On October 2nd 1985, American actor and icon Rock Hudson died of AIDS-related causes at age 59. His death was a huge deal for Americans; imagine if all the celebrity deaths of 2016 were combined and you can picture the reactions of society. In the months that followed the public confirmation of his illness in July, private donations supporting AIDS research and people with AIDS rose almost 200%, and his death continued this exponential rise in public support. Hudson himself posthumously donated $250,000 to found the American Foundation for AIDS Research (amFAR) which was managed by the legendary Elizabeth Taylor, his close personal friend. On the very same day of Hudson’s death, the U.S. Congress designated approximately $190 million to AIDS research which was $70 million more than the original budget request. While these events did not end the stigma surrounding AIDS, attitudes were definitely shifting at this point.

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People Magazine Cover, September 23 1985. Image Credit: anthonypeoples.wordpress.com.

This was the year that AIDS came to the forefront of both public and political consciousness. Suddenly, newspapers began reporting on different aspects of AIDS within society, openly discussing the discrimination faced by people with AIDS. Suddenly, the Surgeon General C. Everett Coop began investigating the spread of AIDS and ways to stop it. Suddenly, the U.S. Public Health Services started distributing suggestions on how to avoid transmission of HTLV-III/LAV (or HIV, as we know it today). Granted, the suggestions only concentrated on mother-child transmission but this was still one of the first government reports that attempted to educate the public on preventing HIV/AIDS.

All of these things happened four years after the first recognized cases of AIDS were reported. But where was the AIDS education before this? I’ve struggled to find any government-lead awareness initiatives that occurred before 1985 when they would have been the most useful. Paula Treichler mentions in How to Have Theory in an Epidemic that the U.S. Public Health Services distributed Scriptographic booklets with information about AIDS transmission in 1984. Unlike most public health documents, these booklets were under copyright and could not be distributed in the following years. When the medical community gave recommendations for AIDS prevention, Treichler also discusses, their language was so vague that it opened up room for doubt and conspiracy. Meanwhile, media  and other public sources before 1985 focused mostly on sensationalist and alarmist stories rather than on facts and information. Attempts to stem this sensationalism were thwarted by stigma and fear (“In San Francisco, studio technicians threatened to walk out if two AIDS victims set foot in the studios of KGO-TV. They were slated to be interviewed for a show called ‘Demystifying AIDS’.” Washington Post, July 11 1983).

The first real education campaigns for AIDS came from the communities most affected, namely gay men. From as early as 1981, people like San Franciscan nurse Bobbi Campbell came forth to raise awareness and promote prevention. Campbell was the sixteenth person to be diagnosed with AIDS, as well as the first AIDS activist. He took pictures of his own AIDS-defining symptoms like his Kaposi’s Sarcomas and posted them on the windows of a local pharmacy, effectively creating the first AIDS-awareness posters. When he began writing for the San Francisco Sentinel and identified himself as the “KS Poster Boy,” he became the first person in America to publicly reveal himself as someone with ‘gay cancer’. With the drag activist group Sisters of Perpetual Indulgence, Campbell helped write the brochure “Play Fair!” in 1982 which was one of the first safer-sex documents. It set the precedent for the 1983 publication How to Have Sex in an Epidemic – One Approach by Richard Berkowitz and Michael Callen. Written with the consultation of medical physician and researcher Dr. Joseph Sonnabend, this was the first medically-accurate safer sex guide that used sex-positive language. Both of these texts were written in a way that did not demonize either the practice of sex or the sexually active reader, providing practical advice on how to transmission of the disease. These practices are today considered the standard for safe sex. As well, this straightforward writing style has become essential for modern-day sex education.

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Bobbi Campbell: San Francisco Gay Freedom Day Parade, June 24 1983. Image Credit: Back2Stonewall.com

By 1982, gay activist groups like Gay Men’s Health Crisis and People With AIDS (PWA) Self-Empowerment Movement began lobbying the government to fund AIDS research and support people with AIDS. These groups and others were the ones that met with political officials in 1983 to change the name of GRID to AIDS, which resulted in the discovery of the disease in hemophiliacs, Haitians, infants, and women. People With AIDS was founded in San Francisco by Bobbi Campbell and Dan Turner. Their movement spread to the East Coast when Richard Berkowitz and Michael Callen began a New York chapter.  Meanwhile, Gay  Men’s Health Crisis was founded in New York by Larry Kramer to “end the AIDS epidemic and uplift the lives of all affected.” He would go on to become a founding member of the more-militant PWA group ACT UP in 1987.

In June 1983, Bobbi Campbell’s San Francisco chapter and the other PWA chapters across the country met in Denver for a conference. Here they drafted the Denver Principles, a document that asserted the social, economic, and individual rights of people with AIDS in seventeen principles. It first and foremost defined the terms of the peoples in question: not “victims” or “patients” (terms that detract agency) but “people with AIDS.” The following principles, which ranged from addressing patient-doctor exchange to discrimination practices to sexuality and sexual behavior, changed the face of modern healthcare in order to accommodate the empowerment of the patient.

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Bobbi Campbell and lover Bobby Hillard on the cover of Newsweek, August 8 1983. This was the second time an openly gay man was featured on the cover of a widespread magazine. Image Credit: Wikipedia.

Bobbi Campbell continued spreading awareness for the rest of his life, even addressing the DNC in 1984. He died at age 32 only two weeks after the DNC speech.

Bobbi Campbell’s DNC Speech, 1984. 

So as we can see, AIDS education was lead primarily by the gay community in the years before 1985. From support groups to healthcare reform to promotion of safer sex, the responsibility of disaster management fell to gay men. On one hand, these civilian-lead initiatives achieved results that would have been impossible for existing authority structures to generate: the rejection of any sex education system besides abstinence-based education, for example, was such a fundamental idea in Reagan’s government that officials like Jesse Helms refused almost every proposal for change even when given proof of abstinence educations’ ineffectiveness. On the other hand, shifting the responsibility of disaster management onto non-governmental gay men meant that ideas surrounding AIDS and gayness were reinforced. For much of the crisis, people felt that their sexual identities rather than their sexual behaviors protected them from the transmission of AIDS, which made the spread of the disease worse and worse. In the end, government involvement earlier on in the AIDS crisis would have been enormously helpful in curbing its destruction. But still, local efforts to prevent the spread and raise awareness were enormously helpful, especially in big cities like San Francisco and New York.

Featured Image Credit: “The Drafters of the Denver Principles.” I’m pretty sure Bobbi Campell is in the lower right corner, Richard Berkowitz is above Bobbi Campbell, and Michael Callen is the man right beside both Campbell and Berkowitz with the string necklace.  http://bilerico.lgbtqnation.com/2013/07/aids_in_nyc_the_first_five_years.php

 

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