A time to be loud and furious: AIDS activism in Australia

A time to be loud and furious: AIDS activism in Australia

HIV Australia | Vol. 12 No. 2 | July 2014

By Dr Abigail Groves

Films like Dallas Buyers Club, which won Matthew McConaughey an Oscar®, and United in Anger, a history of ACT UP, have turned HIV activists into heroes.

But what is striking about these movies is that the events they depict are placed firmly in an historical context. This is a time that has passed.

The urgency of the AIDS crisis has largely, and thankfully, disappeared – at least in the developed west. Yet there is a certain nostalgia for the innovation and excitement that AIDS activism generated.

‘People are suddenly interested in talking to me,’ says Lloyd Grosse, Sydney DJ and former HIV activist. ‘It’s like we are the heroes of the AIDS movement’.

Grosse lays claim to being the first Australian to come out publicly as HIV-positive and an old, yellowed copy of the Sydney Star Observer suggests he may be right. It carries a picture of Grosse in an ad encouraging gay men to ‘take control’ and get tested for HIV.

The piece now seems innocuous – another ad for HIV services, of the kind familiar to any reader of the gay press. More striking to me are the bouffant hairstyles and high-waisted pants of the early ‘90s. But there is something from the Sydney Star Observer of twenty years ago that I had forgotten: the awful, gut-wrenching death notices.

‘There was one period,’ Lloyd says, ‘when the Bobby Goldsmith Foundation had five clients and seven friends die in one week. One week.’ Events like these put Lloyd Grosse’s decision to come out in perspective.

‘An activist,’ writes Eve Ensler, author of The Vagina Monologues, ‘is someone who cannot help but fight for something. That person is not usually motivated by a need for power, or money, or fame, but in fact driven slightly mad by some injustice, some cruelty, some unfairness. So much so that he or she is driven by some internal moral engine to act to make it better.’

The AIDS candlelight vigil in Sydney, as depicted on the cover of the National AIDS Bulletin, November 1993. The NAB was a monthly bulletin produced by the Australian Federation of AIDS Organisations. Photo: Jamie Dunbar.

Anger and a sense of injustice are recurring themes in the accounts of AIDS activists. The spectre of death and dying added urgency.

‘They were terrible times, just terrible. I was angry,’ says Paul Kidd, a former President of Living positive Victoria and self-identified “stirrer”. Anger, Paul feels, was an appropriate response.

‘Anger is what gets people off their arses in the first place, so it has a motivating role. Second, the expression of anger is an important part of activism. There’s a time to be respectful and polite, and there’s a time to be loud and furious.’ Being a gay man in the 1980s and early 90s was one such time.

‘At one stage,’ Lloyd Grosse recalls, ‘ACON was telling people not to get tested, because there was nothing that they could do to help us. And there was a real fear, at that time, that the government would put us in quarantine or something like that.’

Grosse later did get tested and, despite assurances that he was not high risk, tested positive. With a background in the union movement, activism came naturally to him.

Already a volunteer at AIDS organisations in Sydney, he became involved with PLWHA (NSW) (today known as Positive Life NSW) and then ACT UP.

Similarly Paul Kidd, who was diagnosed in the early 1990s, says that, ‘I’ve always been a politically aware/outspoken person and AIDS was the issue du jour in the gay community. I thought I was going to die and I wanted to make some noise before I did’.

Not everyone had such a background, though. Lyle Chan is a classical composer who found himself in the middle of an emergency.

‘I couldn’t stand by,’ says Chan. ‘My friends were dying. I saw ordinary people turn themselves into activists, so I did the same. The prevailing atmosphere was, “we will do whatever it takes”. I was a musician, but I also had a background in molecular biology – though no one was an expert in AIDS back then,’ he adds.

‘The doctors and researchers had an advantage because of their medical training but still, they knew no more about AIDS than the activists did, because we made a point of being well-informed.’ After coming to Australia from America, he joined ACT UP and also ran a ‘buyers’ club’ at ACON, importing drugs from the US unavailable in Australia. Chan had over 400 clients.

‘The AIDS Council gave it a euphemistic name: the Treatments Access Scheme. The buyers club operated under cover of a provision in federal law that allowed people to import certain medical drugs under certain conditions.

‘The law was designed for drugs manufactured by legitimate drug companies – but I was importing ddC [dideoxycytidine – an early antiretroviral medication] made in underground laboratories in violation of multiple drug patents, while the official drug company and the Australian government took their time working out how to supply it’.

Access to treatments was the big issue for people with HIV in Australia, as it was elsewhere. Access to treatments gave ACT UP its moment in Australia. In Australia, the early trials of AZT – the first antiretroviral drug approved for use by the US Food and Drug Administration – were run on a quota system.

This meant that those who were unable to access the trial were left with nothing, which incensed activists. ‘The process for approving new drugs was very bureaucratic and took no account of the nature of the illness. You could have a drug for dandruff and a drug for cancer and they were both treated in exactly the same way,’ explains Lyle.

Treatment issues also gave the impetus to ACT UP, the direct action group which had proved effective in the US. However, ACT UP was never as popular or widespread in Australia as it was in the US.

This may have been due to the effectiveness of the Australian government’s response to HIV. With a Labor government in power during the 1980s, Australia benefitted from progressive leadership on HIV issues.

‘It was really down to three people,’ says Lloyd Grosse.

‘Neal Blewett was the Health Minister. Bill Whittaker was a great advocate. And Bill Bowtell who was Blewett’s advisor – he was in the right place at the right time.’

It was through their leadership that Australia adopted harm minimisation policies such as needle exchanges, and funded organisations like the AIDS Councils to provide community-based education and services. But these community-based services could themselves become targets of attack from activists.

‘A lot of my anger was directed at the AIDS movement,’ says Lloyd Grosse. ‘They were too caught up with their careers – they would never stick their necks out.’

Lyle Chan says ACT UP deliberately cultivated its image as the ‘lunatic fringe’ of the HIV movement.

‘ACT UP had a love-hate relationship with organisations like ACON,’ he recalls.

‘ACT UP criticised the HIV organisations and could also say and do things that other groups couldn’t. But we also knew that our extreme protests against government officials and drug companies would send them straight into negotiations with ACON (the AIDS Council of NSW) and AFAO (the Australian Federation of AIDS Organisations) to get relief.

These organisations had the same goals as ACT UP but were less antagonistic. ‘The range of players – government, medical professionals, drug companies, NGOs and activist groups – made for a volatile environment, especially when sex and personal relationships were added into the mix.

Where has it gone, this anger? Lyle Chan says he made a conscious decision to leave activism behind, once it became clear that the protease inhibitors, the new generation of antiretroviral drugs, would ‘rescue people from the toilet’.

‘Activism is an attempt to reach some kind of normality,’ he reflects, ‘that you feel is being denied for some reason. Once it became clear, between 1994 and 1996, that we were no longer fighting against a constant backdrop of death, it became possible to imagine a future where every day was not a state of emergency.

‘Some activists continued, working in Asia for instance, where the crisis continued for different social reasons. But I felt my work as an activist was done, and with normality came the responsibility of returning to my true purpose, which was to write music.’

Chan has since written an acclaimed string quartet memoir of his years as an AIDS activist.

Lloyd Grosse is no longer involved in HIV issues, either, though he says he took longer to move on.

‘The war ended,’ he says. ‘People are no longer dying, so in a sense we won. I have returned to my core, which is social justice issues.’

Paul Kidd, who became involved in AIDS activism a little later than the others, says he is no longer angry – at least, not about HIV issues.

‘Anger doesn’t seem right in the current context because the stakes just aren’t as high as they once were: people are not dying.’ Kidd, however, still writes about HIV issues.

‘I think our AIDS organisations have become dreadfully risk-averse,’ he says. ‘Too many of them are more concerned about upsetting their funders than doing what is right to protect people’s rights and lives. I think it’s important to have independent voices calling out and questioning the AIDS establishment and I try to continue doing that in my way’.

All readily acknowledged that while the AIDS crisis is over in Australia, it is still very present in other parts of the world. The International AIDS Conference in Melbourne will see some of the world’s most inspiring AIDS activists in Australia.

Paul Kidd is hopeful that the conference will re-invigorate Australian activists. ‘I think the AIDS conference will be an energising force for HIV activism in Australia,’ he says.

‘I hope it will generate some anger and some willingness to challenge the status quo. It will also help local people see where they fit in the global picture, and maybe contextualise the local challenges and local complacencies in terms of a broader picture.’

Dr Abigail Groves is a freelance writer and a former Policy Analyst at AFAO.