ustralia’s first AIDSrelated death was in Melbourne in July 1983. Not only has the world changed considerably since then but the shape of activism has changed too. This thirtieth anniversary is an opportunity to look back on the history of HIV activism and consider its future. The people who gathered together in the early and mid1980s were part of a much less connected world. Their information came from overseas contacts, travel and gay publications. From 1982 onwards, overseas sources suggested that gay men were suffering mysterious symptoms of compromised immune systems. Growing numbers of men were being diagnosed with the previously rare form of cancer, Kaposi’s sarcoma, and other devastating opportunistic infections. When HIV first reached Australia, activism was centred on AIDS councils, which formed very quickly. These organisations were not exclusively gay and lesbian but their membership came from this community. The Victorian AIDS Action Committee (now the Victorian AIDS Council) met for the first time at Melbourne’s Laird Hotel in July 1983. Similar AIDS councils were established in Queensland, South Australia, Western Australia, Tasmania, NSW and the ACT between 1983 and 1985. The Australian Federation of AIDS Organisations (AFAO), founded in 1985, served as a national umbrella organisation. These community-based organisations drew heavily from New York and San Francisco models. Individuals from a wide range of backgrounds, including some marginalised groups, joined together to work with bureaucratic structures to formulate a response to HIV in Australia in the 1980s. Many of those dealing with the toll of the epidemic had been poorly treated by both government agencies and medical authorities in the past.
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INVALUABLE VOLUNTEERS The Australian response to HIV in the 1980s has justifiably received much international acclaim. Many of those who remember the early years of the AIDS epidemic reflect on the way that AIDS Councils were staffed by volunteers. In an oral history interview held by the National Library of Australia, academic and writer Dennis Altman
describes the individuals who led these Councils as ‘heroes’. The federal government was largely supportive of these organisations and was prepared to empower individuals to educate others about HIV. During the 1980s and 1990s, office bearers in AIDS Councils, alongside community volunteers including many who were living with HIV, manned telephones and gave talks to organisations such as Lifeline and state and regional health services. Members of the heterosexual community, including some women whose sons had been affected by HIV, also gave time and energy as
COMMUNITY INVOLVEMENT HIV activism in the 1980s focused on very practical concerns. The medical profession was still learning about the virus so the earliest activism in Australia centred on making information about HIV available and supporting those who were directly affected. Many of those who lived through these years describe the difficulties of losing friends and lovers, while attempting to manage their own health and educate others. Despite living through a time many liken to a war in terms of the loss of lives, many HIV activists remember the 1980s as a
generally had a better relationship with the federal government than activists in the United States, tensions became more obvious as the epidemic continued. People who were living with HIV became increasingly concerned that their needs and concerns were not being voiced. NAPWHA’S BEGINNINGS A very significant event for HIV activism occurred with the formation of the National Association of People With HIV Australia. The organisation can trace its origins to the 1988 national AIDS conference in Tasmania, when, during the
activists and government focused on access to HIV medications such as AZT. This medication was initially thought to slow the frequency and severity of AIDSassociated opportunistic infections. In 1990, the tension between AIDS activists and government erupted when protestors interrupted a speech by Federal Health Minister Brian Howe at the National AIDS Conference, demanding that the process of approving experimental HIV medications such as AZT be fasttracked. At that point AZT was given only to people with T-cell counts below 200. This
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REVISITED It can be easy to forget just how difficult it was thirty years ago when HIV first hit Australia. After the initial shock subsided, our anger over inaction rallied us and bureaucracy took notice of the shouting. But what do we do today? Have we become couch potato slacktivists or are we just using new technology to suit the times? Shirleene Robinson investigates volunteers. There are numerous accounts of people across Australia doing what they could to assist, including bringing pots of soup into the headquarters of the Queensland AIDS Committee or spending days and nights caring for and nursing people dying of AIDS-related illnesses. Ken, who was living with HIV in Brisbane in 1985, volunteered with the Queensland AIDS Council in that year. He told The Courier Mail that he was getting valuable support from the organisation, felt he was playing a supportive role to others and was, in turn, receiving friendship and feeling less isolated.
time when a community pulled together. David Menadue explains that ‘the desperation of the times (the eighties) meant more hands were needed on deck to do things that governments had often not funded HIV organisations to do. ‘HIV organisations depended on volunteer workforces and community involvement was high. People wanted to help and that included rattling the cages of government when they weren’t listening to the needs of people who were dying or providing resources to communities-at-risk to try to stop new infections.’ Although Australian activists
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closing plenary, 20 activists took to the stage and demanded that HIV positive people be represented in the AIDS response. It was the first time in Australia that a group of people stood up and self-identified as HIV positive. This action led to the establishment of the National People Living with AIDS Coalition (NPLWAC) – an advocacy organisation with the primary mission of increasing positive representation on a national level and which, in the early 1990s, was renamed NAPWA (now NAPWHA). One of the major points of contention between Australian
contrasted with the US and Canada, where people living with HIV had access to the medication before they became sick. In Australia, people living with HIV were particularly concerned that access to medication was proving difficult and that HIV positive people were not being given more agency in the process of medical treatment. ACT UP The American activist group ACT UP, which had been formed by Larry Kramer in 1987, addressed the concerns of many Australian activists and particularly those of people living with HIV. On