Computing and the AIDS Crisis
The emergence of HIV/AIDS and the ensuing AIDS Crisis had a seismic impact on the LGBT community and continues to reverberate today. Following the first documented cases in San Francisco in 1981, the rapidly-spreading virus was dubbed by the CDC Gay-Related Autoimmune Disease, or GRID. However, in popular media it was often called the "gay plague," and this conflation of sexual orientation and disease fueled homophobic discrimination and discouraged individuals from seeking needed treatment. Governmental failure to act led to a wave of AIDS activism by groups like ACT UP (AIDS Coalition To Unleash Power) and Queer Nation that aimed to not only challenge public perceptions of PWAs (People With AIDS) but also urge the government to increase funding to AIDS research and increase access to needed treatments.
For PWAs and their caregivers, access to up-to-date information and adequate medical treatment remained one of their biggest challenges throughout the 1980s and 1990s. Public stigma meant these individuals could feel isolated and cut off from a wider community of others going through similar experiences. Computer communication—specifically a then-new technology, the Bulletin Board System (or BBS)—seemed to address both of these needs. A new medical study that could take weeks to circulate was available within hours on a BBS. Multiple different BBSes sprang up in the mid-1980s into the early 1990s, all aimed specifically at serving PWAs and caregivers. Some BBSes, like CAIN and AEGIS, focused on providing access to medical information to both professionals and PWAs. Others, such as Critical Path and AIDS Info BBS, emphasized community organizing, support, and information exchange.
This teaching guide is meant to help introduce students to the relevant issues surrounding the AIDS Crisis, AIDS activism, information circulation, and computing technology.
Key Terms and Concepts
- HIV/AIDS: Human immunodeficiency virus (HIV) infection and acquired immunodeficiency syndrome (AIDS) are a variety of conditions that result from an HIV infection. Most notably, the virus weakens the immune system, increasing individuals' risk of developing opportunistic infections.
- AIDS Crisis/AIDS Epidemic: In the 1980s and early 1990s, HIV and AIDS began spreading rapidly throughout the United States. Though the disease had been present in the 1970s, the first notable cases were identified in San Francisco. At the time, the CDC named this disease Gay-Related Autoimmune Disease, or GRID, and in popular media was often called the "gay plague." This popular belief influenced both public and governmental attitudes toward People with AIDS (PWAs). Public fear of AIDS drove homophobic discrimination, up to an including violence, against gay men. PWAs often had limited access to adequate care or up-to-date medical knowledge about the virus. As a result, groups such as ACT UP and Queer Nation engaged in direct action protests to draw public attention to the Crisis and challenge governmental complacency.
- Bulletin Board System (BBS): BBSes, or Bulletin Board Systems, were some of the first publicly available ways individuals communicated via modem. BBSes had lots of different functions, many of which are mirrored in contemporary social media: users could chat, send and receive email, log into remote databases, and host files. BBS owners were commonly called sysops (for system operator).
Selected Primary Sources
- ACT UP New York Records, The New York Public Library: Digitized copies of archival documents, objects, and ephemera related to ACT UP NY.
- FROM THE ARCHIVE: Early Coverage of AIDS Epidemic on Ch. 5: A collection of clips of local news coverage of AIDS in New York City in 1982, 1985, and 1990.
- Queer Nation Houston Protests Bush-Quayle 1992 Campain Kickoff (October 30, 1991): Local news feature on Queer Nation Houtson protest, including footage of protest tactics.
- 60 Minutes: "ACT UP" (November 15, 1992): 60 Minutes feature on ACT UP.
- INFORMATION AIDS: a non-technical guide to getting information on the world wide web (Critical Path Newsletter #31): A short article from 1995 or 1996 (date unclear) discussing how to use the then-new World Wide Web to find AIDS information.
- AEGIS (AIDS Education General Information System): Free BBS (and later website) that offered a wide-ranging collection of information on AIDS, particularly medical research. Maintained by Sister Mary Elizabeth Clark, who prior to her HIV/AIDS work had a long career as a trans activist and organizer.
- Critical Path AIDS Project: Founded by Kiyoshi Kuromiya in 1989, Critical Path published a newsletter collecting news of ongoing studies and AIDS treatments. Critical Path later opened a free BBS, eventually offering web hosting for AIDS-related websites and mailing lists, a 24-hour AIDS treatment hotline, and computer access for those in the Philadelphia area.”
- Computerized AIDS Information Network: A non-profit database of information on AIDS, funded in part by the state of California.
- AIDS Info BBS: Free BBS (and later website) that offered access to a variety of different information, including copies of mainstream news stories, medical research, statistics, community periodicals, and message boards.
- Collection: AIDS Info BBS Documents: A collection of files recovered from archived versions of the AIDS Info BBS website, as archived by the Internet Archive.
- After reviewing some of the video footage of AIDS activists' protests, what are their major demands? What kinds of information do they need?
- How did the average individual learn about new information and world events in the late 1980s? What were the advantages and limitations of these methods? How did computer communication differ?
- Research more about the background of the sysops of AIDS BBSes. How did their past experiences sharing information inform their BBSes?
Exploring the archive: Break students into small groups and have them download a copy of the Caregivers mailing list archive. Assign each group a folder and have them take ten minutes to read through the messages in order (files are in the order they were received by the email server). Note: Some of these messages deal with personal loss and may be difficult to read.
When that time is up, have them discuss: What kinds of things are folks talking about? How do they talk to each other (tone, style, etc.)? Do you notice any long-term connections emerging? Finally, based on what you know, how is a digital mailing list different from an in-person support group? Once they've finished discussion, have them discuss each question all together.
Suggested Readings and Resources
Early Computer Communication
- Driscoll, Kevin. "Social media's dial-up roots." IEEE Spectrum 53, no. 11 (2016): 54-60.
- Delwiche, Aaron. "Early Social Computing: The Rise and Fall of the BBS Scene (1977-1995)." The SAGE handbook of social media (2018): 35-52.
- History.com. "AIDS Crisis Timeline."
- Fitzsimmons, Tim. "The early days of America's AIDS crisis." NBC News.
- Abbott, Franky. "ACT UP and the AIDS Crisis (Primary Source Set Teaching Guide)," Digital Public Library of America.
- Common Threads: Stories from the Quilt (Rob Epstein and Jeffrey Friedman, 1989)
- Tongues Untied (Marlon Riggs, 1989)
- We Were Here (David Weissman and Bill Weber, 2011)
- How to Survive a Plague (David France, 2012)
- United in Anger: A History of ACT UP (Jim Hubbard, 2012)
- Vice. "HIV: The Neglected Pandemic."
AIDS and Computing
- McKinney, Cait. 2018. "Printing the Network: AIDS Activism and Online Access in the 1980s." Continuum 32, no. 1: 7-17.
- Brewster, Kathryn and Bo Ruberg. 2020. "View of SURVIVORS: Archiving the history of bulletin board systems and the AIDS crisis." First Monday 25, no. 10.
- Lubin, Joan, and Jeanne Vaccaro. 2020. "AIDS infrastructures, queer networks: Architecting the critical path." First Monday 25, no. 10.
- Waters, Michael. "How a 1980s AIDS Support Group Changed The Internet Forever." OneZero.