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A History of the People With AIDS Self-Empowerment Movement

December 1997

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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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.


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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:

  1. 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.
  2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.

We recommend that people with AIDS:

  1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda, and to plan their own strategies.
  2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
  3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
  4. 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:

  1. To as full and satisfying sexual and emotional lives as anyone else.
  2. To quality medical treatment and quality social service provision without discrimination of any form based on sexual orientation, gender, diagnosis, economic status, or race.
  3. 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.
  4. To privacy, to confidentiality of medical records, to human respect, and to choose who their significant others are.
  5. 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.

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A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Body Positive. It is a part of the publication Body Positive.
 
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