November 2011


A quiet anniversary

By Gail Bell
People living with HIV and AIDS, Sydney Mardi Gras, 1990s. © William Yang
People living with HIV and AIDS, Sydney Mardi Gras, 1990s. © William Yang
AIDS 30 years on

Anniversaries have a way of sneaking up on crepe-soled shoes. Thirty years since the disease that came to be known as AIDS was identified, there have been no fireworks, no flagpoles planted firmly on high, previously inaccessible peaks, and, outside the busy network of HIV/AIDS organisations and clinical researchers quietly getting on with their work, there was little to tip off the wider community to this ‘pearl’ anniversary.

The taming of HIV/AIDS is Australia’s good news story. Our swift, egalitarian response – the so-called ‘Australian model’ – made us unique in the world and drew plaudits from the United Nations. Central to the success was the willingness of marginalised high-risk groups (intravenous drug users, gay men and sex workers) to collaborate with politicians, doctors and strategists to spread the message that the virus could not be corralled in Darlinghurst and Kings Cross. It could jump the gap and spread in all directions, conceivably into a bedroom near you, unless simple precautions blocked its path. Harm reduction through safe sex and needle exchange – voluntarily undertaken – corrected the initial rise in infection rates. The graph line turned south and has tracked in a bumpy easterly direction since. The message, driven by pragmatism and informed by grassroots savvy, caught and stuck so well it is hard to imagine a better alternative. (In the US, where needle exchange has minimal official or public support, the HIV infection rate among injecting drug users is 20% compared to our 1%.)

By 1980 an estimated 300,000 people in Europe, the Americas, Africa and Australia had already been infected with the mystery virus, but the news headlines weren’t coming out of Africa. All eyes were on San Francisco, its bathhouses and the 121 American men who had died of a new wasting disease that went by many names, all with the prefix ‘gay’: ‘gay cancer’, ‘gay plague’, ‘gay pneumonia’ and finally the official acronym, ‘Gay-Related Immune Deficiency’ (GRID).

Melbourne historian John Foster left a remarkable, beautifully written memoir that captures and preserves the jittery zeitgeist among active gay men moving around the globe in the early ’80s. He wrote in Take Me to Paris, Johnny:

[…] in the places where gay men congregated, there was a mood I had not known before. While Juan and I had been in Berlin, the homosexual cancer and the violet spots had acquired a new name. GRID had become AIDS. It still sounded strange and it was clumsy on our lips, and, especially here in New York City, it generated apprehension and confusion. 

Juan was Juan Céspedes, Foster’s partner, a young Cuban who would die from AIDS in Melbourne in 1987. Foster died seven years later, also of AIDS. “He had earlier declined to have the AIDS test, not wishing to burden Juan with any pointless sense of guilt should the test prove positive,” according to Foster’s friend, academic John Rickard.

Ross Duffin, a former HIV/AIDS educator and activist, who has been HIV positive for 26 years, recalled living in San Francisco in 1981 “when they stuck that notice about Kaposi’s sarcoma up in the chemist window”. The photo showed a man opening his mouth and pulling back his teeth to reveal blue lesions. The message read: “Watch out – there’s something out there.”

Duffin comments: “I came back to Canberra at the beginning of ’82, but went back again for six months at the end of the year because I was so magnetised by what was going on in San Francisco. The difference between San Francisco in 1981 and a year later was extraordinary. I came back to Sydney and none of it [AIDS] was happening here – except that I knew what was coming.”

Being diagnosed with HIV in those early years was an experience of “psychic terror”, said Duffin, a feeling echoed by John Foster: “The virus makes you obsessive. It settles in your head. It distorts your vision. In the first flood of knowing – or believing – it can make you regard your own body with horror. The blood that is in you is lethal.”

Robert Dessaix captured the “raw anguish” of a confirmed diagnosis in his celebrated 1996 novel Night Letters. Sitting in a cafe with his partner, overhearing the travel plans and career designs of the well-groomed patrons, the protagonist writes:

I felt like a scaly bag of filth about to split and ooze all over the terra-cotta tiles. I thought they must be able to sniff me rotting, I felt like an affront to them and wondered why they hadn’t asked for me to be removed. They were all going somewhere, you see, and that’s what I couldn’t bear to look at. 

The early Australian experience mirrored the American trajectory in that the vast majority of infected individuals were gay men. The GRID acronym evoked a snappy equation connecting gay male sex with death, with no room in its blunt cause-and-effect message for other possibilities. It would be years before we learnt that the infectious agent moved from living cell to living cell in semen, vaginal fluids, breast milk, and in blood, the essential river that flows in all of us. Straight men and women were vulnerable too.

Through Positive Heterosexuals I met Jodie, a 42-year-old woman from Newcastle, NSW. In 1990, two months before her twenty-first birthday, Jodie was diagnosed HIV positive at St Vincent’s Hospital in Sydney. She’d been dating a man who later admitted to knowing he was positive but had neither disclosed his status nor used precautions. Neither had Jodie, but as she says, “In those days the worst that could happen, I thought, was you could get pregnant.” Her doctor advised her to put her affairs in order: “He said, ‘you’ll be dead by 25.’ In one stroke, all my dreams went out the window.”

Reeling, Jodie confided in her family. She remembers her mother pouring boiling water onto the plates and cutlery and disinfecting the toilet and bathroom after (and sometimes during) her visits. In suburban Newcastle, far from the nerve centre of St Vincent’s and the rapidly evolving support networks for HIV, she faced the kind of social ostracism that notoriously drove Eve van Grafhorst’s family to emigrate to New Zealand in 1986; Eve, then a kindergarten student, had contracted HIV from a blood transfusion at birth and died when she was 11.

I interviewed Jodie at length by telephone, ordinarily a convenient way to talk across distance, until I learnt that she was speaking to me from the garden of her house, out of earshot of her daughter’s friends. Two decades on from the long soul-searching train trip home to the suburbs, Jodie was still hiding her status from the neighbours.

My friend Rick, who grew up in London, gives another picture of what it was like to be young and confronted with the ominous new reality of HIV. Born into a family with strong religious beliefs and educated at a religious college, he had been a closeted teenager who was drawn to men but had not yet acted on his impulses. He started telling people he was gay, aged 20, in 1984. “Just as I was on the precipice of coming out, this terrible thing happened,” he says. “The newspapers were full of ‘gay cancer’, all the messages were frightening. I found it difficult to process. I wasn’t out and proud, I was out and tentative. The clear message was: being receptive [receiving anal intercourse] was dangerous. A mistake could kill you. It blighted my sex life for ten years.”

He and his peers were sympathetic to the first wave of positive men. “Altruism was in the air. It was an amazing time. The rally call went out to kickstart a response. We responded in giving and loving ways, there were petitions, we raised funds.”

Jodie’s journey, ungraced by community solidarity, progressed to marriage (with full disclosure) and a child when she was 24: “I knew the risks of transmission, but I had the support of St Vincent’s, and I didn’t breastfeed. I crossed my fingers and hoped.” Her daughter was born negative. Her second pregnancy, however, was a different story. With an increasing viral load and plunging T-cell count she was given azidothymidine in her third trimester, and her safely born child was medicated with the AZT drug for the first six weeks of his life.

In 1996 Jodie became critically ill. Back at St Vincent’s fighting pneumocystis pneumonia she was given the new antiretroviral drugs that would mark the turning point away from ‘HIV, the death sentence’ to the new and hopeful concept: ‘living with HIV’.

“We don’t do ‘gay’ today the same way we did it in the ’80s,” Ross Duffin told me. For a working definition of ’80s gay culture, I turned to Robert Dessaix’s masterful 1994 memoir, A Mother’s Disgrace:

Gayness, as I found, is not the same as homosexuality […] gayness as such was an inner-city phenomenon, the Annandale to Bondi belt was the hive the bees clustered around, performing their rituals and establishing a culture, which is what gayness is all about. 

A feature of the subculture was the gay bathhouse, which Dessaix conjured as an institution with “highly ritualised” diversions in which “desire was given its head”: “These clubs did an enormous amount to subvert the preposterous notion that sex must be accompanied by certain sentiments (love, loyalty and so on) in order to be legitimate.”

The sex clubs, backrooms and saunas of the ’80s are now referred to collectively as ‘sex-on-premises venues’. “To those on the street – perhaps even to those who might sometimes go inside – this was an illicit zone,” wrote Dessaix. “But once inside you found the ‘illicit’ had become magically the norm.”

In my research for this essay I often found myself outside on the footpath, at the right address but slightly nervous about knocking: not trying to get into the saunas, rather trying to get AIDS organisations to talk to me. I read a lament by an older activist: “The history [of AIDS] that’s being done is being written by journalists or medicos, not by us.” When I did make contact with the organisations it was often mediated by an insider who vouched for my integrity, leading me to wonder if, as an outsider, I was being judged not quite equal to the task.

Last year, 1043 new cases of HIV were diagnosed in Australia. I wanted to know why it was still happening.

Through Positive Life, I found William, 28, who has been positive for four years. “I’d had the safe-sex message drummed into me since primary school,” he says. “My generation doesn’t have the same history as the older guys. I personally don’t know anyone who’s passed away from AIDS. Unsafe sex is a reaction to being told not to do it.” Even with foreknowledge, even though he held a position as a safe-sex officer in an organisation, he abandoned condoms and “got around” for four months – a spree that culminated in a persistent rash on his arm, fevers, vomiting and two hospitalisations.

Many of William’s friends behave, he says, like gay men in the late ’70s. Their behaviour is both promiscuous and “clueless”. But how can they be clueless when the past is so close on their heels? William seems to be able to hear the stories and simultaneously “know and not-know”. He is critical of some AIDS organisations, put off by the dour faces of survivors, and wants more input from his generation at the boardroom tables.

I put his criticisms to Rob Lake, executive director of the Australian Federation of AIDS Organisations (AFAO). Lake admits that AIDS councils are struggling with the disengagement of this younger group. They are the hardest cohort to get involved in research and focus groups. But, he says, young men such as William are in the minority of newly diagnosed HIV cases.

Lake says that the average age at diagnosis in NSW is 39 years. These men have often been ‘out’ for 20 or so years, they’ve kept themselves negative; then some of them end long-term relationships and start new ones, but don’t have ‘the conversation’, don’t check their partner’s status. This may be because tests take two weeks and require two appointments. (AFAO has recently licensed a new one-hour test, which may slow the ongoing transmission figures down the track.) Lake also speaks of the new risks to Australian travellers, gay and straight, who work and play overseas.

Ross Duffin told me that in the ’80s “a diagnosis put us into shock and traumatised us”. His peers chose to live inside their HIV identity and to “get involved” (many gave up big careers to go into activism). “Today’s young positive guys are encouraged to live beside HIV, to keep their goals, stay normal. Their greatest difficulty is in accepting that HIV once led to AIDS, which led to death.”

Other long-term survivors I spoke to believe the greatest challenge to current educators is in trying to make 20 year olds think about HIV like 50 year olds. “We (the older generation) can’t put our heads where their heads are, and vice versa.”

Could this be the nub of William’s cool appraisal of older gay men? Because he isn’t living the doomsday lore he’s heard so much about?

I spoke to Alan Brotherton at the AIDS Council of NSW (ACON) and mentioned Jodie’s story. She has trouble finding a dentist, keeps her HIV status secret from all but her closest friends, and is still treated like a leper in regional public hospitals. Satellite support networks are useful but, she says: “I don’t bother with ACON because it’s all about the gays in Darlinghurst.”

“It is difficult for an organisation established [in 1985] for a sexual minority to be a general service provider,” Brotherton says. “Our logical connection is gay to gay. We have a community support network that provides transport and home care to the straight community but primarily our clientele are gay men.”

Of all HIV-positive cases up to 2009 in Australia, 92% were male. Brotherton recognises that isolation and stigmatisation are “very sad” consequences for positive women. He also speaks of positive straight men who retreat into the background, often because there is more stigma attached to being thought of as gay than having their HIV status known.

In many countries (in Africa, for example) HIV is considered a heterosexual epidemic. At the end of 2009, women accounted for just over half of all adults living with HIV worldwide.

Thinking back to William’s comment that older men lacked a sense of humour around AIDS, my memory threw up a long-ago afternoon on the balcony with my friends Ewen and Sol. Wrapped in a blanket, his eyes sunken in caves, Ewen watched us drink summer wine. He’d been quiet, then he smiled and told us a story. He was seeing an alternative therapist now that the “other stuff” – the chemo-poison, as he called it – had stopped working.

“I’m not turning orange for nothing,” he said. “This new doctor gives me vitamin C injections, straight into the vein. At the same time he’s got me going to laugh therapy. One apparently complements the other.”

This was 1989. “Well,” he said, “the therapies came together last week when Sol drove me to Terrigal Beach. I bent over to get my towel out of the boot, and let forth the biggest fart you can imagine straight into the path of Mr & Mrs Average heading for the sand. I nearly wet myself laughing. I couldn’t stand up, I went limp from shaking.”

Ewen died in January 1990. I went limp with grief.

Worldwide almost 30 million people have died from AIDS since the beginning of the epidemic. In 2010 Australia lost not one single person from this disease. That is the good news.

Gail Bell
Gail Bell has worked as a pharmacist, educator and writer. Her books include The Poison Principle and Shot: A Personal Response to Guns and Trauma.

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