A Community Forgotten and an Individual Legacy: The Varied Stories of AIDS Activist Groups
Acquired immunodeficiency syndrome in humans is defined by a low CD4 lymphocyte count (HIV.gov). The most common cause of AIDS is the human immunodeficiency virus, most commonly known as HIV. Unlike most other diseases, which have been known since antiquity, HIV/AIDS only came to light in the late twentieth century. Originating in West Africa in the early 1900s, by 1980 it had spread rapidly and become a worldwide epidemic. However, little was known about the disease, and it tended to either cause hysteria or be ignored by the mainstream. Activist groups arose worldwide to give voice to those afflicted by the illness and push for both effective government intervention and an informed public. These groups were formed from various direct causes, but their ultimate goal was the same – the eradication of HIV.
In the United States, AIDS was first identified by the Centers for Disease Control in Atlanta in 1981. However, with the limited information of the time, it was often referred to as “4H Disease,” referencing the four groups widely believed to be at risk – homosexuals, heroin users, hemophiliacs, and Haitians (Koenig et al.). This initial definition contributed further to the ostracism of both AIDS victims and the four groups, as it reinforced existing biases against both. Furthermore, it turned public opinion away from the victims – much of middle America would never interact with any of these groups, and essentially pretended the problem did not exist. A few years later, the CDC realized that AIDS was claiming far too many lives, and requested more funding from the National Institutes of Health to search for a solution. However, in accordance with public opinion, the NIH refused (Boffey). By the year 1986, well over eleven thousand Americans had died of HIV/AIDS (Abbott).
Throughout the 1980s, much of America ignored AIDS if it could. Those that couldn’t, however, responded in a hostile yet understandable manner. The blame for this lies squarely on the federal government, which in 1986 allocated a mere 500 million dollars for research, treatment, and public education with regard to HIV/AIDS, despite the mounting death toll (Summers et al.). The CDC’s failure to communicate the actual causes of AIDS and possible countermeasures led to both an impression that AIDS victims were inherently immoral, as well as a degree of public hysteria. Due to the lack of understanding about the HIV virus’s intransmissibility by air, parents would on more than one occasion march against the admission of infected children to public schools. Similarly, funeral homes in the United States would often refuse to bury those who succumbed to the disease. Alienated, overlooked, and denied even the right to remember their lost friends and family, gay activists would create several effective organizations dedicated to both informing the public and changing public policy. One such group was ACT UP, short for AIDS Coalition to Unleash Power. Founded in 1987 in New York City by longtime LGBT rights activist Larry Kramer, the group staged many effective protests and was able to secure lower prices for AZT, the first AIDS treatment approved by the FDA (Abbott). However, this group was portrayed as combative and anarchist, and as such its effectiveness in the arena of public opinion was limited.
On the other side of the nation, Cleve Jones, another longtime activist, founded a different activist group. In San Francisco before a 1985 protest, Jones asked his fellow activists to write the names of close friends and family who had been lost to the disease on placards which were then taped to the San Francisco Federal Building. Seeing that the placards resembled a patchwork quilt, he prepared for a larger, permanent memorial known as the NAMES Project AIDS Memorial Quilt(The AIDS Memorial Quilt). This permanent memorial would consist of 3 foot by 6 foot panels, intended to represent the size of a human coffin. Eight of these panels would be stitched together to form a block, the units in which they would be stored. Every panel would represent a life lost to AIDS, and be decorated in a manner to represent them. In this way, Jones and his team intended to show the world that victims of AIDS were just as human as everyone else. Thus, he would convince the American public to recognize the plight of those afflicted. In 1987, it was finally displayed on the National Mall, with 1,920 panels. It served as both a reminder of the lives silently lost to the epidemic, as well as an indictment of Washington for not doing more. Blair and Michel argue in their article “The AIDS Memorial Quilt and the Contemporary Culture of Public Commemoration,” published in Michigan State University’s journal Rhetoric and Public Affairs, that the Quilt is a culmination of the “democratization” of American memorial culture. They compare it to the Vietnam Veterans’ Memorial, which similarly lists the names of all those killed and missing due to the American intervention in Vietnam. However, there are stark contrasts between the memorials. The VVM makes no attempt to personify each name inscribed on its walls. The names serve to quantify the staggering costs of war. In contrast, the AIDS Memorial Quilt makes every attempt to portray every name as unique. A name in the former is a statistic, whilst a name in the latter, in conjunction with the surrounding material, qualifies a person. The reason for this difference is the stark divide between public perceptions of veterans and AIDS victims. The public needs only hear the word “veteran” to make a person worth remembering – in opposition, each and every victim of AIDS needed to demonstrate their value as humans in other ways. The Quilt was largely successful in humanizing AIDS victims and creating general awareness of the problem. In a few years’ time, the federal government would finally outlaw discrimination against those with HIV/AIDS.
Of the over forty-eight thousand panels on the AIDS Quilt, one tells the story of an activist group half the world away. It is an unassuming tan panel, with nothing but the name Michel Foucault and the quote “Where there is power, there is resistance… a plurality of resistances… spread over time and space… and it is doubtless the strategic codification of these points of resistance that makes a revolution possible.” A little research reveals that Michel Foucault was a prominent French philosopher and social theorist. He initially refused to recognize the existence of HIV, claiming it an invention of American Puritans, as it was too coincidental that the disease was claimed to affect “blacks, drug users, and gays” – traditional scapegoats of the American conservative establishment (White). This disbelief led him to neglect taking steps to protect himself from AIDS. Ironically, he contracted the disease and eventually died of it in 1984. It was then that his partner, Daniel Defert, founded AIDES, the largest French non-profit organization dedicated to fighting AIDS. To this day, it remains the largest anti-AIDS organization in the Francophone world. Unlike its American counterparts, AIDES was founded due to the influence and mistakes of a single celebrity.
The fight against AIDS has progressed substantially since the 1980s. Today, basic knowledge about the transmission and virulence of HIV is widespread, and those with the disease are no longer social pariahs. Although there remains no cure or vaccine for HIV/AIDS, antiretroviral cocktails are now readily available in the developed world and can lower the viral load of a patient to undetectable levels. Thanks to this, most cases of HIV now never progress to AIDS. AIDS activists can take credit for their role in spreading awareness and making the disease a major issue. No matter how they arose, their ultimate goal – an end to both HIV and AIDS – seems in sight.
Abbott, F., (2016) ACT UP and the AIDS Crisis. Retrieved from the Digital Public Library of America, http://dp.la/primary-source-sets/act-up-and-the-aids-crisis
Blair, C. & Michel, N. (2007). The AIDS Memorial Quilt and the Contemporary Culture of Public Commemoration. Rhetoric & Public Affairs 10(4), 595-626. Michigan State University Press. Retrieved February 13, 2018, from Project MUSE database.
Boffey, P. (1987) Long-Running Debate on AIDS: How Well Did Americans Respond? https://www.nytimes.com/1987/10/13/science/long-running-debate-on-aids-how-well-did-americans-respond.html/
Koenig, S., Ivers, L., Pace, S., Destine, R., Leandre, F., Grandpierre, R., … Pape, J. (2010). Successes and challenges of HIV treatment programs in Haiti: aftermath of the earthquake. HIV Therapy, 4(2), 145–160. http://doi.org/10.2217/hiv.10.6
Summers, T., Kates, J. (2004) Trends in U.S. Government Funding for HIV/AIDS. https://kaiserfamilyfoundation.files.wordpress.com/2013/01/issue-brief-trends-in-u-s-government-funding-for-hiv-aids-fiscal-years-1981-to-2004.pdf
The AIDS Memorial Quilt. Retrieved from http://www.aidsquilt.org/about/the-aids-memorial-quilt/
What are HIV and AIDS? Retrieved from https://www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/what-are-hiv-and-aids/
White, Edmund. (2014) Edmund White recalls a night at the opera with Michel Foucault in 1981. The Telegraph. https://www.telegraph.co.uk/culture/books/authorinterviews/10663337/Edmund-White-recalls-a-night-at-the-opera-with-Michel-Foucault-in-1981.html