People With AIDS

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The People With AIDS (PWA) Self-Empowerment Movement was a movement of those diagnosed with AIDS and grew out of San Francisco. The PWA Self-Empowerment Movement believes that those diagnosed as having AIDS should "take charge of their own life, illness, and care, and to minimize dependence on others". The attitude that exists throughout the movement is that one should not assume that their life is over and will end soon solely because they have been diagnosed with HIV or AIDS.

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[edit] Background

The PWA Self-Empowerment Movement grew out of San Francisco, where the AIDS Crisis is believed to have originated. Several persons from around the country were integral in founding the movement.

[edit] Bobbi Campbell and Dan Turner

Bobbi Campbell was a gay San Francisco resident who was one of the first diagnosed with AIDS, back in September 1981. By 1982, Bobbi began to write a column to be published in the San Francisco Sentinel, detailing his experience, and offering advice to others. During this time, Bobbi met with another man diagnosed with HIV, Dan Turner, on the recommendation of Dr. Marcus Conant.

The two met at Turner’s house in the Castro Hills. There, they laid the groundwork for what was to become known as People with AIDS San Francisco. After that, Turner was invited to speak at the birthday party of the late Harvey Milk, the openly gay city supervisor of San Francisco who was assassinated in 1978. On Castro Street, Turner, as well as Campbell, identified themselves publicly as having AIDS. Turner’s speech contained three points: To keep informed, be cautious (but not paranoid), and to be supportive. He went on to note that he had just completed a marathon, despite having completed nine chemotherapy treatments for Kaposi’s sarcoma. This was the first of many speaking events for Campbell and Turner.

Shortly afterwards, a meeting was held, at which the KS/AIDS Foundation was formed. At another meeting, Bobbi and Dan brought together a group which would form People With AIDS San Francisco. On 2 May 1983, the first candlelight march led and organized by people with AIDS was held. The stated goal was to draw attention to the plight of those with AIDS, and to remember those who had died. The march was led by a banner with the slogan “Fighting For Our Lives”, which became the motto of the PWA Self-Empowerment Movement.

Later that month, on 23 May 1983, People With Aids San Francisco voted to send Bobbi Campbell and Dan Turner to the National Lesbian and Gay Health Conference, at which the Second National AIDS Forum would be held.

[edit] New York Activists

On the East Coast, New York City served as another hotbed for the PWA Self-Empowerment Movement. One of the first People With AIDS groups in the east was formed by Michael Callen and Richard Berkowitz. Callen and Berkowitz met through their doctor, Dr. Joseph Sonnabend, in 1982. Initially, Callen and Berkowitz attended a peer support group for people with AIDS at Beth Israel Hospital, as well as meetings of Gay Men's Health Crisis.

The two grew frustrated with the meetings, however, and left to form Gay Men With AIDS. In the same year, they wrote an article for the New York Native titled “We Know Who We Are: Two Gay Men Declare War on Promiscuity”. In it, they put forth that AIDS was the result of not a single virus, but a cumulative overload of the immune system from sexual promiscuity and abuses of the body. Although their hypothesis on the cause of AIDS was dismissed by many, they did state that the more sexual partners you have, the higher the likelihood of contracting HIV/AIDS. And today, it has been shown that sexually transmitted infections not only increase HIV's infectivity, but also infectability by HIV.

Somewhere in mid to late 1982, several of Callen and his fellow people with AIDS became aware of the New York AIDS Network, a group which met every Tuesday morning at 7:00 AM at the East Village offices of the Community Health Project. The New York AIDS Network was founded by Hal Kooden, Virginia Apuzzo and Dr. Roger Enlow as an open political forum for the sharing of information related to AIDS.

As those in New York grew frustrated from listening to doctors, nurses, lawyers, insurance experts and social workers talk about AIDS, they realized they were hearing very little from the “real” experts. The decision was made to attend the Second National AIDS Forum at the National Lesbian and Gay Health Conference, which was sponsored by the Lesbian and Gay Health Education Foundation. By this point, some of the activists in New York learned of Bobbi Campbell and others in San Francisco. They learned that Campbell and others would be in attendance, and had been calling on organizations that provided AIDS services to sponsor gay men in order so that they may attend the conference. Alan Long, another person with AIDS, sponsored three of the New York activists to attend the conference in Denver.

[edit] The Denver Conference

At the conference, which had the theme “Health Pioneering in the Eighties”, people with AIDS from around the country met, gathering in a hospitality suite organized by Helen Shietinger, R.N. and Dan Bailey, who coordinated the event. Although an incomplete list, below are some of those who were in that room.

[edit] Those In Attendance

  • Bobbi Campbell
  • Dan Turner
  • Bobby Reynolds
  • Michael Helquist (Who was not a person with AIDS, but was the partner of Mark Feldman, who had planned to attend but died shortly before the conference)
  • Phil Lanazaratta
  • Artie Felson
  • Michael Callen
  • Richard Berkowitz
  • Bill Burke
  • Bob Cecchi
  • Matthew Sarner
  • Tom Nasrallah
  • Gar Traynor
  • Elbert (Last name unknown), of Kansas City
  • An individual whose name is unknown, from Denver

[edit] Debate

Bobbi Campbell took charge of the discussion. He believed in a political network of persons with AIDS groups in every major city. It was believed that these groups would then form a National Association of People With AIDS. There was very little friction between those in attendance, with only small arguments such as the terms patients and victims versus people with AIDS, the latter of which was agreed on as being the label of choice. This discussion led to the drafting of The Denver Principles.

[edit] The Denver Principles

Main article: The Denver Principles

The Denver Principles were drafted during the conference. They read:

We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’.
RECOMMENDATIONS FOR 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.
RECOMMENDATIONS FOR 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 which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.
RIGHTS OF PEOPLE WITH AIDS.
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 including 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.

The drafters of The Denver Principles stormed the closing of the conference in order to present their work. At the presentation, the San Francisco activists had brought the “Fighting For Our Lives” banner. The presentation brought the crowd to tears, and it was a full ten minutes until the audience was able to compose itself. The keynote speaker, Ginny Apuzzo, in response to the presentation, opened with, “if those health care providers in attendance were the health care pioneers, then those of us with AIDS were truly the trailblazers”.

[edit] After the Denver Conference

After the Denver Conference, four of the activists (Bobbi Campbell, Richard Berkowitz, Artie Felson, and Mike Campbell) began to plan for the National Association of People with AIDS while on the smoking section of the plane. Afterwards, the first of the political organizations planned was formed, called simply PWA-New York. While PWA-New York initially was met with resistance by the Gay Men’s Health Center, the two organizations learned to coexist.

PWA-New York is noted for designing the first safer sex poster to appear in New York bathhouses. Across the country, PWA organizations became active. In Denver, local PWA members took part in parades and lobbied in the legislature (In general, putting a human face on the disease). In San Francisco, posters similar to those in New York were distributed.

In June 1984, the annual Gay Freedom Day Parade in San Francisco was dedicated to people with AIDS. People With AIDS marched near the front of the parade, with Bobbi Campbell and the “Fighting For Our Lives” banner.

[edit] PWA Coalitions and National Organizations

By the mid-eighties, PWA-New York faced challenges. A negative environment, combined with the deaths of many founders, led to the group being disbanded. However, the New York activists were quick to rebound, forming the PWA Coalition. PWA Coalitions continue to exist today throughout the country. In 1987, the National Association of People With AIDS was incorporated as a 501(c)3 not–for–profit corporation to be the national voice of people with AIDS. Today, it is the oldest national AIDS organization in the United States and the oldest national network of people living with HIV/AIDS in the world.

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