This article has multiple issues. Please help improve it or discuss these issues on the talk page . (Learn how and when to remove these template messages)
|
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 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 have the human rights to "take charge of their own life, illness, and care, and to minimize dependence on others".[ This quote needs a citation ] 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 organizations (ASOs), the self-empowerment and self-determination aspects of the movement continue.
In New York City in 1982, one of the first People With AIDS (PWA) groups in the east was formed by Michael Callen and Richard Berkowitz. 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.
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.)
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 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.
Bobbi Campbell was a gay 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, 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. 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, 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. In May 1983, the first AIDS candlelight march 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, at which the Second National AIDS Forum would be held.
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. Those in attendance included:
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. [2]
The Denver Principles were drafted during the conference:
We condemn attempts to label us as "victims," a term that implies defeat, and we are only occasionally "patients," a term that implies passivity, helplessness, and dependence upon the care of others. We are "People With AIDS."
Recommendations for all people
Recommendations for people with AIDS
Rights of People With AIDS
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". [2]
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 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.
By the mid-1980s, 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. [3]
In 2009, the National Association of People with AIDS (NAPWA) and POZ magazine announced a new initiative called The Denver Principles Project. [4] The Denver Principles Project will recommit the HIV community to the Denver Principles and dramatically increase NAPWA's membership. [4] 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. [4]
The PWA Society in Vancouver, Canada, was one of the first advocacy groups to focus on the needs of AIDS patients. [5] The organization devoted a great deal of effort to supporting and advocating for people with AIDS, including sending blood samples to the United States for testing because no facilities existed in Vancouver at the time and promoting alternative therapies through their Community Health Fund. [6] This led to the formation of a Vancouver chapter of ACT UP, a more direct action-oriented activist group. [7] Despite challenges faced by members of the lesbian community, the PWA Society persisted in their partnership with the LGBTQ+ community to fight for funding and awareness of the disease. [8] Activist Cynthia Brooke notes that she faced challenges as a lesbian advocate, but the partnership between gay men and lesbians persisted within the ACT UP Vancouver chapter. The PWA Society's early efforts in the fight against AIDS in Vancouver remain historically significant and ongoing. [9] [10] [11] The Canadian AIDS Society is overseen by a board of directors, which includes two representatives from each region of Canada, one of whom is required to be HIV-positive. [12]
AIDS Coalition to Unleash Power 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, and working to change legislation and public policies.
The GMHC 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." Founded in 1982, it is often billed as the "world's oldest AIDS service organization," as well as the "nation's oldest HIV/AIDS service organization."
Michael Callen 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 his doctor, Dr. Joseph Sonnabend, and Richard Berkowitz. Together, they published articles and pamphlets to raise awareness about the correlation between risky sexual behaviors and AIDS.
Lani Kaʻahumanu is Kanaka Maoli bisexual and feminist writer and activist. She is openly bisexual and writes and speaks on sexuality issues frequently. She serves on the editorial board of the Journal of Bisexuality. She is also working on the books My Grassroots Are Showing: Stories, Speeches, and Special Affections and Passing For Other: Primal Creams and Forbidden Dreams – Poetry, Prose, and Performance Pieces. In 1974, she divorced her husband and moved to San Francisco, where she originally came out as a lesbian. She was a student leader in the nascent San Francisco State Women Studies Department, and in 1979, she became the first person in her family to graduate from college. Kaʻahumanu realized she was bisexual and came out again in 1980.
Robert Boyle "Bobbi" Campbell Jr. 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 sarcoma, when that was a proxy for an AIDS diagnosis. He was the first to come out publicly as a person with what came to be known as AIDS, writing a regular column in the San Francisco Sentinel, syndicated nationwide, describing his experiences and posting photos of his KS lesions to help other San Franciscans know what to look for, as well as helping write the first San Francisco safer sex manual.
The Shanti Project is a non-profit human services agency based in San Francisco and founded in 1974 by Dr. Charles Garfield in Berkeley, CA. Its goals are to provide peer support and guidance to people affected by HIV/AIDS, cancer, and other life-threatening conditions. Since its inception, several organizations adhering to the Shanti model have been created in the United States, including projects in Los Angeles, California, Seattle, Washington and Laguna Beach, California.
Callen-Lorde Community Health Center is a primary care center located at 356 West 18th Street in New York City, New York. Callen-Lorde also provides comprehensive mental health services at The Thea Spyer Center, located at 230 West 17th Street. Callen-Lorde is dedicated to providing medical health care to the city's LGBTQ population without regard of ability to pay. It is named in honor of Michael Callen and Audre Lorde.
Joseph Adolph Sonnabend was a South African physician, scientist and HIV/AIDS researcher, notable for pioneering community-based research, the propagation of safe sex to prevent infection, and an early multifactorial model of AIDS.
Sean O'Brien Strub is an American writer, activist, politician and entrepreneur. He is a pioneer expert in mass-marketed fundraising for LGBT equality.
And the Band Played On is a 1993 American television film docudrama directed by Roger Spottiswoode. The teleplay by Arnold Schulman is based on the best-selling 1987 non-fiction book And the Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts, and is noteworthy for featuring both a vast historical scope, as well as an exceptionally sprawling cast.
Richard Berkowitz 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. The award-winning 2008 documentary Sex Positive directed by Daryl Wein is about his life and activities.
HIV/AIDS was first detected in Canada in 1982. In 2018, there were approximately 62,050 people living with HIV/AIDS in Canada. It was estimated that 8,300 people were living with undiagnosed HIV in 2018. Mortality has decreased due to medical advances against HIV/AIDS, especially highly active antiretroviral therapy (HAART).
How to Have Sex in an Epidemic: One Approach is a 1983 manual by Richard Berkowitz and Michael Callen, under the direction of Joseph Sonnabend, to advise men who have sex with men (MSM) about how to avoid contracting the infecting agent which causes AIDS. It was among the first publications to recommend the use of condoms to prevent the transmission of STDs in men having sex with men, and has even been named, along with Play Fair!, as one of the foundational publications in the advent of modern safe sex.
New Pacific Academy (NPA) was an education and training program for young lesbian, gay, bisexual and transgender (LGBT) activists held in San Francisco, California in the summer of 1990. 104 students aged 18 to 30 attended the month-long program.
Michael Anthony Petrelis is an American AIDS activist, LGBTQ rights activist, and blogger. He was diagnosed with Acquired Immunodeficiency Syndrome (AIDS) in 1985 in New York City, New York. As a member of the Lavender Hill Mob, a forerunner to the AIDS Coalition to Unleash Power, he was among the first AIDS activists to protest responses to the disease. He was a co-founding member of ACT UP in New York City, New York, and later helped organize ACT UP chapters in Portland, Oregon, Washington, D.C., and New Hampshire, as well as the ACT UP Presidential Project. Petrelis was also a founding member of Queer Nation/National Capital, the Washington D.C. chapter of the militant LGBTQ rights organization.
New York City was affected by the AIDS epidemic of the 1980s more than any other U.S. city. The AIDS epidemic has been and continues to be highly localized due to a number of complex socio-cultural factors that affect the interaction of the populous communities that inhabit New York.
Social and political activism to raise awareness about HIV/AIDS, as well as to raise funds for effective treatment and care of people with AIDS (PWAs), has taken place in multiple nations across the world since the 1980s. As a disease that began in marginalized populations, efforts to mobilize funding, treatment, and fight discrimination have largely been dependent on the work of grassroots organizers directly confronting public health organizations as well as politicians, drug companies, and other institutions.
The National LGBTQ Wall of Honor is a memorial wall in the Greenwich Village neighborhood of Manhattan in New York City, dedicated to LGBTQ "pioneers, trailblazers, and heroes". Located inside the Stonewall Inn, the wall is part of the Stonewall National Monument, the first U.S. National Monument dedicated to the country's LGBTQ rights and history. The first fifty nominees were announced in June 2019, and the wall was unveiled on June 27, 2019, as a part of Stonewall 50 – WorldPride NYC 2019 events. Five honorees will be added annually.
Ivy Kwan Arce is a first-generation Chinese American HIV survivor, HIV/AIDS activist and artist. She is a surviving member of the People with Aids (PWA) Health Group and was part of grassroots organizations such as the Asian Pacific Islander Coalition on HIV/AIDS (APICHA) and God's Love We Deliver. Today Kwan Arce is a longstanding activist with groups such as ACT UP and TAG.