Book review Through Our Eyes: Thirty years of people living with HIV responding to the HIV and AIDS epidemics in Australia

Book review Through Our Eyes: Thirty years of people living with HIV responding to the HIV and AIDS epidemics in Australia

HIV Australia | Vol. 13 No. 2 | July 2015

Edited by Dr John Rule.

Through Our Eyes: Thirty years of people living with HIV responding to the HIV and AIDS epidemics in Australia is an anthology which spans the extensive history of HIV in Australia.

Through Our Eyes: Thirty years of people living with HIV responding to the HIV and AIDS epidemics in Australia

Edited by Dr John Rule.

Published by National Association of People Living With HIV Australia (NAPWHA).


Through Our Eyes: Thirty years of people living with HIV responding to the HIV and AIDS epidemics in Australia is an anthology which spans the extensive history of HIV in Australia.

The book – edited by academic and long-time NAPWHA associate, John Rule – collects first-person narratives and reflections on HIV/AIDS activism in Australia from the early ’80s to today.

This book features a diverse group of contributors, ranging from HIV-positive people, gay men, sex workers, injecting drug users, Aboriginal and Torres Strait Islanders, clinicians, and government bureaucrats (of course, the identities of many contributors overlap).

Here, I will focus on a just a few of the many highlights contained within this impressive collection.

The book opens with the voices of those involved from the start, when the ‘AIDS crisis’ was first unfolding in Australia.

David Menadue describes a defining moment for Australia’s HIV movement, when a large group of people came out publicly for the first time as HIV-positive during the third national HIV conference in Hobart in 1988. This laid the groundwork for a more assertive public PLHIV voice going forward.

Ross Duffin recollects the early years of AIDS in Australia with palpable urgency and energy.

‘I sat there dumbfounded, thinking it was the end of the world as we knew it’ (p. 23).

He observes the parallel epidemics which accompanied the emergence of HIV, speaking of the ‘epidemic of media sensationalism and bad report’, and the ‘epidemic of highly inappropriate laws’ (p. 24).

This struck a chord with me, as these remain issues that still persist to this day.

Next we move to the 1990s. Bill O’Loughlin details the crucial role played by gay activists in setting priorities which were to underpin the policy framework for the AIDS response – both for the gay community and the wider Australian community.

He movingly expresses the wicked conundrum that ‘In the act of loving another man, I could have killed him’ (p. 43).

Paul van Reyk describes the coming together of activists from the gay, sex work and drug using communities – a collaboration which first began with advocacy efforts to reform laws criminalising homosexuality and sex work during the 1970s.

He also identifies less well known organisational alliances, such as those between ACON and ACT UP, who tag-teamed as ‘good cop, bad cop’ in seeking to get speedier access to treatments under Australia’s then glacial approval timelines.

Michael Hurley describes the pivotal moment in the mid-90s when highly active antiretroviral therapy (HAART) was first announced during the 1996 Vancouver AIDS Conference.

This represented a ‘return to living’, with a focus on treatment adherence, lipodystrophy and resumption of work.

Our late colleague Alan Brotherton conveys the mixed responses among people with HIV to the new HIV treatments – some people with unbridled enthusiasm, others with scepticism, or even fear – given that a history of negative experiences with drugs that had promised much, but proved to be no silver bullet.

Former NAPWHA Executive Director, Jo Watson, discusses innovative advocacy efforts undertaken by NAPWHA, including supporting HIV-positive people to become key spokespeople (later known as ‘treatment advocates’), and the treatment roadshows which toured urban and rural centres.

Katherine Leane provides a moving account about joining the PLWHA (SA) Positive Speakers Bureau. She describes it as a place where she was able to be accepted for the first as time as a woman and mother living with HIV, and a person who injected drugs.

Cameron Cox from Scarlet Alliance, Australian Sex Worker Assocation, highlights the challenges inherent in a criminalised environment, which HIV-positive sex workers experience to this day.

He says that while there have been welcome improvements regarding stigma faced by HIV-positive people as a whole, HIV-positive sex workers still feel like they’re at the beginning of the epidemic.

John Rule reflects on the role of candlelight memorials as a type of ritual of remembrance, similar to collective funeral rites.

‘When we attend an AIDS candlelight rally, we are commemorating that past, those lost lives and lost opportunities. We are mourning, memorialising and remembering, and this is good work we are doing … This memorialising is, I think, sustaining of future for others’ (p. 160).

Many narratives in the anthology emphasise the key role that NAPWHA and its member organisations have played over the years, alongside other key events fleshed out through the broad diversity of individuals who were asked to contribute to this collection.

It would have been interesting to also read the perspectives of activists such as Don Baxter, harm reduction advocate Alex Wodak, and organisations representing the other affected communities such as Australian Injecting & Illicit Drug Users League (AIVL) and the Anwernekenhe HIV Alliance (although a contribution from PATSIN highlights clearly some of the issues faced by HIV-positive Aboriginal and Torres Strait Islander people).

That said, an anthology of this nature could never be expected to cover everything.

What is particularly valuable are the eyewitness accounts about how things evolved and changed.

This collection is a timely reminder that Australia owes a huge debt to the work and legacy of early HIV activists, many of whom are no longer with us. This, in particular, makes the book a very important read.


Michael Frommer is Policy Analyst at the Australian Federation of AIDS Organisations (AFAO).