Being Alive, Los Angeles; May 1998
Walt Senterfitt

Introduction

As PWA/HIV organizations face an uncertain future in the time of change and "paradigm shift," it is useful to look back at whence we came. The first organized statement of the principles our movement embodied was prepared by a small group of PWAs from several cities meeting in Denver in 1983.

The late Michael Callan, of New York City and later Los Angeles, was active in this meeting and wrote down some of his recollections a few years later. Here are brief excerpts. (The full article can be found in the December 1997 issue of Body Positive, the newsletter of the New York PWA Coalition. You can find them at their Web Site: http://www.thebody.com/bp/dec97/hist.html).

"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.

"PWAs from all around the country gathered in a hospitality suite hastily arranged by conference coordinators. Bobbi Campbell [of San Francisco, who was likely the first PWA to be vocally public about his diagnosis and about the need of PWAs to speak for themselves] quickly took charge. He articulated an ambitious political organization of PWA groups in all cities with large PWA 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 [debates over the cause of AIDS] 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 PWAs had brought their 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 ten 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."

The Denver Principles - 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. (Remember that HIV and the first proof that AIDS was an infectious disease would not be discovered for two more years.)

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 involved 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, confidentiality of medical records, to human respect, and to choose who their significant others are.

5. To die and to LIVE in dignity.

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