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People With AIDS (PWA) means " person with HIV/AIDS", also sometimes phrased as, Person Living with AIDS. It is a term of self-empowerment, adopted by those with the virus in the early years of the pandemic (the 1980s), as an alternative to the passive implications of "AIDS patient". The phrase arose largely from the
ACT UP AIDS Coalition to Unleash Power (ACT UP) is an international, grassroots political group working to end the AIDS pandemic. The group works to improve the lives of people with AIDS through direct action, medical research, treatment and advocacy, ...
activist community, however use of the term may or may not indicate that the person is associated with any particular political group. The PWA self-empowerment movement believes that those living with
HIV/AIDS Human immunodeficiency virus infection and acquired immunodeficiency syndrome (HIV/AIDS) is a spectrum of conditions caused by infection with the human immunodeficiency virus (HIV), a retrovirus. Following initial infection an individual ...
have the human rights to "take charge of their own life, illness, and care, and to minimize dependence on others". The predominant attitude is that one should not assume that one's life is over and will end soon solely because they have been diagnosed with HIV/AIDS. Although most of the earliest organizers have died, and organizations dissolved or reconfigured into
AIDS service organization AIDS service organizations are community-based organizations that provide support for people affected by HIV/AIDS. This article focuses on HIV/AIDS service organizations in the United States only. There is a huge variety of these organizations in o ...
s (ASOs), the self-empowerment and self-determination aspects of the movement continue.


History


New York HIV/AIDS activists

In New York City in 1982, one of the first People With AIDS (PWA) groups in the east was formed by
Michael Callen Michael Callen (April 11, 1955 – December 27, 1993) was an American singer, songwriter, composer, author, and AIDS activist. Callen was diagnosed with AIDS in 1982 and became a pioneer of AIDS activism in New York City, working closely with h ...
and
Richard Berkowitz Richard Berkowitz (born October 6, 1955) is a gay American author and activist best known as an early advocate of safe sex in response to the AIDS crisis among gay men in the 1980s.Gross, Jane (September 22, 1985)Homosexuals stepping up AIDS ed ...
. Callen and Berkowitz met through their doctor, Joseph Sonnabend. 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 GMHC (formerly Gay Men's Health Crisis) is a New York City–based non-profit, volunteer-supported and community-based AIDS service organization whose mission statement is to "end the AIDS epidemic and uplift the lives of all affected." Hist ...
. After some time, however, the two grew frustrated with the meetings, 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, called the Immune Overload Theory, from sexual promiscuity and abuses of the body. This idea was proven wrong. (See
HIV/AIDS denialism HIV/AIDS denialism is the belief, despite conclusive evidence to the contrary, that the human immunodeficiency virus (HIV) does not cause acquired immune deficiency syndrome (AIDS). Some of its proponents reject the existence of HIV, while othe ...
.) In mid-to-late 1982, Callen, Matthew Sarner, and several other people with AIDS became aware of the New York AIDS Network, which met every Tuesday morning at the East Village offices of the Community Health Project. The New York AIDS Network was founded by Hal Kooden,
Virginia Apuzzo Virginia "Ginny" Apuzzo (born June 26, 1941) is an American gay rights and AIDS activist. She is a former executive director of the National LGBTQ Task Force. She served as executive deputy of the New York State Consumer Protection Board and as ...
and a doctor, 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.


San Francisco

Bobbi Campbell Robert Boyle "Bobbi" Campbell Jr. (January 28, 1952 – August 15, 1984) was a public health nurse and an early United States AIDS activist. In September 1981, Campbell became the 16th person in San Francisco to be diagnosed with Kaposi's sarco ...
was a
gay ''Gay'' is a term that primarily refers to a homosexual person or the trait of being homosexual. The term originally meant 'carefree', 'cheerful', or 'bright and showy'. While scant usage referring to male homosexuality dates to the late 1 ...
San Francisco man who was diagnosed with AIDS in September 1981, making him one of the first people in the US to be diagnosed with AIDS. On the recommendation of
Marcus Conant Marcus Augustine Conant (born May 11, 1936, in Jacksonville, Florida) is an American dermatologist and one of the first physicians to diagnose and treat Acquired Immune Deficiency Syndrome (AIDS) in 1981. He helped create one of the largest priva ...
, a doctor specializing in AIDS care, Bobbi began meeting with another man diagnosed with HIV, Dan Turner. The two met at Turner’s house in
the Castro The Castro District, commonly referred to as the Castro, is a neighborhood in Eureka Valley in San Francisco. The Castro was one of the first gay neighborhoods in the United States. Having transformed from a working-class neighborhood throug ...
. 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 posthumous birthday party of
Harvey Milk Harvey Bernard Milk (May 22, 1930 – November 27, 1978) was an American politician and the first openly gay man to be elected to public office in California, as a member of the San Francisco Board of Supervisors. Milk was born and raised in N ...
, the openly gay city supervisor of San Francisco who had been assassinated in 1978. On Castro street, Turner, as well as Campbell, identified themselves publicly as having AIDS. Turner’s speech urged people to do three things: keep informed, be cautious but not paranoid, and be supportive. This was the first of many speaking events for Campbell and Turner. Shortly afterwards, a meeting was held to form the KS/AIDS Foundation, which later became the
San Francisco AIDS Foundation The San Francisco AIDS Foundation (SFAF) is a nonprofit organization dedicated to providing services for people with HIV/AIDS, with a mission to end the AIDS epidemic in the United States. They were founded in 1982, at the beginning of the AIDS ...
. In May 1983, the first
AIDS candlelight march Human immunodeficiency virus infection and acquired immunodeficiency syndrome (HIV/AIDS) is a spectrum of conditions caused by infection with the human immunodeficiency virus (HIV), a retrovirus. Following initial infection an individual m ...
led and organized by people with AIDS was held. The stated goal of the march 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 movement. Later that month, on 23 May 1983, People With AIDS San Francisco voted to send Campbell and Turner to the
National Lesbian and Gay Health Conference National may refer to: Common uses * Nation or country ** Nationality – a ''national'' is a person who is subject to a nation, regardless of whether the person has full rights as a citizen Places in the United States * National, Maryland, ce ...
, at which the Second National AIDS Forum would be held.


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.


Debate

Bobbi Campbell took charge of the discussion. He believed in a political network with groups of AIDS infected people 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.


The Denver Principles

The Denver Principles were drafted during the conference. They read: 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 brought the "Fighting For Our Lives" banner. The presentation brought the crowd to tears, and it was 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".


After the Denver Conference

After the Denver Conference, five of the activists (Bobbi Campbell, Richard Berkowitz, Artie Felson, Matthew Sarner, 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 Crisis The GMHC (formerly Gay Men's Health Crisis) is a New York City–based non-profit, volunteer-supported and community-based AIDS service organization whose mission statement is to "end the AIDS epidemic and uplift the lives of all affected." Hist ...
, 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.


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. It was the oldest national AIDS organization in the United States and the oldest national network of people living with HIV/AIDS in the world when on February 14, 2013 NAPWA declared bankruptcy and announced it was suspending operations.


The Denver Principles Project

In 2009, the National Association of People with AIDS (NAPWA) and '' POZ'' magazine announced a new initiative called The Denver Principles Project. The Denver Principles Project will recommit the HIV community to the Denver Principles and dramatically increase NAPWA's membership. With a vastly increased membership, NAPWA will be better able to advocate for effective HIV prevention and care, as well as to combat the stigma that surrounds HIV and impedes education, prevention and treatment of HIV.


See also

*
Think Positive “Think Positive” is a Lebanese association (Registration number 958) established in 2009 by young activists who have been working hard to serve their society by raising awareness among youths and marginalized groups. It started its activities ...
— organization in Lebanon


References

* https://web.archive.org/web/20090209192902/http://napwa.org/ Retrieved 22 January 2006. * https://web.archive.org/web/20050527203527/http://www.dallasvoice.com/articles/dispArticle.cfm?Article_ID=3818 . Retrieved 24 June 2005. * http://members.aol.com/sigothinc/pwahist1.htm . Retrieved 24 June 2005. * https://web.archive.org/web/20021126164729/http://adam-carr.net/002.html . Retrieved 24 June 2005. * http://www.actupny.org/documents/Denver.html . Retrieved 24 June 2005. * http://www.napwa.org/denverprinciplesproject/index.shtml . Retrieved 10 March 2009.


External links


People with AIDS Coalition records, 1981-1993
Manuscripts and Archives, New York Public Library. {{AIDS HIV/AIDS activism HIV/AIDS in the United States 20th century in San Francisco LGBT culture in San Francisco