image from the University of Minnesota AIDS Poster Collection
Selector: Alexandra Sarkozy
As the AIDS pandemic enters its 40th year, and the COVID-19 pandemic finishes its second, it can be useful to look historically at the trajectory of one pandemic for lessons for the second. What we find is that epidemics are not defined by viruses alone, but rather vary locally due to historically-created social and political conditions, and in many regions, post-colonial legacies. This guide presents ebooks, websites, primary source collections, and articles from the WSU Libraries collections and the open web about the history of HIV and AIDS. While it's tempting to think that in the age of HAART HIV and AIDS are no longer major killers, but the fact is we have not yet emerged from the AIDS pandemic. Detroit as a city has four times the infection rate of HIV than the state average. Understanding AIDS from a historical perspective provides insights into the disease process that elude biomedical research methods alone.
AIDS was first documented in the United States in June 1981. The AIDS epidemic in the early 1980s confronted several decades of loosening sexual conservatism in the United States with the limitations of a sexually transmitted, life-threatening disease for which there was no prevention or cure. Because news coverage initially disproportionately represented AIDS sufferers as almost exclusively from historically marginalized populations, including gay men, Black men, and intravenous drug users, the history of AIDS is one with grassroots activism, racial discrimination, and contested sexualities at its core. In the wake of political and social fear, stigmatization of AIDS sufferers, and indifference to the increasing death counts, AIDS activists forced political and scientific establishments to take notice and to fund AIDS prevention and research. AIDS activism also broke boundaries and pushed forward the conversation about gay recognition and gay rights in America. As the AIDS pandemic spread around the globe, especially to the African subcontinent and later Russia, the AIDS epidemic was shaped by memories of previous epidemics and their handling by colonial regimes.
With new treatments like AZT and HAART, AIDS has transitioned from an epidemic infectious disease to a chronic disease managed by pharmaceutical interventions. While social attitudes about HIV and AIDS have changed in the last 40 years, it is instructive to look at historical interpretations of the origins, spread, social contexts, and historical contingencies that informed individual, cultural, and policy responses to the spread of the virus. Studying the history of the AIDS pandemic can help us better understand the dynamics of the COVID pandemic, and to hopefully limit the devastation and loss of life exacerbated by our social and political responses to both.
United in Anger: a History of ACT UP (Kanopy Streaming Video)
"An inspiring documentary about the birth and life of the AIDS activist movement from the perspective of the people in the trenches fighting the epidemic. Utilizing oral histories of members of ACT UP, as well as rare archival footage, the film depicts the efforts of ACT UP as it battles corporate greed, social indifference, and government neglect. The film takes the viewer through the planning and execution of a half dozen exhilarating major actions including Seize Control of the FDA, Stop the Church, and Day of Desperation, with a timeline of many of the other actions that forced the U.S. government and mainstream media to deal with the AIDS crisis. UNITED IN ANGER reveals the group's complex culture - meetings, affinity groups, and approaches to civil disobedience mingle with profound grief, sexiness, and the incredible energy of ACT UP."
How to Survive a Plague (DVD, request from storage)
"In dramatic fashion, we witness the founding of ACT UP and TAG (Treatment Action Group), and the rise of an underground drug market in opposition to the prohibitively expensive (and sometimes toxic) AZT. We watch as these activists learn to become their own researchers, lobbyists, drug smugglers, and clinicians, establishing their own newspapers, research journals, and laboratories, and as they go on to force reform in the nation’s disease-fighting agencies. With his unparalleled access to this community David France illuminates the lives of extraordinary characters, including the closeted Wall Street trader-turned-activist, the high school dropout who found purpose battling pharmaceutical giants in New York, the South African physician who helped establish the first officially recognized buyers’ club at the height of the epidemic, and the public relations executive fighting to save his own life for the sake of his young daughter."
The Age of AIDS (PBS Frontline Streaming Media, 2006)
"FRONTLINE examines one of the worst pandemics the world has ever known in "The Age of AIDS." After a quarter century of political denial and social stigma, of stunning scientific breakthroughs, bitter policy battles and inadequate prevention campaigns, HIV/AIDS continues to spread rapidly throughout much of the world, particularly in developing nations. In Part One's two-hour broadcast, "The Age of AIDS" begins with the medical and scientific mystery that emerged in 1981 when five gay men in Los Angeles were diagnosed with a new disease. The film documents the frantic search by American and European scientists and epidemiologists to find the source of the deadly infection as they tracked its spread among gay men, intravenous drug users, and hemophiliacs, and then into the general population. The trail led them back in time, from major American and European cities to Haiti and finally to the Congo. The story then moves from the mysterious virus to the fear, stigma and political controversies during the Reagan administration. Attempts to prevent the spread of the disease, most prevalent among gay men and intravenous drug users at the time, sparked furious public debate. As the film tracks HIV's devastating spread around the world, it documents how some countries-in Europe, Africa and Asia-found tools to slow its progress, including needle-exchange programs and massive condom distribution campaigns. Part Two of "The Age of AIDS" begins by exploring the chasm that emerged between rich and poor following the development of the miraculous "triple cocktail" HIV treatment. In the mid-1990s, when doctors discovered the cocktail, it seemed to signal a new era in which AIDS was no longer a fatal disease. But the high price of the drugs meant they were unaffordable to patients in developing nations. "The Age of AIDS" tracks the political struggle to lower those prices, in countries like Brazil, and documents the South African government's tragic failure to battle the epidemic that was overwhelming its country. The film also examines the next wave of the AIDS epidemic in some of the most populous and strategically important nations in the world, including Russia, India and China, and tracks the same pattern of official denial and political indifference that characterized the epidemic in so many other countries."
CBS News special from 1986 that highlights how AIDS was framed in United States media coverage. The rampant homophobia and anti-sex attitudes, prejudice against drug users, and stigma associated with the disease are only questioned, and the disease taken seriously, when the disease begins to spread among heterosexuals.
1982 - 1992 News Clips On HIV/AIDS (YouTube)
These news clips also give a powerful sense of how AIDS was framed and discussed during the first ten years of the epidemic. Fear, stigma, homophobia, and anti-drug sentiment surround the AIDS narrative of the time, and contributed to the stigmatizing of AIDS victims and the resistance to public funding of the prevention and treatment of AIDS.
Those People: AIDS in the Public Mind (KQED Current Affairs Department, 1987) (National Library of Medicine YouTube)
"Documents the lives of a number of San Franciscans living with AIDS/ARC who have tried to face society's terror and paranoia. Shows the efforts of friends and families of AIDS victims who steadfastly support their loved ones, the efforts of the Shanti Project to provide physical and psychological services to AIDS/ARC victims, and the personal efforts of Bobby Reynolds who has confronted society's fears through his writings and speeches. Learn more about the National Library of Medicine's historical audiovisuals program at: https://www.nlm.nih.gov/hmd/collections/films.html"
Self-portrait of David Wojnarowicz, from the Whitney Museum of Art
An upcoming open access digital collection from Reveal Media that documents the response of the artistic community to the ongoing AIDS epidemic. "HIV, AIDS & the Arts will aim to preserve approximately 75,000 pages and items of primary sources in all art forms whenever possible: Sheet music, manuscripts, playbills and production notes, and all manner of visual art, as well as the personal papers of lesser known artists of all types. By no means comprehensive, the collection acknowledges the impossibility of representing all forms or artists, as the artistic production in response to the epidemic is ongoing. By focusing on breadth rather than depth, Reveal Digital seeks to offer pathways for viewers to discover voices and seek further unknowns. The absences in this collection will be as important as what is included. In its incomplete nature, the collection invites question and critique of what is included, towards recognizing the work of artists that remains to be discovered."
National Library of Medicine History of Medicine exhibit on the HIV/AIDS epidemic. Images, sound recordings, and media from the past 40 years highlight the major inflection points of the AIDS epidemic in America in this online website. The site also includes educational materials for high school students as well as higher education, links to current HIV resources from the National Library of Medicine, and a digital gallery for more information.
"“I’m Still Surviving” is an oral and public history and design project that documents, interprets, and presents women’s experiences in the history of HIV/AIDS in the United States. Led by historian Jennifer Brier at the University of Illinois at Chicago and designer Matthew Wizinsky at the University of Cincinnati as a part of the History Moves initiative, the “I’m Still Surviving” project is an innovative partnership with women living with HIV/AIDS in Brooklyn, NY, Chicago, IL and Raleigh-Durham, NC. Almost all of these women have been a part of the Women’s Interagency HIV Study (WIHS)—a longitudinal medical research project established in 1993. With “I’m Still Surviving,” the women become the researchers. Together with their university-based partners, they collect and analyze oral history interviews to produce books and travelling exhibitions on their experiences as women living with HIV. Through this collaborative work, “I’m Still Surviving” is broadening historical understanding of HIV/AIDS and breaking new ground in oral and public history practice." (more here)
"ACT UP, founded in March of 1987, is a diverse, non-partisan group of individuals, united in anger and committed to direct action to end the AIDS crisis. Its determined advocacy and highly-focused demonstrations supported by innovative graphics utterly changed the world’s perception of people with AIDS and queer people. It radically altered the medical research and drug approval processes in the United States, and the doctor/patient relationship, while its 4-year campaign to change the CDC definition of AIDS to include opportunistic infections affecting women and injection drug users saved millions of lives across the world. The Latina/o Caucus fostered not only AIDS Activism, but also jump started LGBT activism in Puerto Rico. For that reason and many others, we’re delighted that we could include the Latina/o Caucus Archive, a mixed media archive developed by Julián de Mayo and sourced largely from the personal collections of surviving members of the LC."
Toni Swanger was a Detroit journalist who wrote and produced for WDET and Metro Times. She was a staunch advocate of women's rights. Several articles in her digitized personal papers show her interest in HIV/AIDS and its impact on women during the 1980s and 90s.
LGBT Detroit started as Kick Publishing Company in 1994. Based in Detroit, Kick was the third Black American LGBT media company created in the United States. Distributed nationally, Kick Magazine provided the LGBT community with information, awareness, and a way to organize. In 2003, Kick Publishing Company was revitalized into the non-profit organization: KICK- The Agency for LGBT African Americans. KICK focused on health, education, employment, and social justice for the African American LGBT community in the Detroit area.
The collection consists of studies and reports prepared by United Community Services of Metro Detroit staff and committees on a variety of issues and programs conducted under UCS auspices as well as those prepared by outside experts and organizations working in the field of social welfare. Important subjects in the collection: Aged problems AIDS and HIV Child neglect and protective services for children Crime and delinquency Demographic data Ethnic/racial communities in metropolitan Detroit Family services Health care for the medically indigent Local, state, and federal welfare programs Poverty and low income Recreation Settlements and community centers Social welfare planning and agency administration Social workers Substance abuse Teen pregnancy Unemployment
Numerous other collections in Reuther also contain material related to HIV/AIDS, including the documents of several national labor unions and other groups to the AIDS crisis during the 1980s and 1990s. Contact the Reuther to find out how to access these materials.
Notable AIDS activist Dr. Lawrence Crane is a WSU Medical School professor, practitioner, and leader. From his WSU alumni page:
"In the early 1980s, Dr. Crane changed the lives of thousands living with HIV when he decided to provide medical care to those with Gay-Related Immune Deficiency, later renamed AIDS. His leadership later made the Wayne State University School of Medicine’s Adult HIV program Michigan’s largest provider of medical care for those living with HIV. Dr. Crane led the development of clinical care, student and trainee education, and clinical research for men and women with HIV. His coordination with other departments contributed to making the school the leader in Michigan for care and research of children, adolescents and pregnant women with HIV."
The Bentley Historical Library houses many collections with material related to the history of HIV/AIDS in Michigan, including the James W. Toy Papers and the AIDS Partnership Michigan Records: 1983-2005.
Madievsky, Anna. "AIDS in History is a Remedy." Harper's Bazaar, Dec 2021. FULLTEXT@WAYNE
Rosenberg, Charles E. "What Is an Epidemic? AIDS in Historical Perspective." Bulletin of the History of Medicine, vol. 94 no. 4, 2020, p. 563-577. Project MUSE, doi:10.1353/bhm.2020.0082. FULLTEXT@WAYNE
Parry, Manon S. "Public Health Heritage and Policy: HIV and AIDS in Museums and Archives." História, Ciências, Saúde--Manguinhos, vol. 27, no. suppl 1, 2020, pp. 253-262. FULLTEXT@WAYNE
“Interchange: HIV/AIDS and U.S. History.” Journal of American History, vol. 104, no. 2, Sept. 2017, pp. 431–460. EBSCOhost, doi:10.1093/jahist/jax176. FULLTEXT@WAYNE
Padamsee, Tasleem J. "Fighting an epidemic in political context: thirty-five years of HIV/AIDS policy making in the United States." Social History of Medicine 33.3 (2020): 1001-1028. FULLTEXT@WAYNE
Vider, Stephen. "Public Disclosures of Private Realities: HIV/AIDS and the Domestic Archive." The Public Historian, vol. 41, no. 2, 2019, pp. 163-189. FULLTEXT@WAYNE
Brier, Jennifer. ""I'm Still Surviving": Oral Histories of Women Living with HIV/AIDS in Chicago." The Oral History Review, vol. 45, no. 1, 2018, pp. 68-83. FULLTEXT@WAYNE
Doyle, Shane. "Chronology and Causality in Africa’s HIV Pandemic: The Production of History between the Laboratory and the Archive." Past & Present, vol. 252, no. 1, 2021, pp. 249-290. FULLTEXT@WAYNE
Luker, Vicki. "The Lessons of Leprosy? Reflections on Hansen's Disease in the Response to HIV and AIDS in the Pacific." The Journal of Pacific History, vol. 52, no. 3, 2017, pp. 385-406. FULLTEXT@WAYNE
Doyle, Shane. "Pandemics and Soft Power: HIV/AIDS and Uganda on the Global Stage." Journal of Global History, vol. 15, no. 3, 2020, pp. 478-492. FULLTEXT@WAYNE
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