HIV Survivors in Sydney

Memories of the Epidemic

Cheryl Ware

• Publisher: Palgrave Macmillan
• Year: 2019
• Print ISBN:
  9783030051013
• eBook ISBN:
  9783030051020
• Topic: History
• Subtopic: Australian & Oceanian History
• Index: History

Inner-city Sydney was the epicenter of gay life in the Southern hemisphere in the 1970s and early 1980s. Gay men moved from across Australasia to find liberation in the city's vibrant community networks; and when HIV and AIDS devastated those networks, they grieved, suffered, and survived in ways that have often been left out of the historical record. This book excavates 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, Cheryl Ware offers a sensitive, moving exploration of how HIV-positive gay men navigated issues around disclosure, health, sex, grief, death, and survival. HIV Survivors in Sydney reveals how gay men dealt with the virus both within and outside of support networks, and how they remember these experiences nearly three decades later.  

© The Author(s) 2019

Cheryl WareHIV Survivors in SydneyPalgrave Studies in Oral Historyhttps://doi.org/10.1007/978-3-030-05102-0_1

Begin Abstract

1. Our Lives Are Going to Change

Cheryl Ware¹

(1)

University of Auckland, Auckland, New Zealand

Cheryl Ware

Email: [email protected]

End Abstract

On the afternoon of 27 June 1982, Ross Duffin waited on the steps of San Francisco City Hall to conduct the interview that would change his life. The twenty-six-year-old Australian had just submitted his doctoral thesis in statistics at the Australian National University in Canberra and was on an overseas trip across North America. The San Francisco Pride Parade, held earlier that day, was one of his final stops. While he was there, however, he became acutely aware of the impact the “mysterious gay cancer” was having on gay male populations. Store windows on Castro Street displayed posters warning passers-by about Kaposi’s sarcoma. The ominous purple blotches on an individual’s skin were some of the first identifiable signs of the otherwise “silent disease” that was sweeping through the community. Determined to learn more, Ross scheduled an interview with one of the doctors from the Bay Area Physicians for Human Rights , an organisation comprised of gay and lesbian doctors. At that point, the term AIDS was yet to be used. The virus now known as HIV was yet to be identified. One thing was certain: “what they were putting together was a picture of an infectious disease that was deadly.” Ross realised, “our lives are going to change, completely and utterly change. And I have some skills in relation to some of this stuff, and I want to be involved. So, I’m going to move to Sydney!” ¹ Five months later, Professor Ronald Penny diagnosed Australia’s first case of AIDS at St. Vincent’s Hospital in Darlinghurst, Sydney. Australia’s HIV and AIDS epidemic had begun.

Ross’ decision to move to Sydney highlights important parallels between San Francisco and Sydney. Both cities had thriving gay communities by the early-1980s and initially became two of the main epicentres of the global epidemic. To date, no other city across Australasia has reported as many HIV or AIDS diagnoses or related deaths as Sydney. This was particularly devastating as the gay liberation movements of the 1970s and early-1980s solidified Sydney’s international reputation as a place where gay men could live, love, and socialise openly. Many gay men had moved to inner city Sydney across the previous two decades in pursuit of the social freedom and access to a vibrant gay community that the city offered. Yet without warning, they found themselves under attack by the deadly virus that annihilated gay male populations around the world. This virus destroyed relationships, tested friendships, and left many fighting for their lives.

This book explores how HIV and AIDS impacted gay men’s intimate lives across the 1980s and 1990s. It features oral history interviews conducted with twenty-five gay men who were diagnosed with HIV before the introduction of highly active antiretroviral therapy, or HAART, in 1996. This medication limited the replication of the virus in one’s body. It transformed HIV from a terminal illness to a chronic condition that could be managed by taking antiretroviral medication . All the men who participated in this study were diagnosed with HIV 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. Several of the issues they described, especially regarding participating in trials for various antiretroviral medications and planning their funerals, were strongly influenced by what many perceived as the reality that they would die untimely and protracted deaths.

The actions of people like Ross who moved to Sydney to become involved in the national response to HIV and AIDS remains one of the legacies of the epidemic. The ways in which the threat of the virus galvanised gay activists have been memorialised in numerous international and Australian theatre productions, films, documentaries , and public exhibitions . Historians place similar emphasis on those who drew on the political and social networks established during the gay liberation movements of the previous decade and mobilised to provide emotional, practical, and economic support for others afflicted by the virus. ² This included the establishment of AIDS Action Committees in 1983, later named AIDS Councils , in each Australian state and territory. ³ Australian activists primarily collaborated with government officials, namely Health Minister Neal Blewett and his advisor Bill Bowtell or, through vocal groups such as the AIDS Coalition to Unleash Power (ACT UP), lobbied against the government. They established a proactive and effective system of peer-based preventative education that some historians have labelled as one of the best in the world. ⁴ Such histories are incredibly valuable. They pay due respect to the scores of activists who dedicated themselves to establishing an exceptional response to a devastating situation. These histories also occupied a prominent place in some narrators’ memories of the epidemic. Several of the men in this study drew on such depictions to convey how they challenged 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. The scale and influence of existing histories that trace activists’ public achievements appear to have helped some narrators to make sense of events that were, and that continue to be, emotionally devastating. They recalled mobilising and persevering in the face of a virus that threatened their lives.

Such histories, however, predominantly focus on a select group of activists’ public responses to HIV and AIDS. They do not always account for the impact the virus had on gay men’s intimate lives. The lives and memories of HIV-positive men who were not involved in activism and those who felt disconnected from Sydney’s gay community are particularly underrepresented in such discussions. These men did not always have access to support networks. Yet many struggled to articulate their memories of isolation and exclusion amidst existing understandings that Sydney’s gay community mobilised across this period. 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. Narrators’ struggles to have sex after they were diagnosed with HIV, and instances when their health had depleted and they were not able to achieve an active role in their healthcare also emerged as the interviews delved further into their private memories to uncover important, yet perhaps previously unspoken, aspects of their pasts.

The interviews that feature in this book explicitly aimed to uncover narrators’ personal memories. By emphasising the value of their individual accounts, they offered these men a unique forum to narrate their life stories in ways that both aligned with and departed from existing understandings of how HIV and AIDS impacted Sydney’s gay community. The oral testimonies reveal, for the first time, how HIV-positive gay men dealt with the virus both within and outside of existing support networks and organisations. They add further depth to understandings of how these men’s private lives were affected by the epidemic and how they remember and reflect on this period nearly three decades later. Narrators’ personal memories and private reflections reveal how their lives were forever changed by a virus that threatened their survival, damaged their bodies, and decimated their peer groups.

Oral History as a Source

Since oral history emerged as a professional discipline in the 1960s, it has proven to be instrumental for researchers interested in the intimate lives of individuals and groups whose perspectives were omitted from the written historical record . ⁵ Yet the value of oral history extends beyond its ability to retrieve previously undocumented memories of the past through the narrators’ voices. Rather, oral historians analyse interviews to uncover the hidden messages that are inherent in oral testimony. ⁶ To borrow from Lynn Abrams, the main questions that informed my analysis of the interviews centred on “not just what is said, but also how it is said, why it is said and what it means.” ⁷

The use of oral history has also garnered significant criticism. ⁸ Critics claimed that oral history exposes the inaccuracies and inconsistencies in individuals’ memories over time. They therefore deemed oral testimony to be an unreliable historical source . Yet it is the individual subjectivity inherent in oral testimony that often interests oral historians, and that is the focus of this book. In response to scepticism about the reliability of oral history, Alessandro Portelli notably argued that oral history has “a different credibility” to that of written sources. He explained that the value of oral testimony “may lie not in its adherence to fact, but rather in its departure from it, as imagination, symbolism, and desire emerge.” ⁹ While individuals’ recollections may depart from and at times contradict existing evidence, this does not render the use of oral history as unreliable. Rather, narrators’ memories and personal accounts reveal what specific events meant to those involved, why people acted a certain way, and how they reflect on their pasts. ¹⁰ Oral historians therefore urge researchers to treat all autobiography as true and to “discover in which sense, where, for which purpose.” ¹¹

Theoretical discussions about composure informed my analysis of the interviews . Emphasising the significance of composure enables this book to explore beyond the content of the interviews. It places particular value on considering how interviewees both remember past events and why they choose to relate specific stories in certain ways. There are two distinct elements to composure. Firstly, researchers who were involved with Britain’s Popular Memory Group at the Centre for Contemporary Cultural Studies, University of Birmingham, argue that individuals’ memories of the past are a product of both public representations and private influences. ¹² Public representations include the mass media and commemorations. Alternatively, private or particular publics refer to the more intimate groups with whom narrators identify. Within these cohorts, “Certain representations achieve centrality and luxuriate grandly; others are marginalized or excluded or reworked.” ¹³

Individuals’ desires for recognition is a major factor to consider when exploring how narrators compose memories and stories about their pasts. Oral historians including Alistair Thomson and Graham Dawson place recognition at the centre of composure, whereby individuals seek affirmation that their version of the past resonates with the experiences of others. ¹⁴ Narrators therefore often compose stories in ways that thei...

Table of contents

• Cover
• Front Matter
• 1. Our Lives Are Going to Change
• 2. The Gay Capital of the Southern Hemisphere
• 3. The Face of HIV
• 4. “The Disease of a Thousand Rehearsals”
• 5. Living by the Code of the Condom
• 6. Patient Stories
• 7. The Heroes of the Epidemic
• 8. Coping with Death
• 9. Life as Lazarus, 1996
• 10. Bearing Witness to the Epidemic
• 11. Conclusion
• Back Matter