Forgetting ACT UP: ’Too often the past is reduced to one person, one moment.’
Last month, Ted Kerr hosted an event called PDF Club: Forgetting ACT UP, by Alexandra Juhasz, at the Bureau of General Services Queer Division. It was an opportunity for people who care about AIDS and activism to come together to discuss Juhasz’s essay exploring the idea that, “when ACT UP is remembered--again and again and again--other places, people, and forms of AIDS activism are disremembered.” Below, Ted reflects on his program and contributes his “Our Herstory of the Ongoing AIDS Crisis(es).”
The event came out of my frustration that often when HIV/AIDS is discussed we fail to talk about the complexity and diversity of the past and ongoing responses to HIV, and how this is related to the larger problem of the limited ways histories are shared. Too often the past is reduced to one person, one moment. As Juhasz is asking in the essay: What is lost when we do that? And as I tried to explore at the event: What are the present-day ramifications when stories go untold or are overly simplified? What does it mean when we remember only a narrow version of ACT UP but fail to discuss Partners in Health, Robert R., Diseased Pariah News or Joy Morris?
In anticipation of the event I created an AIDS timeline (of sorts) that includes the above mentioned and more. Calling it “Our Herstory of the Ongoing AIDS Crisis(es),” I am naming A People’s History of the United States by Howard Zinn as an influence. The book shares the story of the United States from the point of view of those whose “plight has been largely omitted from most histories.” I use “herstory” to illustrate the timeline’s aim to not reproduce patriarchal ideas of the past. (After talking with a friend I realized I should have used hirstory instead.) I use “ongoing” and pluralize “crisis” to confirm what you already know: HIV/AIDS is not over, and there are many different experiences of the crisis. On the paper copy of the timeline that I distributed at the event, the following passage was included: “For PDF Club: Forgetting ACT UP (2015) I complied a list in chronological order of things within the ongoing AIDS movements of the world. This is not a comprehensive list. It leaves out infinitely more than it includes. It is bias.”
We started and ended Forgetting ACT UP by reading from the “Our Herstory” timeline. It was powerful and beautiful to hear people stumbling over names they had never read out loud before, and to feel the joy emitted when someone’s personal history become communal.
After the event I loaded the timeline up on my twitter deck to release a moment a day, using, “#ourherstory” in every post. My hope is people will share these moments online, and--most importantly--add their own so that together we may create “A People’s AIDS Timeline.”
Below are the initial moments I created for Forgetting ACT UP. To share on twitter or to create and share your own, feel free to use #ourherstory.
Researchers estimate that some time in the early 1900s a form of simian immunodeficiency virus, SIV, was transmitted to humans in central Africa. The mutated virus was later identified as the first of other human immunodeficiency viruses, HIV-1.
1959 The first known case of HIV in a human occurs in a man who died in the Congo, later (from his preserved blood samples) confirmed as having HIV infection.
1969 Robert R., an African-American teenager, dies, cause of death uncertain. A Western Blot test done in 1987 on his tissues confirm that he died of AIDS-related complications.
1981 The CDC reports a cluster of pneumonia cases in five gay men in Los Angeles.
1981 An article in The New York Times carries the headline: “Rare Cancer Seen in 41 Homosexuals”. The article describes cases of Kaposi’s sarcoma found in 41 gay men in New York City and San Francisco.
1982 A fatal wasting disease, known locally as “slim,” is becoming increasingly common in Southwest Uganda.
1982 The Sisters of Perpetual Indulgence release PLAY FAIR, one of the first safer sex pamphlets in response to the growing crisis.
1982 Richard Berkowitz and Michael Callen with Dr. Joseph Sonnabend write “How to Have Sex in an Epidemic: One Approach,” which advises gay men about how to avoid contracting the infecting agent which causes AIDS, now known to be HIV.
1982 Gay Men’s Health Crisis forms in Larry Kramer’s NYC apartment.
1983 Dr. Mathilde Krim and others launch with the New York-based AIDS Medical Foundation which will later merge with an LA organization to form amfAR, the American Foundation for AIDS Research.
1983 The Denver Principles are drafted by people living with HIV, which begins with “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.’”
1984 First small-scale needle and syringe exchange project starts in Amsterdam.
1984 The first AIDS research project in Africa, Project SIDA, is launched in Kinshasa, Democratic Republic of Congo.
1985 China reports its first HIV/AIDS case; this means that at least 1 HIV/AIDS case has been reported from each region of the world.
1985 Paul Farmer and Ophelia Dahl help set up a community-based health project in Haiti known as Zanmi Lasante, which later becomes part of Partners in Health.
1985 The AIDS Quilt is conceived by activist Cleve Jones.
1985 117 parents and 50 teachers sign a petition calling for 14 year old Ryan White to be banned from Western Middle School because of their ignorance around White’s HIV-positive status.
1986 Gay Men of African Descent (GMAD) was conceptualized in New York City, a result of the vision of founder Reverend Charles Angel who, together with a few of his closest friends, embarked on a mission to empower black gay men.
1986 Silence = Death posters created by a small group of artists appear in NYC.
1986 Other Countries, Black Gay Expression hosts first writers workshop on June 14.
1987 The first antiretroviral drug (AZT) is licensed to treat people with HIV, but is unavailable to virtually everyone outside of the United States and select “developed nations.”
1987 The U.S. government bans HIV-positive travelers from entering the country, citing both public health concerns and the potential financial burden on US health service. Among President Obama’s first actions was revoking the ban.
1987 GMHC hired Jean Carlomusto to staff its audio-visual department and the Living with AIDS show began regular cable access broadcasts (although a few shows can be dated as early as December 1984). Also in 1987, Testing the Limits began to document the burgeoning AIDS movement.
1987 After Nora Ephron cancels a talk at the LGBT Center, Larry Kramer fills in, delivering a powerful speech asking, according to Douglas Crimp, “Do we want to start a new organization devoted to political action?” The answer was “a resounding yes.” Approximately 300 people met two days later to form ACT UP.
1988 The World Health Organization establishes World AIDS Day on December 1, believing it would maximize coverage of World AIDS Day by western news media, sufficiently long following the U.S. elections but before the Christmas holidays.
1988 Lou Sullivan participates in a series of interviews in which he talks about his experiences as a gay trans man living with HIV.
1988 The art collective Little Elvis distributes a yellow and black sticker that reads “The AIDS Crisis Is Not Over.”
1989 Kiyoshi Kuromiya launches Critical Path, a newsletter that contained some of the earliest and most comprehensive sources of HIV treatment info that was mailed to people all over the world including incarcerated individuals to “insure their access to up-to-date treatment information.”
1989 STOP THE CHURCH, organized by ACT UP and Women’s Health Action and Mobilization, mobilizes 4,500 protestors to gather outside a mass at St. Patrick’s cathedral while a few dozen activists enter the cathedral to interrupt mass, chant slogans, and lay down in the aisles to protest the Roman Catholic Archdiocese’s public stand against safe sex education in New York City public schools, condom distribution, the cardinal’s public views on homosexuality, as well as Catholic opposition to abortion.
1990 Diseased Pariah News, a humorous magazine about HIV/AIDS, is launched in San Francisco, published by Beowulf Thorne and edited by Tom Shearer. All the issues were gathered and digitized in one website by Tom Leger and Julie Blair.
1990 The WAVE project (Women’s AIDS Video Enterprise) is formed, a group of diverse women using video production for self-empowerment while living with AIDS.
1991 The Visual AIDS Artist Caucus creates the Red Ribbon to show support and compassion for those with AIDS and their caregivers.
1991 The first International Indigenous AIDS Conference is hosted in Auckland, New Zealand by Te Roopu Tautoko Trust.
1992 The International Community of Women Living With HIV is unveiled at the International AIDS Conference after years of women from around the world feeling ignored within the AIDS movement.
1992 Durbar, a sex worker collective of male, female and transgender sex workers, forms a a vertical HIV intervention program. The program defines HIV as an occupational health problem.
1992-1993 At the urging of activists, the CDC changes the definition of “AIDS” to be more inclusive, specifically around the inclusion of women. A famous slogan at the time from Gran Fury goes, “Women Don’t Get AIDS, They Just Die From It.”
1993 James Wentzy begins AIDS Community Television. Over the course of three years he produces over 150 programs. His work is available to view at the NYPL.
1994 POZ Magazine, a lifestyle magazine for people living with HIV, is formed. The title comes from a conversation founder Sean Strub had with a friend who asked if a new mutual friend “was a pozzie.”
1996 In Vancouver, the 11th International AIDS Conference highlights the effectiveness of highly active antiretroviral therapy (HAART).
1996 With federal law 9313 the Brazilian government provides free, universal provision of antiretroviral drugs (ARVs), including protease inhibitors to all citizens living with HIV/AIDS. In part this is possible because Brazil has begun producing generic versions of AIDS meds, against challenges from the United States.
1996 AID for AIDS is founded by Jesús Aguais, an AIDS activist from Venezuela, working at the HIV Clinic of St. Vincent’s Hospital. Among many projects is the HIV Medicine Recycling Program, which recovers unused, unexpired life-saving medication that otherwise will be wasted and redistributes it to those without access in developing countries through the AIDS Treatment Access Program.
1997 Fela, pioneer of Afrobeat music, dies of complications related to AIDS. Over 1 million people attend his funeral in his home country of Nigeria.
1997 Sex Panic is formed in NYC as a a “pro-queer, pro-feminist, anti-racist direct action group” campaigning for sexual freedom in the age of AIDS. That same year Eric Rofes gives a keynote address at the Creating Change conference in San Diego, addressing what he views as an emerging “sex panic” targeting gay men, with the scapegoating increasingly coming from within the LGBT community.
1998 Noble Peace Prize nominee, activist Zackie Achmat, living with HIV in South Africa, refuses to take antiretroviral drugs until all who needed them have access, even after Nelson Mandela urges him to resume his treatment. He holds firm until August 2003, shortly before the South African government announces that it will make antiretrovirals available in the public sector.
1998 After the beating death of Gugu Dlamini, a volunteer field worker for the National Association of People Living With HIV/AIDS in South Africa, activists across the HIV spectrum started wearing “HIV Positive” T-shirts in an attempt to reduce violence and stigma, a strategy inspired by the apocryphal story of the Danish king wearing the yellow star marking Jews under Nazi occupation.
2001 The United Nations Commission on Human Rights affirms access to AIDS drugs as a human right unanimously, with the exception of the abstention of the United States.
2001 Artist Chloe Dzubilo founds the Equi-Aid Project, a Manhattan-based riding program that specifically works with children who are infected with or affected by HIV/AIDS as well as other at-risk youth. Chloe had been involved with the political action group the Transsexual Menace and will go on to direct one of the first federally funded HIV prevention programs for transgender sex workers in 1997.
2002 Joy Morris founds TransActions, an organization that lobbies and advocates for HIV services for transgender people at both the local and national levels.
2003 Insite, a supervised injection site, opens in Vancouver, Canada, as a place where people can inject drugs and connect to health care services.
2007 The South African government begins to scale up its ARV program after years of previous President Mbeki’s state-sponsored AIDS denialism.
2008 Swiss experts say individuals with undetectable viral load and no STIs cannot transmit HIV during sex.
2008 Sex Positive, a film by Daryl Wein that explores the life of Richard Berkowitz, a revolutionary gay S&M sex worker turned AIDS activist in the 1980s, is released.
2010 VOCAL NY is formed out of what had been the New York City Housing Network, which was founded in the mid-’90s by Jennifer Flynn, Joe Bostic and Jose Capestany, and focused on community organizing and political education to build power among marginalized New Yorkers.
2011 Cambodia, China, Myanmar, Thailand, Viet Nam and Laos sign “A Memorandum of Understanding for Joint Action to Reduce HIV Vulnerability related to population movement in the greater Mekong Subregion” with the overall objective to “reduce HIV vulnerability and promote access to prevention, treatment , care and support among migrants and mobile population and affected communities.”
2011 The “I Party. I Bareback. I’m Positive. I’m Responsible.” poster is created by Mikiki (with Scott Donald) for AIDS Action Now’s posterVIRUS campaign.
2012 On September 25, a former prisoner, community partners and the Canadian HIV/AIDS Legal Network launch a lawsuit against the Government of Canada over its failure to protect prisoners’ right to health and prevent the spread of HIV and hepatitis C virus in Canadian federal prisons, popularizing the slogan “prison health is community health.”
2012 Films How to Survive a Plague (dir. David France) and United in Anger (dir. Jim Hubbard) are released.
2012 Australia’s The Institute of Many (TIM) is a peer-run group for HIV positive people is co-founded by Nic Holas and Jeff Lange, who feel “that we are part of the third wave of HIV positive people.”
2012 QUEEROCRACY works in coalition with ACT UP New York, ACT UP Philadelphia, Health GAP, Housing Works and VOCAL-NY to take over Speaker of the House John Boehner’s office. Protestors strip naked to represent “the naked truth” of what looming sequestration cuts would mean for people living with HIV/AIDS.
2013 The Center for Comprehensive Care change their name to the Spencer Cox Center for Health, honoring the life of activist Spencer Cox who in 2012 at age 44 died of AIDS-related causes.
2013 Jessica Whitbread begins Love Positive Women, an initiative that runs February 1 to 14 and encourages people to express, share, and and support themselves as a positive woman, or as a friend of the community.
2013 GrenAIDS is formed in NYC, initiated by artist Kia Lebajia and others with the goal of giving you a “healthy dose of artist collective, with a sizable portion of HIV/AIDS consciousness and education, adding a handful of calling you out on those tired AIDSphobic remarks. We’re going the fuck off. BOOM. GrenAIDS.”
2013 partybottom.tumblr.com is launched, “the *sexy* HIV+ transgender blog.”
2014 Presente! The Story of Latino AIDS Activism in NYC is hosted by the NYPL.
2014 The first ever national HIV Is Not a Crime conference is held in Grinnell, Iowa, organized by a coalition of HIV, LGBT and social justice groups.
2016 The 21st annual International AIDS Conference will be held in Durban, South Africa.