IN AUSTRALIA

What you name a disease is a critical thing because it impacts how people respond to it, how much they judge themselves to be at risk, what kind of research gets done, and how deadly it becomes. That’s why the horrific and drawn out consequences of the 1980s HIV/AIDS crisis were already in motion when experts named the virus affecting gay men in America: “Gay Related Immune Deficiency” (GRID). GRID was soon renamed “Acquired Immune Deficiency Syndrome” (AIDS) but the association between gayness and disease stuck around. Within the same period when many LGBT Australians started enjoying more rights and freedom, the AIDS crisis decimated their communities and upended the intimate lives of gay men in particular. Reports about a “parasitic pneumonia” first emerged in the Australian gay press in 1981, yet most people only became aware of the severity of the virus when it started to affect their immediate social groups. Cishet people certainly didn’t know about it, or, if they did, arrogantly assumed it wouldn’t affect them. Meanwhile, gay community leaders saw what was happening in America and took it as an immediate and urgent warning that Australia was likely to be next. They established AIDS Councils and Phone-A-Friend helplines in every state and territory. But their impact was limited because the government didn’t feel obligated to respond to the preventable deaths of queer peopele–such was the social mores in the 1980s. Then, in 1983 in Queensland, three babies died as a result of contracting HIV through infected blood transfusions. The media had a field day, denouncing people living with the virus as “unclean” and accusing gay men of deliberately donating contaminated blood. Around the country, groups of angry men went into predominantly queer neighbourhoods bashing gay people and kicking in the doors of gay bars. The babies, and thousands of others like them, were likely victims of the Factor VIII blood contamination scandal. A pharmaceutical industry, greedy for profits, would take samples from paid blood donors around the world and mix them together. Among the donors were prisoners, sex workers, and poor people suffering from HIV. But companies kept selling the contaminated products, even after new heat-treated versions were available, transmitting HIV around the world. But the “contagious gay disease” narrative already had a death grip on the media. They pathologised whole classes of people–sex workers, drug users, homeless people, and LGBT people–as dirty and diseased, addicted to casual sex and, in doing so, spreading HIV to “innocents”. Terms like “gay cancer” and “the gay plague” were splashed across newspapers. The media ran its infamous “Grim Reaper’’ commercial, personifying HIV (and those with the virus) as the literal harbinger of death–a baffling choice at a time when gay men were being attacked for using public toilets. uncovering the aids epidemi c t h e i m p a c t o f a i d s i n a ua i d s e p i d e m i c t h e i m p a c t o f the gn ncoveri u a li tra s

HIV panic compelled many to conceal their positive status. You could be run out of your school, workplace or neighbourhood if people suspected you were HIV-positive. Doctors, the gay press, and AIDS Councils all attempted to protect people from such prejudice by encouraging a “don’t ask, don’t tell” policy. Unfortunately, this had the opposite effect, isolating positive people by silencing discussions about HIV, even within their intimate social circles.

While the physical symptoms of AIDS were devastating, the visible symptoms caused another type of lasting psychological wound. Showing rapid weight loss and purple spots not only exposed you to the ostracism surrounding HIV, but signalled that you’d entered the final stage before death. Some people went to great lengths to prolong their life and avoid gaining “the look”. Others chose euthanasia to avoid any physical side-effects, preferring to die looking the way their friends remembered them. This triggered a culture-wide change in how queer people perceive our bodies; becoming conscious that our health might rapidly and irreversibly deteriorate without warning.

One milestone for HIV visibility was the Third National AIDS Conference in 1988. When organisers invited the audience to declare their status by standing together on stage, hundreds of audience members “outed” themselves, sending shockwaves through the community. Prior to this, most accounts of HIV were anonymised, even in the gay press. But as the caseload climbed, men started to challenge stigma by appearing in the media as the “face of AIDS”. This was valuable PR work that needed to be done, but sadly some men were motivated by their guilt at not coming out as HIV-positive earlier.

By the late 1980s, popular support was

mounting for the Hawke Labor government to tackle HIV. However, the government couldn’t be seen to be spending money on telling gay men how to have sex, or drug users how to inject safely. Imagine! So instead, they funnelled money to trusted community groups who could. Once activists were in charge of devising and delivering health policy, they made sure that Australia’s approach was strategic, creative and sex positive–like encourgaing people to wear a safety pin to show that you were into safe sex. By 1986, Australia achieved one of the fastest drop in infections in the world but it would take some time for the number of AIDS deaths to fall.

Early development of a cure suffered as a result of the government being tightfisted, as well as clinging bigotries in the medical field (after all, homosexuality was classified as a mental illness until 1973, squarely within many experts’ lifetimes). That’s how the first antiretroviral medication, AZT, ended up costing $10,000 for an annual supply. And the side effects were so severe that many survivors still believe that their friends were killed by AZT, not the virus. But news of a cure reinvigorated the community. Activists urged positive people to volunteer for every new drug to improve their health…or at least work towards a cure.

Meanwhile, AIDS councils started bulkordering medication from overseas and distributing it at illicit “Buyers Clubs”. But there was only so much medication to go around, and activists were often forced to choose between saving their friends or the gravely ill.

Over the following years, gay publications filled with pages upon pages of obituaries. Most people in their twenties and thirties don’t attend a lot of funerals, but LGBT people reported constant funeral burn-

out. Worse were religious families who often refused to mention the deceased’s sexuality, partners, or gay friends. So queer people came up with creative, irreligious ways of commenorating their friends–in “HIV Survivors in Sydney”, Cheryl Ware describes one funeral held in a nightclub where the ashes and bone fragments of someone who had died were cast out over the dancefloor, because that’s what he would have wanted.

For those living with HIV, volunteering was a lifeline that sustained them through crippling grief and isolation. After all, the depleted gay nightlife only served as reminder of the devastating toll the epidemic was taking on the community. Volunteers provided essential palliative care, staffed needle and syringe programmes and telephone helplines, and served on boards of management. Their dedication enabled HIV positive people to circumvent the shame of the virus and make informed choices about their care. Volunteers resolved misinformation and HIV panic (“I was served coffee by a poofter; do I need to get tested??”), and fulfilled the wishes of those who wanted to die at home, rather than in a hospital.

The introduction of Highly Active Antiretroviral Therapy (HAART) in 1996 allowed positive people to live with HIV by preventing it from advancing into AIDS; a watershed moment in a long, and agonising fight for effective treatment. But HAART didn’t reverse AIDS-related dementia and nerve damage, and some positive people were turned off treatment altogether after witnessing the effects of AZT. On an emotional level, the development of a cure meant that survivors had to confront the accumulation of grief that had built up over years, and figure out how to rebuild their lives after being certain they were going to die. Although Australia’s top scientists declared the “end of AIDS” in 2016, 29,000 people are still living with HIV in Australia. In twenty years, the virus progressed from being essentially a death sentence to a chronic condition that affects more straight people than LGBT people. Today, HIV survivors are considered disenfranchised grieves, in a society that rarely acknowledges their relationships and the losses they endured. It is against this backcloth of unimaginable loss that we must unpack and process our history.

scan to visit the AIDS memorial quilt project!