AIDS Activism

Activists Saved Millions of Lives

The horror and scope of the AIDS holocaust of the 1980s and ’90s is impossible to adequately convey today in 2019 when AIDS has all but disappeared from public discourse. Yet, the bigotry and marginalization that accompanied the epidemic, stymying our nation’s response to it, have not faded with time but are now front and center.The pervasive response to the AIDS health crisis was apathy, recrimination and even threats to quarantine people with HIV. “They got what they deserved” was a common sentiment. More shocking still, stories abound of health care providers refusing care and treatment to the desperately ill. With the deaths of celebrities Rock Hudson, Freddie Mercury, Liberace, and Arthur Ashe along with basketball legend Magic Johnson’s admission that he was infected with HIV, the nation began to awaken to the reality of AIDS. No longer were the staggering numbers simply unknown “perverts” but people widely known and admired. However, what truly turned the tide of apathy and inaction was activism in the gay community and among its supporters. Activists forced the government and regulators to listen and act. They worked hand-in-hand with scientists and drug companies to streamline drug testing and approval ushering in breakthrough drugs in record time. Today with treatment people live relatively normal lives with HIV. Activists quite simply saved millions of lives.

A great place to start: “The Fight Against AIDS” a CNN Film

From the CNN series “The Eighties”, “The Fight Against AIDS” episode #3 looks at the epidemic’s first decade through the lens of television and news coverage. The film is an excellent introduction to the many issues raised in the struggle to come to grips with the AIDS crisis, highly recommended as a place to get started with students. Available on Netflix. View the video on DailyMotion

Back To Basics: AIDS/HIV Advocacy as a Model for Catalysing Change (pdf)

Excellent overview of the outcomes of the activist movement. “People affected by HIV ultimately rallied together and created an advocacy movement that demanded change and got results. As a result of the efforts of the HIV/AIDS activists in the United States, HIV/AIDS has gone from being a death sentence to a chronic, manageable illness as long as access to medicines following diagnosis is assured. This movement fundamentally changed the medical research paradigm. It changed how research is conducted, how drugs are approved, and how patients engage with all areas of the federal government, and even with the private sector.”

ACT UP: AIDS Coalition to Unleash Power

An international direct action advocacy group working to impact the lives of people with AIDS (PWAs) and the AIDS pandemic to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. Wikipedia article (good overview)

From the ACT UP NY website

Below are links to information on the original ACT UP website. Please be advised it is a bit funky and outdated in its appearance but it houses the raw materials documenting the workings of the movement. Also, note that ACT UP was founded in 1987, the World Wide Web didn’t come into being until 1991 so much of this material originally existed only in print and was adapted to the web later.

Index of ACT UP Documents Civil Disobedience Handbook Demonstrator/Protestor Manual Why We Get Arrested – Personal statements from protestors Marshall Training – marshals were observers and acted as a buffer between police, hecklers, and bystanders.

Planning an Action ACT UP Oral History Project -Video interviews and transcriptions of key ACT UP members ACT UP History ACT UP Chants Phrases used by protestors New member packet

“How To Survive A Plague” Film

“HOW TO SURVIVE A PLAGUE is the story of two coalitions—ACT UP and TAG (Treatment Action Group)—whose activism and innovation turned AIDS from a death sentence into a manageable condition. Despite having no scientific training, these self-made activists infiltrated the pharmaceutical industry and helped identify promising new drugs, moving them from experimental trials to patients in record time. With unfettered access to a treasure trove of never-before-seen archival footage from the 1980s and ’90s, filmmaker David France puts the viewer smack in the middle of the controversial actions, the heated meetings, the heartbreaking failures, and the exultant breakthroughs of heroes in the making.” The film was nominated for an Academy Award in 2012. In 2016 David France published a highly acclaimed companion book of the same name. The book goes into much greater detail on the life and death struggles of the early years of the epidemic at its epicenters… “not since the publication of Randy Shilts’s classic And the Band Played On has a book measured the AIDS plague in such brutally human, intimate, and soaring terms”. “How To Survive A Plague” website

The David Serko Project

David Serko was a professional entertainer and member of ACT UP who died from the complications of AIDS in 1992. The Project is an effort by his brother Peter to discover more about David’s life and in particular his AIDS activism. The Project evolved into a play “My Brother Kissed Mark Zuckerberg” and film “Footnote“. Find out more @ davidserko.com

Teaching Resources

Avert.org Timeline of HIV

A wonderful visual resource that is sortable by categories such as Activism, Policy and Culture, Milestones, etc

Surviving and Thriving: AIDS, Politics, and Culture

An online exhibition that includes comprehensive course materials and lesson plans for Grades 10-12 and Higher Education from NIH: National Library of Medicine.

Grades 10-12

AIDS Activism Now and Then

Higher Education Modules

PATIENT ZERO and the Early North American HIV/AIDS Epidemic RESPONDING TO AIDS: History, Politics and Visual Culture SOCIETY AT ODDS: the Evolution of AIDS Outreach and Education in America

Video

AIDS History and Activism Youtube Playlist a collection of videos related to ACT UP and the fight against AIDS

“Fight Back, Fight AIDS: 15 Years of ACT UP”

Film overview of ACT UP by activist and ACT UP member James Wentzy. James, among others, documented the intimate details of the movement. The film shows meetings, many of the group’s protests and other actions. Other films by James

Stephen Floyd and Phil Dunn Archive

An eclectic collection of activist memorabilia from the 1980s and ’90s.

Gran Fury Digital Collection @ NY Public Library

Gran Fury was an AIDS activist artist collective from New York City consisting of 11 members including: Richard Elovich, Avram Finkelstein, Amy Heard, Tom Kalin, John Lindell, Loring McAlpin, Marlene McCarty, Donald Moffett, Michael Nesline, Mark Simpson and Robert Vazquez-Pacheco. Gran Fury organized as an autonomous collective, describing themselves as a “…band of individuals united in anger and dedicated to exploiting the power of art to end the AIDS crisis.”

ACT UP Digital Collection @ NY Public Library

Collection of posters and photographs from the movement.

AIDS Poster Collection @ University of Minnesota

“The posters presented here represent a global sampling of materials and posters produced concerning the HIV/AIDS crisis. Many of the posters were created as part of different prevention/awareness programs and distributed between the mid-1980s and the mid-1990s. Although most materials relate in some way to the LGBT community – there are posters addressing issues of HIV/AIDS for a number of different communities and from different perspectives. Among the most common issues addressed are: safer sex practices, condom use, information distribution, respect (of oneself and one’s partner) and risks associated with drug use.”

International collection of educational materials. Warning some are very explicit.

National Institutes for Health Digital Collection of AIDS education/prevention materials.

Posters, brochures, manuals, and more.

The Ryan White Letters

Letters sent to Ryan White by children. Ryan White was diagnosed with AIDS following a blood transfusion in December 1984 at age 13 while living in Kokomo, Indiana and was given six months to live. When Ryan White tried to return to school, he fought AIDS-related discrimination in his Indiana community. Along with his mother Jeanne White Ginder, Ryan White rallied for his right to attend school – gaining national attention – and became the face of public education about AIDS. Ryan White lived five years longer than predicted. He died in April 1990, one month before his high school graduation and only months before Congress passed the legislation bearing his name in August 1990 – the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Key Documents:

The Denver PrinciplesJim EigoVito Russo: Why We FightWhy We Get ArrestedReagan and AIDS