Reciting the names of the dead: how Australia’s response to HIV/Aids was emotionally – and politically – powerful | Leigh Boucher

AIdentities have always been fraught with political and emotional volatilities. The possibility of transmission through blood or sex, combined with its emergence among marginalized and criminalized populations, has created a potent mix of primal terror and terrifying prejudice.

It can sometimes be difficult to remember how much misinformation, fear and outright hostility shaped knowledge and experience of AIDS during the first decade of the pandemic. At that time, a positive HIV test result was a terminal diagnosis, and medical knowledge about transmission and treatment was still unclear.

In Australia in the 1980s, the shift from an epidemiological focus among gay men, sex workers and intravenous drug users to moralistic endorsement and discrimination was easy. Some Australian parliamentarians and religious leaders have even suggested the forced imprisonment of anyone who tests positive for HIV.

Today in Africa, shame and morality combine in a different way. More than half of the world’s population living with HIV and AIDS is in southern and central Africa, where prevalence among adults in some countries exceeds 10%. Here, transmission is primarily heterosexual, and it is the gap between assumptions of monogamy and the gendered realities of sexual practice that poses the greatest public health challenge. It is therefore the sexually vulnerable who are experiencing the most worrying increase in transmission rates – namely among younger women.

Public health experts around the world knew it would be difficult to overcome the powerful forces of shame, stigma and fear that shape the response to AIDS. That’s why information officers at the World Health Organization invented World AIDS Day on December 1, 1988. They hoped it would become a powerful weapon in the fight against AIDS and misinformation.

Within queer communities, World AIDS Day has always had a memorial and politicizing objective. Already in 1988, just six years after the first diagnosis in Australia of what had initially been described as “Grid” (gay-related immune disorder), various types of memory practices were evolving to make sense of the growing loss in queer terms and act as a pressure point for shaping health policy.

That year in Sydney, World AIDS Day transformed into a moment where those most affected by existential threats were able to consider the memories, the stories, the present and the future of the pandemic in a way that made sense to them.

In the afternoon, activists, affected communities, government leaders, bureaucrats, health workers and carers came together to expose Australia’s coverage of AIDS for the first time. During the proceedings, the Rev. Jim Dykes read the names, one by one, of the lives commemorated on his panels.

The fact that the AIDS quilt was sometimes ironically described as the “doona of death” reminds us that a strange sense of irony remained a crucial dimension in the lived experience of AIDS, even if these jokes sometimes tended to the edge of comfort.

Later that evening, a larger gathering gathered at Martin Place for a rally that was at once an activist demand for government funding, a thank you to an army of carers and volunteer workers and a memorial to the lives already lost. The following weekend saw a series of social activities and club nights raise funds for carers’ organisations, including a party for the carers themselves, many of whom were already showing signs of fatigue.

In the years to come, the night rally will become an event bringing together nearly 10,000 people in the Domaine. The recitation of the names of the deceased became the emotional anchor of the debates. Community leaders remember building up the courage to read these names into the microphone and feeling a deep sense of the beauty and warmth of their effects.

That this recitation took longer and longer as the 1990s unfolded was a stark reminder that the tidal wave of AIDS was decimating queer communities. By the mid-1990s, gay men described losing their partners and friends with such concentration that their entire social and intimate world seemed to disappear. A man I interviewed recently described walking down a street in Darlinghurst in 1996 and realizing that in every house he passed he knew someone who had died.

In Australia, the worst of the AIDS crisis was brought under control, first through the incredible success of safe sex campaigns and needle exchanges, and then, in 1996, through the emergence of “combination therapies” which transformed HIV/Aids from a terminal diagnosis to a chronic diagnosis.

While comparable national contexts, such as the United States and Britain, faced increasing rates of HIV and AIDS diagnosis until the 1990s, Australia’s peak occurred in 1988, followed by a sharp decline.

The only possible explanation for this is the remarkable success of safe sex campaigns, led and designed by campaigners and supported by State and Commonwealth governments, sometimes quietly, convinced by the case that moralizing about sex would not prevent transmission.

Researchers now describe the “Australian response” to AIDS as both a historical phenomenon and a public health model to follow. His success was remarkable.

There is much to celebrate in the story of our national model, not least because it is a powerful example of how a public health disaster can be managed and mitigated when government policy and funding draws on community knowledge and expertise.

However, there is also a heartbreaking historical irony in this Australian story.

This success means that, in historical and epidemiological terms, HIV/AIDS has remained remarkably concentrated. In the late 1990s, between 80 and 90% of all HIV/Aids diagnoses recorded in Australia were among men who have sex with men.

The fact that most gay men began wearing condoms in the mid-1980s in Australia meant that all Australians were protected from the worst possibilities of the pandemic. The government did not need to quarantine gay men: their own sexual practices ensured that the consequences of HIV/Aids would remain contained.

We have now learned to describe HIV/AIDS as a pandemic because of its global circulation. But the impacts of this circulation have been uneven. The HIV/AIDS pandemic has perhaps always been experienced and unfolded as a set of interconnected “epidemics,” shaped by national and local conditions.

The consequences of HIV/AIDS have been and will continue to be caused by the actions of the humans who faced them, as well as the choices of those in positions of authority and the ability to do something about it.