On how the AIDS crisis of the 80s united the queer community

A look at how far we’ve come, and how far we have to go.

Originally published in SBS Sexuality, 2 February 2017. 

It was a decade defined by a disease. 

First reported in the United States in 1981, and then in Australia in 1982, by the end of the 1980s AIDS had become a global epidemic, killing close to 90,000 people in the US alone. 

For the queer community – and gay men in particular – this period was especially difficult, with queer hotspots like San Francisco, New York, Berlin and Sydney being decimated as tens-of-thousands of people died within the space of years, making the ’80s one of the toughest periods in queer history. For a community that was just gaining its voice, AIDS pummelled through like a wrecking ball. But the period also marks one of strength and resilience that continues to this day. 

The period prior to the AIDS epidemic was crowned by a new sense of self-confidence for queer people within our political, personal, and sexual lives. In many ways AIDS slammed on the breaks. With the infection of five gay men in Los Angeles being the first reports of the disease, AIDS was initially labelled a ‘gay cancer’ or ‘gay plague’, or later in official terminology Gay-Related Immunodeficiency (GRID). In turn, AIDS was capitalised on as a way to halt the sexual revolution of the 1970s, turning what was once a liberating force into a tool to be used against us.

As Jennifer Power explains: 

“HIV/AIDS was depicted as a disease of immorality and deviance. Conservative media painted a picture of gay men as irresponsible and dangerous, guilty not only of their misdirected sexual predilections but of their potential to infect and kill ‘normal’ Australians.” 

After 15 years of social progress, AIDS was used as a way to turn back the clock. It was soon suggested that gay and lesbian events be banned, that there be compulsory HIV testing for all gay men and that people living with HIV/AIDS be quarantined.

Meanwhile, public violence towards homosexuals spiked, with queer bashings and murders becoming increasingly common. Many Governments did little to halt the trend, instead perpetuating this discrimination. The Ronald Reagan Administration, for example, largely ignored the epidemic, delaying progress on containment and drug development and at one point even joking about the deaths of gay men. 

Yet, at the same time, the AIDS crisis also represented something else: a time in which queer people stood up once again to fight for our lives. 

This fighting spirit was a global phenomenon, but was led in many ways in the epicentre of the disease, the United States. In 1987, a group of queers met together in New York to form ACT UP, a direct action organisation advocating for people living with HIV and AIDS. 

ACT UP took AIDS action to the streets, protesting at Wall Street, Cosmopolitan Magazine (following the publishing of an article with significant misinformation about the disease) and even the US Post Office. In probably its most successful action activists shut down the Food and Drug Administration (FDA) for an entire day, demanding greater access to experimental drugs that were being delayed by the Agency.

ACT UP didn’t just use direct action for the sake of it. It chose its targets very strategically and, like other AIDS organisations, was based on a strong ethic of putting the community first. With a limited official response to the disease, gays, lesbians and other HIV/AIDS-positive people took action into their own hands. People researched and became experts on the disease and potential treatments, using this as a tool for campaigning. Activists created community-based solutions, including prevention campaigns and ‘buyers clubs’; collectives of people who would, often illegally, pool their resources to import experimental drugs. These clubs represented a form of community-based medical intervention, with HIV/AIDS-positive people bypassing official structures that were to leave them to die.

When they were diagnosed, HIV/AIDS was seen as a death sentence: the Grim Reaper. But medical science eventually found ways to hold AIDS back. Long-term survivors, some now feeling a survivor’s guilt, recall preparing to die – and remember the many who did.

In Australia, the story was similar, although slightly different. With Labor in power, Australia had a more progressive approach to the disease, with the Government working more actively to contain the spread of HIV/AIDS and to find a treatment. However, this community-focused approach was still required, with organisations such as ACON and the Australia Federation of AIDS Organisations (AFAO) taking a lead within this Government response to ensure community needs were met. Branches of ACT UP also sprung up around the country late in the decade, with Australian queers organising their own Buyers Clubs, and taking targeted action toward the Australia Drug Evaluation Committee, which was responsible for the distribution of drugs at the time.

The action of activists in the US finally put HIV/AIDS on the national agenda, resulting in the passing of the Ryan White Health Care, which provided funding for low-income and disadvantage people living with the disease. The 1990s saw the development of new drugs to treat HIV, with the highly active antiretroviral therapy (HAART) becoming a new standard that allowed people to live with HIV with an increasingly lower threat that it would lead to the development of AIDS. This combination of drugs, developed in part due to the knowledge and activism of AIDS activism, remains the most common treatment today. HAART has effectively stopped the progression of AIDS in developed countries to the point where in 2016 Australian medical professionals declared AIDS to no longer be a public health issue.

In Australia, activism from gay and lesbian organisations made our country’s response one of the most effective around the world. The ‘Australia model’ – considered extremely egalitarian in its approach – contained the spread of the HIV/AIDS so effectively compared to other countries that is was lauded by the UN as a best practice way of dealing with the epidemic.

Many also argue the benefits of AIDS activism go well beyond these medical outcomes. Jennifer Power argued the epidemic gave gays and lesbians “unprecedented opportunities” to “construct public knowledge about homosexuality”.

She argues:

“Before this, media and political debate on homosexuality in Australia had been dominated by criminologists, psychiatrists or the church. Gay men and lesbians were spoken ‘about’ but rarely spoken ‘to’.

“In response to HIV/AIDS, gay activists built a legitimate public profile for the gay community, allowing gay men and lesbians, as well as people living with HIV/AIDS, a human face and encouraging a more sympathetic attitude toward HIV/AIDS.”

In many ways the legacy of the 80s is mixed. While much of the sexual conservatism preached during the AIDS crisis has become ingrained within queer consciousness, the fighting spirit of the 80s does live on.

This is best represented by the recent development of Pre-exposure Prophylaxis (PrEP) – a medically proven preventative treatment for HIV – which has once again faced obstruction from global Governments. In response, many queers have acted as they did during the peak of the crisis, forming community organisations and collectives that have built knowledge about the drug, advocated for law reform, and shared information about how people can legally access the drug at affordable rates. This has all been community-run, with queers taking responsibility where Government Agencies have often fallen down.

Despite this progress, the HIV/AIDS epidemic is still a major issue. While doctors have declared the ‘end of AIDS’ – at least in Australia – HIV infection rates remaining stubbornly stable. Globally, the AIDS epidemic has moved from gay centres to attention being focused on developing countries. While AIDS related deaths have fallen a massive 45% since 2005, with people in particular having greater access to treatment, global HIV infection rates remain steady. With over 36 million people currently living with HIV/AIDS, there is still a lot to do.

This article was originally published on SBS News. Click here to view the original. © All rights reserved.

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