many quarters, as the fear and bigotry unleashed by AIDS amply demonstrated, it was a radical act simply to say gay men’s humanity was equal to that of heterosexuals.
Strub pointed out that when New York musician and longtime AIDS activist and survivor Michael Callen interviewed PWAs for his 1990 book Surviving AIDS, he found that long-term survivors had three things in common: they could define a purpose for their lives, a reason they wanted to survive. They believed that survival was possible. And when asked what they had done to treat their HIV infection, the length of their list said everything.
“Those who were living long had longer lists,” said Strub. “They were the seekers, the ones going out and seeking things that might potentially be helpful to them.”
He added what he considers a fourth factor. “I think maybe the piece Michael didn’t have in there that became enormously important in ACT UP—and I think feeds one’s resilience—is being part of a community.”
Noted HIV-AIDS advocate and ACT UP/New York activist Peter Staley agrees. For him, as for thousands of gay men, finding so many others who rejected victimhood changed—and probably saved—his life. Staley believes the supportive, mutually affirming, socially and politically engaged community he found in ACT UP still exists.
“Even though a lot of people say they have less sense of community these days,” said Staley, “one thing that never died down was the indignation. I think whatever got lit in 1987 has stayed pretty bright on the indignation front. As a people now, we will not be denied. And that is history. We know that if we are indignant and angry and push all the political levers that we know we have, that we’ve used in the past and used successfully, we can push back.”
HIV-AIDS taught gay people that we can push back against bigotry and injustice—and win. It also taught us that we can author our own story, not have others tell it about us—or, worse and most often, not even be included in traditional histories.
We, as individuals and as a community, can choose to tell our story as a tale of woe and victimhood. But that denies the facts of our experience and history.
Instead, we can claim our heroic legacy and tell our story as a tale of courage, resilience, and resistance against all that would oppress us—whether it’s homophobic politicians, the medical establishment, a deadly health crisis, or, most perniciously, our own fear.