On Mardi Gras Parade Day, and with the on-going debate about to plebiscite or not to plebiscite (marriage equality), this is a story about a time when Australia showed remarkable leadership. In the 1980s, when the HIV/AIDS epidemic hit and the rest of the world were slow on both policy and action, the Australian response is a success story in community and policy working together to achieve something that happened nowhere else in the world as it did at that time. Larry Kramer’s fight in the US, ultimately, was not ours. The proof: today, the rate of AIDS in Australia is 1.3 per 100,000 population; in the US it is 14 per 100,000.
The new Federal Government elected in 1983, and led by Prime Minister Bob Hawke, worked with doctors, activists, educators, advertisers, research institutions, and community sectors that included prostitutes and drug dealers (who got on board with handing out free clean needles and condoms). HIV testing, counselling and hospital services were set up and accessible to all, free and confidential. This coordinated and effective education campaign at all levels of society saved lives.
The Grim Reaper national advertising campaign (1987) had its critics but succeeded in scaring people into taking safe sex seriously and it was made everyone’s problem—not only gay men, blood transfusion recipients or drug users. Those who assumed, wrongly, that only gay men were at risk, didn’t see the young women who died. Nor did they see the married (supposedly straight) family men turning up at Albion Street Clinic with HIV/AIDS diagnoses who were living double lives—their secret life being their homosexual life. The young male prostitutes who worked on ‘The Wall’ (Darlinghurst Road, now the National Art School) said that a fair number of their clients had child seats strapped into their expensive European cars. Thinking about those men and their families, for me, was proof of a society’s stupidity: how could forcing people to live hypocritically and against their true selves be better for anyone?
To the younger generation, 1984 is like talking about WWI today.
Bill Bowtell, in Transmission: the Journey from AIDS to HIV
And for the generations alive in 1984, who lost people they loved to HIV/AIDS, it felt like WW1. History, even relatively recent history, guts the pain of the intimate past and turns people and facts into an emotion–free narrative: what has meaning for one generation, doesn’t for the next—except as experiences that happened to other people.
Bill Bowtell, the Chief of Staff to Health Minister Neil Blewitt and instrumental in Australia’s highly regarded response to HIV and AIDS, knows too that the loss, fear, stigma, homophobia and ignorance of those times must seem like an abstract experience to the generation of young people in 2016. And yet, the AIDS crisis created an LGBTI community unified in their fight for equality and better experiences for this generation.
People now live long lives with HIV/AIDS but not without drugs and treatment. (There is no cure). But before the mid 90s, when combined retrovirus drugs became available, people died (many of them at the beginning of their sexual lives) because they had unprotected sex. And if you were at the start of your young adult life, as I was, it’s impossible to not remember the people who aren’t here anymore because of HIV/AIDS. The truth is that the loss was so shocking, words don’t come close to the ragged hearts and grief which took tore at the imagined futures denied and the people left behind.
I was at university, living in Darlinghurst, when a friend was diagnosed with HIV. I was well aware of the homophobic world but it was not where I lived. My inner city social group in Sydney was an integrated mix of gay, lesbian and straight—we went to the same bars, clubs, parties and cafes, lived in shared houses, studied together, and worked together doing crap jobs to pay the rent. In that milieu, being gay was not ‘other’ or a big deal, but understanding that friends and friends of friends were sick and dying for having sex, was a very big deal. Five years into the AIDS crisis, some people had lost so many friends they were traumatized and unable to cope themselves; it’s not exaggerating to say that they went mad with grief. Others got involved in raising money, and volunteering not only because that was what was needed, but because it helped them deal with their own sorrow.
Albion Street Clinic, Surry Hills
I don’t remember exactly what drove my decision to volunteer at the Albion Street Clinic in Surry Hills where there was (and is) counselling, support, medical research and information services. All I knew was that I didn’t know much and if I knew more my friend—and others I knew with the disease—might feel less freaked out, and so might I. Not being a doctor, nurse or a psychologist, I was unsure what I could do that was useful but I turned up anyway. On arriving, and asking if I could volunteer, they looked me over and assured me they had use for a young, straight woman like me on the AIDS Hotline.
After some preliminary training, I was put on the phones. As a hotline counsellor, I answered calls about what was known about HIV/AIDS, how to have safe sex, how to avoid transmission, and get tested, how to pass people on to experienced counsellors and psychologists if required, and how to listen when people simply wanted to talk.
I quickly found out why they had use for someone like me.
Way too many callers were paranoid, ill–informed heterosexuals who asked questions like: “I was served coffee by a poofter, do I need to get tested?” or
I was walking down a path and this guy in front of me—who looked gay—scratched himself on a branch and I got hit with that branch when I walked past. (Rising hysteria) Do you think I have AIDS?
I kid you not. My colleagues (gay men mostly) told me to behave: they know not what they do, they told me. Stay cool and give them the information as if you work at the Zoo and are directing them to the platypus enclosure (not quite, but you get my drift).
It wasn’t always about having to be polite to ignorant bigots. Some callers simply wanted clarification on transmission and what was “safe” but were too scared to ask their doctors, parents, lovers or friends. There were a lot of married people who called—mostly men. The rule on the hotline was that no-one knew what went on in other peoples sex lives so assume nothing. Judgement also had no place, nor use. Just because people were heterosexual and/or ‘married’, or said they were monogamous didn’t mean they were or that one or both partners hadn’t engaged in high risk behaviour, at some time, such as sharing needles or had unprotected sex with others who might have been exposed to the virus.
Contrary to the moral panic of the day, it wasn’t as if promiscuity was to blame either—all it took was one encounter; the virus doesn’t discriminate between virgins and the sexually experienced. I met a beautiful 21 year-old art student diagnosed with HIV who’d had few sexual encounters and was diagnosed with AIDS. His parents sent him to the US for experimental treatment—he died in his sleep on the night he arrived.
A regular on the hotline was a woman who would call from a phone box in a country town. I still think about her—as a human being of startling courage and kindness. She called the hotline because she had no-one to talk to. She’d lost a lot of friends but not because they’d died. Her husband was a farmer and dying from full-blown AIDS. He told her the truth: that he’d had (unprotected) sex with male prostitutes. She said she didn’t care—she loved him and she wasn’t going anywhere; she would look after him until the end.
There was no blame, no recriminations, no self-pity. She said he had been nothing but a wonderful husband to her and it was a privilege to look after him. It was the people in the town who were the problem. People they had known for decades, and knew he was sick with AIDS, never called, the invitations to social events stopped, so-called friends were silent and absent. Their calls for help went un-answered.
In the language of dark ages morality: they were shunned. She said she didn’t care about herself, but she feared the shame her beloved husband suffered was almost worse than the disease.
While the services and support community were in the cities, especially Sydney—there were people dying who hadn’t told their families they were gay, let alone dying of full blown AIDS. I’m an atheist, and not given to phony praise, but Ward 17 South, the first dedicated HIV/AIDS ward in Australia at St Vincents Hospital in Darlinghurst, set up in 1985, was a holy place—the doctors, the nurses, sisters of charity, the carers (and the board of the hospital who agreed to its establishment).
They gave superlative support, not only to people who were dying in highly traumatic circumstances (being alone, horrifically ill, not wanting to die) but also to their families, friends and lovers reeling from the reality of the illness and imminent death. They set an example, not only for the rest of the health care system but to anyone who witnessed the best of what human beings are capable.
At the 2014 International AIDS Conference in Melbourne, A Witness Seminar on ‘Communication and Health Policy creation during the Australian HIV/AIDS Crisis’ was specifically designed to hear the experiences of key figures, across all sectors involved in the crisis during the 80s and 90s. There were doctors, activists, journalists, health professionals, carers, former politicians, bureaucrats, advisers. (It was also recorded so it is functions as a primary source document to add to the oral historical record).
When I was reading about this seminar recently, I came across a comment that reminded me of the work Good Pitch² Australia fosters and encourages. Doctor Waghorne, the organizer of the event made the salient point that all the great work done, and the harm minimization that was achieved was neither straight forward nor conflict free:
This involved an extensive program of prevention, education and other public health initiatives that were implemented across sectors…All of those things were hard fought. All of those things needed to be negotiated and worked through.
And so it must go on.Albion Street Centre, Bill Bowtell, HIV/AIDS, International AIDS Conference