‘Talk with us, not about us’: PLWA Victoria and VAC/GMHC

Tensions around HIV positive people working together with non-positive people began to present themselves within the PLWA movement, particularly in terms of its close association with the VAC/GMHC. This would manifest itself dramatically at the 1992 National AIDS Conference and later become a key factor in the 1994 VAC/GMHC elections. Despite the achievements of the VAC/GMHC in working to reverse the stigma attached to homosexuality and HIV and advocate for the rights of HIV positive people, there was still a recognition that positive people needed to become more visible and speak out about their experiences. By working with the VAC/GMHC, PLWA Victoria provided positive people with a voice and a say in the decisions that most affected them. Keith Harbour, who took up the role of convenor of PLWA Victoria in 1989 after two years as President of the VAC/GMHC, wrote that the establishment of PLWA Victoria ‘is a source of pride … People living with AIDS are involved in all decisions and program areas within the organisations and this has helped to focus all services on the needs of the users’.47 Harbour was a particularly passionate advocate for the inclusion of positive people in all areas and at all levels of the VAC/GMHC and is remembered for coining the phrase ‘Talk with us, not about us’.48

At a PLWA Victoria meeting held on 28 September 1989 three main objectives were established for the program.49 The first objective was peer support, involving the establishment and facilitation of various support groups for HIV positive people, their partners, friends and families. The second objective was to disseminate accurate, relevant and useful information, via channels such as the newsletter Positive Living, a telephone information line dedicated to enquiries about HIV and AIDS, and organising positive people to speak about the epidemic to groups such as healthcare organisations – an initiative that became known as the Speakers Bureau.

The third objective of PLWA Victoria was advocacy and community outreach, which involved achieving representation for positive people in organisations and on boards and committees that were key players both in managing the epidemic and in providing support to those affected by it. PLWA Victoria also pushed to be recognised in the media. Les Taylor, another early convenor of PLWA Victoria and later Vice President of the VAC/GMHC, was one of the first openly positive people to speak out in the Australian media, appearing on the television program Good Morning Australia in 1987 and advocating for HIV positive people to have access to AZT.50 Just as media interest in HIV reached new levels, PLWA Victoria gave positive people an authoritative voice to speak out and challenge prevailing stereotypes about the virus. At a time when so few HIV positive people were prepared to front the media, or indeed to be open about their positive status even with friends and family, it took great courage and conviction from those who did.

Although the VAC/GMHC was already working in all of the areas in which PLWA Victoria began to operate, leading to some overlap, the important difference was that positive people would themselves be running their own support groups, connecting with their own community and advocating for their own rights and needs. It was recognised that setting up their own programs would be empowering for positive people, and that first-hand experience placed them in the best position to help others diagnosed with the virus and educate those at high risk of HIV infection.


References


Les Taylor and Maureen O Brien

Early convenor of PLWA Victoria and later Vice President of VAC/GMHC, Les Taylor, with GMHC Community Health Nurse, Maureen O’Brien, at the VAC/GMHC Annual General Meeting in 1989.

Leigh Klooger