A History of the People With AIDS Self-Empowerment Movement
Two pioneers for people with AIDS, Michael Callan on the East Coast and Dan Turner on the West Coast, decided to record the beginnings of the PWA movement while it was still fresh in their memories. Join them and their colleague, photographer Jane Rosette, in a written and pictorial journey of the way it was in the 1980s when the HIV and AIDS movement was young.
We thought it important to record the founding of the People With AIDS (PWA) self-empowerment movement now, while our memories are not totally fogged over. Many who were there are gone now, and those of us who are left feel a responsibility to those generations of People With AIDS who will follow to explain how a movement was born; a movement based on the breathtakingly obvious concept that People With AIDS ought to participate in the decisions that directly affect our lives.
The founding of the PWA self-empowerment movement is largely a tale of two cities: San Francisco and New York. It is sad that the first "comprehensive" history of AIDS in America, And the Band Played On, omits or demeans the PWA self-empowerment movement. And so, to the best of our abilities, we will tell our own history herein so that future generations may understand how we got here from there.
The Spirit of San Francisco
Bobbi Campbell, diagnosed in September 1981, was one of San Francisco's first cases of AIDS. He was the first person with AIDS to go public as a PWA. At the beginning of 1982, Bobbi began an important column in the San Francisco Sentinel that explained what he was going through and offered recommendations for others. Dan Turner was diagnosed in February 1982. Dr. Marcus Conant suggested that Bobbi and Dan get together to share their experiences. They met at Dan's house in the Castro hills. The seed of what was to become People With AIDS San Francisco -- indeed, the concept of PWA self-empowerment itself, had been planted. Dan remembered clearly that Bobbi prominently sported a button with a simple but powerful message: "SURVIVE."
Cleve Jones asked Dan to speak at Harvey Milk's birthday party. Castro Street was closed off and Dan gave his first speech as a publicly-identified PWA. His message contained three points: "Stay informed. Be cautious, but not paranoid. And be supportive." The crowd cheered when Dan announced that he had just run a marathon after completing nine chemotherapy treatments. This was the beginning of many public speaking engagements for Dan and Bobbi.
Two important events took place at about the same time. Dr. Conant and Dr. Paul Volberding had requested that Bobbi and Dan attend what proved to be the founding meeting of the KS/AIDS Foundation in San Francisco. (The KS/AIDS Foundation had grown out of the AIDS Hotline founded by Cleve Jones and Dr. Conant.)
Shortly thereafter, Bobbi and Dan invited a few other people with AIDS to attend a meeting of what became People With AIDS San Francisco, the first organization of, for, and by people with AIDS (and ARC). In the early days, Dan, Bobbi and a few others became "star cases," called upon by doctors and the media to do many public speaking engagements. Out of this grew the important notion that PWAs should be an integral part of AIDS service organizations. As a result, People With AIDS San Francisco was asked to choose which PWAs should be on which boards. Bobbi Campbell was added to the KS/AIDS Foundation's national Board of Directors and Dan Turner was elected to the San Francisco KS/AIDS Foundation Board. Bobby Reynolds, who had temporarily dropped out of the early PWA San Francisco group, was eventually added to the board of the Shanti Project.
On May 2, 1983, the first of many candlelight marches, led and organized by people with AIDS, took place. The goal of the march was to bring attention to the plight of People With AIDS and to remember those who had died. PWAs who organized the march included Gary Walsh, Mark Feldman, Chuck Morris, and Bobbi Campbell (who, according to Dan Turner's diary, gave the "Hope" speech). This march was the first time PWAs marched behind a banner proclaiming what was to become the motto of the PWA self-empowerment movement: "FIGHTING FOR OUR LIVES."
On May 23rd, People With AIDS San Francisco met and voted to send Dan Turner and Bobbi Campbell to a conference in Denver in June 1983. This momentous meeting provided the spark for what was to become the PWA self-empowerment movement. The "FIGHTING FOR OUR LIVES" banner made its way to Denver for the Fifth National Lesbian/Gay Health Conference, which included the Second National Forum on AIDS and the First National American Association of Physicians For Human Rights (AAPHR) Symposium. It was at this historic gathering that the founding of the national PWA movement occurred and the banner was used in the presentation of the "Denver principles."
Meanwhile, Back In New York ...
It is important to remember that AIDS was not always called AIDS. In the early days, a number of names for this plague were proposed. But, in late 1981 and early 1982, the name of choice was either G.R.I.D. (Gay-Related Immune Deficiency) or simply "it." One had "it." "GRID," and eventually "AIDS," were terms sloppily used to cover conditions ranging from lymphadenopathy through what is now called AlDS-Related Complex (ARC) to full-blown or "frank" AIDS. This is an important point to remember, since many of those who must be considered founders of the PWA self-empowerment movement turned out not to have what we would now call frank AIDS. But at the time, no one much cared about the distinctions and, as it proved, the energy of those with lymphadenopathy and ARC provided much needed continuity from generation to generation.
One of the first New York City groups of People With AIDS was formed by Michael Callan and Richard Berkowitz. The call for a group for PWAs came as a result of their controversial article in the New York Native in November 1982 entitled "We Know Who We Are." The group was called Gay Men With AIDS. The stated goal of GMWA was "to support each other by sharing our personal experiences, our strength, and our hope." This turned out to be primarily an emotional support group, as opposed to a political group. Also in the fall of 1982, Mike and Richard met several other people with AIDS at one of the first, if not the first, support groups in New York City. It was primarily peer-run, with non-intrusive assistance from Dr. Stuart Nichols of Beth Israel Medical Center. This support group included Phil Lanzaratta, the "granddaddy" of the New York PWA movement. Phil was New York City's first publicly-identified PWA. He did a number of TV and print interviews and wrote a seminal firsthand account of living with AIDS for Christopher Street magazine. Again, Stuart Nichols' group was primarily an emotional support group, not a political group. It seemed that we all had our hands full staying alive; it didn't occur to us to organize politically.
Some time in the summer or late fall of 1982, several of us PWAs (note: the acronym "PWA" hadn't been invented yet; we were "AIDS victims" or "AIDS patients" back then) became aware of the New York AIDS Network, a group that met Tuesday mornings at the ungodly hour of 7:00 am at the East Village offices of the Community Health Project. The Network had been formed by Dr. Harold Kooden, Virginia Apuzzo and Dr. Roger Enlow, and had grown to provide the first organized political forum in which to share information and concerns about AIDS.
Several PWAs in New York were vaguely aware of Bobbi Campbell in San Francisco. He was the first person of whom many of us had ever heard who was courageous -- or foolish -- enough to publicly self-identify as a gay man with AIDS. We even he heard he had a weekly column in the Sentinel! How progressive those San Francisco queens are, we thought. We continued to follow his career sporadically in out-of-date copies of the Sentinel, purchased occasionally at the Oscar Wilde Memorial Bookstore. New York PWAs and PWARCs began to express growing frustration at attending too many GMHC forums in which those of us with AIDS would sit silently in the audience and hear doctors, nurses, lawyers, insurance experts, and social workers tell us what it was like to have AIDS. It seemed to occur to several of us simultaneously, including Artie Felson, Tom Nasrallah, Bill Burke, Bob Cecchi, David Goldstein, Pete Nalbandian, John Bernd, and others, that there was something wrong with this picture. The "real experts," we realized, weren't up there. It would be akin to having a conference on sickle cell anemia in which no blacks were asked to participate.
At a momentous AIDS Network meeting in late spring of 1983, plans were being made to attend the Second National AIDS Forum, sponsored by the Lesbian and Gay Health Education Foundation. Word somehow reached us that Bobbi Campbell and others in San Francisco were urging that the major AIDS service provider organizations in the various cities sponsor one or more gay men with AIDS and pay all their expenses to enable them to attend the conference.
The idea struck like a bolt of lightning. Until then, it simply hadn't occurred to those of us in New York who were diagnosed that we could be anything more than the passive recipients of the genuine care and concern of those who hadn't (yet) been diagnosed. As soon as the concept of PWAs representing themselves was proposed, the idea caught on like wildfire (with small pockets of resistance coming from some factions at GMHC). Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees. Credit must go to Alan Long (who recently died from AIDS) who, though healthy at the time, thought it was sufficiently important to support self-empowerment for PWAs that he personally underwrote the expense of three of us to attend the Denver conference.
The Historic Denver Conference
PWAs from all around the country gathered in a hospitality suite hastily arranged by conference coordinators Fran Miller, MPH; Dan Pfeffer; Helen Shietinger, R.N.; and Jeff Richards. Present, to the best of our recollection, were Bobbi Campbell, Dan Turner, and Bobby Reynolds from San Francisco (Mark Feldman had planned to attend, but died just prior to the conference. Though not a PWA, his lover, Michael Helquist, joined us for the final dinner in Denver to represent Mark's spirit); Phil Lanzaratta, Artie Felson, Mike Richard Berkowitz, Bill Burke, Bob Cecchi, Matthew Sarner and Tom Nasrallah from New York City; Gar Traynor from Los Angeles; someone named Elbert from Kansas City by way of Houston; and one individual from Denver whose name we unfortunately cannot recall. Bobbi quickly took charge. He articulated an ambitious political organization of PWA groups in all cities with large AIDS populations and proposed that eventually these local groups might organize to form a National Association of People With AIDS. New York's concerns about the etiological debate were incorporated into recommendations reflecting California's political and holistic concerns. With amazingly little friction, we came to consensus and drafted what have become known as the "Denver Principles."
Bobbi Campbell passed along Mark Feldman's semantic proposition that we should insist on being called "People With AIDS." Mark felt passionately that we should reject the terms "patient" or "victim." After some initial skepticism about the importance of this point, the New York contingent agreed to join California in insisting on "People With AIDS" or "PWA" as the label of choice. The hard work done, we then decided to storm the closing session and present our demands. In democratic fashion, we each declaimed one of the points until our whole list of recommendations and responsibilities had been publicly uttered for the first time. San Francisco had brought its banner, proclaiming "Fighting for Our Lives."
There wasn't a dry eye in the house, as a Washington Blade account of the event noted. Keynote speaker Ginny Apuzzo had to wait 10 minutes to permit the audience to recompose itself before proceeding. The theme of the Second National AIDS conference had been "Health Pioneering in the Eighties." Ginny, faced with the daunting task of following our emotionally devastating presentation, opined that if those health care providers in attendance were the health care pioneers, then those of us with AIDS were truly the trailblazers.
Keeping The Spirit Alive
We left Denver with the task of organizing a PWA Coalition in New York. Bobbi Campbell flew to New York with Artie Felson, Richard Berkowitz, and Mike Callan and, in the smoking section of that plane, they began to plot the overthrow of AIDS. Artie and Bobbi became close friends, and began to design a plan for a National Association of People With AIDS based on geographic representation.
Back in New York, an ad placed in local gay papers led to the formation of the first political organization of PWAs in New York, entitled PWA-New York. Unfortunately, in New York, Gay Men's Health Crisis (GMHC) initially resisted the notion of a rabble-rousing group of PWAs. In truth, many of the early PWA activists organized partly out of a frustration with GMHC's patriarchal (some thought patronizing) us/them approach. GMHC, the largest AIDS service provider organization, was the longest holdout in terms of implementing a policy of putting publicly-identified PWAs on their Board of Directors. After some bumpy starts and some friction, however, peace was made and today GMHC and the PWA Coalition New York enjoy a harmonious working relationship. Indeed, PWA Max Navarre sat concurrently on PWA-NY's and GMHC's Boards of Directors.
The first safer sex poster to appear in a bathhouse in New York was written, designed, paid for, and distributed by this first People With AIDS organization. In addition, the PWA groups born at the Denver meeting have marched in innumerable parades, testified before countless legislative bodies, and, in general, put a human face on AIDS. In San Francisco, Dan Turner helped design the wildly successful second safer sex poster, which drew the viewers' eyes to the sexy image of two nude men, one black and one white, embracing. This sex-positive poster changed the focus from a list of "don'ts" to a list of what one could do safely.
Back in San Francisco, after the Denver conference, PWA San Francisco continued to thrive. Debate often raged over whether the group would be more social or more political, and a happy medium was struck. Shanti Project board member Bobby Reynolds founded the Fun Squad, a group for people with AIDS and ARC that, among other things, sponsored massage nights.
On June 26, 1984, the San Francisco's Gay Freedom Day Parade was dedicated, for the first time, to people with AIDS. PWAs followed right behind Dykes on Bikes. Everyone cheered as they passed with the now famous "FIGHTING FOR OUR LIVES" banner. Bobbi Campbell amused the crowd wearing his lavender "AIDS Poster Boy" T-shirt.
In New York, the original PWA-New York came on hard times. Internal dissension, the deaths of many of the founders, and a generally inhospitable environment led to its dissolution. Out of the ashes of this group, the PWA Coalition was formed. Today, the PWA Coalition is a thriving organization with an annual budget approaching a half million dollars. It publishes the PWA Coalition Newsline, a 4-page monthly newsletter containing some of the best writing of, for, and by PWAs, PWARCs, and our supporters. The monthly run is 14,000 copies, which disappear like hot cakes upon publication. "Surviving and Thriving With AIDS: Hints for the Newly Diagnosed" is in its second printing. There are 20,000 copies in circulation all around the world and a revised edition is in the works.
The National Association of People With AIDS eventually became an arm of the National Lesbian and Gay Health Education Foundation. In particular, Bernice Goodman and Caitlin Ryan deserve credit for keeping the dream of a National Association of People with AIDS (NAPWA) alive, particularly after the deaths of Bobbi Campbell and Artie Felson. The birth of NAPWA was not an easy one, but one must give credit where credit is due. The currently thriving NAPWA, which includes PWAs from Boston, Chicago, New York, Atlanta, Columbus, Miami, Dallas, Houston, Chicago, Kansas City, Seattle, Vancouver, Los Angeles, and San Francisco, is the direct descendant of that momentous meeting in the mountains of Colorado.
In skits that opened and closed the original production of The AIDS Show, PWA and playwright Dan Turner recreated a dinner that took place in Denver to celebrate the founding of the PWA self-empowerment movement. An ice breaking, raucous, sex, drugs, and rock 'n roll quiz was initiated by Michael Callan and has continued as a tradition nearly every time PWAs from around the country gather to discuss political strategy. In Denver, after days of grueling political debate, we also blew off steam by taking turns being photographed in various compromising positions while wearing the nun's habit of Bobbi Campbell, a.k.a. Sister Florence Nightmare of the Sisters of Perpetual Indulgence. We would be remiss if we didn't at least allude to the conference romances between PWAs and PWArcs in Denver and at subsequent NAPWA gatherings. All safe sex, of course. For many, this was an opportunity to feel what it was like being intimate with another person with AIDS.
In the years that followed, new heroes arose to take the torch of PWA self-empowerment from the hands of those who fell to this devastating illness: Bobby Reynolds, Dean Sandmire, Paul Castro, John Lorenzini, Roger Lyon, Ron Carey, and Gary Walsh of San Francisco; David Summers, Griffin Gold, Michael Hirsch, Michael Calvert, Max Navarre of New York; Seth Newman and Alan Kikonis of Boston; Bruce Hall of Chicago; Amy Sloan of Indiana; and others whose names we have unfortunately forgotten.
There is no better way to end this brief history of the PWA self-empowerment movement than to quote in full the 17 principles articulated in Denver in 1983. They are as relevant and powerful today as they were then.
Recommendations for All People
We recommend that all people:
- Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
- Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.
We recommend that people with AIDS:
- Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda, and to plan their own strategies.
- Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
- Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
- Substitute low-risk sexual behaviors for those that could endanger themselves or their partners. We feel that people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.
Rights of People With AIDS
People with AIDS have the right:
- To as full and satisfying sexual and emotional lives as anyone else.
- To quality medical treatment and quality social service provision without discrimination of any form based on sexual orientation, gender, diagnosis, economic status, or race.
- 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.
- To privacy, to confidentiality of medical records, to human respect, and to choose who their significant others are.
- To die and to LIVE in dignity.
Note: Though both authors have died as casualties of AIDS, each was a well-respected pioneer in the fight against AIDS phobia. Their memories, and those of the others mentioned in this article, live on in the continued impact their work has in the daily lives of all people living with HIV and AIDS.
-- Michael Shernoff, M.S.W.
Back to the December 97 Issue of Body Positive Magazine.