Living in death's shadow: personal stories of the AIDS epidemic

Inner-city Sydney was the epicentre of gay life in the southern hemisphere in the 1970s and early 1980s, as gay men moved from across Australasia to find freedom in the city’s vibrant community networks. But when HIV and AIDS hit, they grieved, suffered, and survived in ways that have often been left out of the historical record, until now.

HIV Survivors in Sydney, Memories of the Epidemic (Palgrave MacMillan, 2019) a new book by University of Auckland historian Dr Cheryl Ware, looks at the intimate lives and memories of HIV-positive gay men in Sydney, focusing on the critical years between 1982 and 1996, when HIV went from being a terrifying unidentified disease to a chronic condition that could be managed with antiretroviral medication.

Using oral histories and archival research, Dr Ware explores how HIV-positive gay men navigated issues like disclosure, health, sex, grief, death and survival, how they dealt with the virus both within and outside of support networks and how they remember these experiences nearly three decades later.

Her interest in the field started with the personal experience of having a family friend whose partner died as a result of HIV in 1999; she later interviewed him for the book in 2010.

“It brought up a lot of conversations about having to deal with the body and the rituals around death, and how many men’s partners and friends were not welcome among families at conventional funerals, so they had to create their own rituals,” she says.

For her book, Dr Ware conducted interviews with 25 gay men who were diagnosed with HIV before the introduction of highly active antiretroviral therapy (HAART) in 1996. She says all the men who participated in her study were diagnosed when it was considered a death sentence.

“They had all witnessed others’ health deteriorate and many had internalised ideas that they would succumb to the same severe physical effects of HIV and AIDS-related conditions that they had seen countless others endure.”

Between 1982 and 1996, over 16,000 Australians were diagnosed with HIV and about 80 percent were gay men.

“Several of the issues they described, especially regarding participating in trials for various antiretroviral medications and planning their own funerals, were strongly influenced by what many perceived as the reality that they would die untimely and protracted deaths,” she says.

A key focus of the book is the way in which the threat of the virus galvanised gay activists to become part of the response to the epidemic, as they mobilised to provide practical, emotional and economic support.

“They established a proactive and effective system of peer-based preventative education that some historians have labelled one of the best in the world,” says Dr Ware. “Such histories are incredibly valuable as they pay due respect to the scores of activists who dedicated themselves to establishing an exceptional response to a devastating situation.”

She says the huge stigma associated with the illness is also a common theme.

“Several of the men in the study challenged the stigma by appearing in the media as the ‘face of HIV,’ lobbied doctors to collaborate with patients under a ‘consult, don’t prescribe’ policy, and transformed Australia’s drug approval process to improve access to potentially lifesaving medication.”

Dr Ware says the scale and influence of existing histories that trace activists’ public achievements appear to have helped some participants make sense of the tragedy. However other interviewees weren't involved in activism and felt disconnected from Sydney’s gay community.

“These men did not always have access to support networks, yet many struggled to articulate their memories of isolation and exclusion. They expressed particular difficulty talking about times when highly publicised HIV-related discrimination and vilification, coupled with a lack of support, meant they felt compelled to conceal their positive status.”

By emphasising the value of their individual accounts, Dr Ware believes the book offers these men a unique forum to narrate their life stories in ways that both aligns with, and departs from, existing knowledge of how HIV and AIDS impacted Sydney’s gay community.

The book is available online.