Bearing Witness to the HIV and AIDS Epidemic

Cheryl Ware shares some insights from her Ph.D. research about using oral history to investigate the experiences of HIV+ gay men from Sydney. 

The AIDS Memorial Quilt, Washington, D.C., 1988. Image via Wikimedia Commons.
The AIDS Memorial Quilt, Washington, D.C., 1988. Image via Wikimedia Commons.

In recent years, there has been a growing interest in public depictions of the HIV and AIDS epidemic of the 1980s and 1990s, especially in Australia and the United States. Several documentaries, films, exhibitions, and theatrical performances capture its immense historical impact on individuals and their communities. These creative outputs pay tribute to those who proactively lobbied governments for faster access to anti-retroviral medication, educated their peers about safe-sex measures, and nursed partners, friends, and acquaintances through the final moments of their lives.

In 2014, public interest in HIV and AIDS was made clear with the commercially successful film, Dallas Buyer’s Club (2013), being nominated in the 2014 Academy Awards. Two months later, the release of The Normal Heart (2014), a filmic adaptation of activist Larry Kramer’s renowned 1985 play, also brought international attention to the experiences of HIV-positive people during the 1980s.

The year 2014 also saw revived interest in the HIV and AIDS epidemic in Australia, especially with the Twentieth International AIDS Conference being held in Melbourne for the first time. Several events – including two public art exhibitions, David McDiarmid: When This You See Remember Me and Transmissions: Archiving HIV/AIDS – Melbourne 1979 – 2014, and the world premiere of the documentary Transmission: The Journey from AIDS to HIV – were held to coincide with the conference. That same year, The Death of Kings, a verbatim reading about HIV and AIDS in Sydney, was performed in Sydney, Bathurst, and Melbourne. The experiences charted in the 1995 memoir of Australian writer, actor and activist Timothy Conigrave were then shared in Holding the Man (2015).

Holding the manWhile the growth in public depictions of HIV and AIDS has brought the epidemic into contemporary mainstream discussions, the impact of these representations on people living with the virus has received less consideration. In 2014, I conducted interviews with twenty-five gay men who were diagnosed with HIV when it was considered a terminal condition. The interviews revealed that few narrators found comfort in the burgeoning public interest in HIV and AIDS. As survivors of the epidemic living in the contemporary era, they instead felt that their experiences have been forgotten.

This may be because the year 2014 also marked eighteen years since highly active antiretroviral therapy (HAART) was introduced in Australia. HAART delayed the progression from HIV to AIDS, and transformed HIV from a terminal disease to a chronic condition that could be managed by taking antiretroviral medication. In the interim, deaths from HIV and AIDS-related conditions plummeted. People started living longer, healthier lives. For many, the epidemic had been “over” for nearly two decades.

Yet, it has never been over for those who survived. These individuals lived through an event so traumatic and incomprehensible that some could only compare it to surviving a war. They argued that the broader community, however, treats HIV and AIDS as issues from the past without considering the impact on those who are still dealing with the trauma of what they experienced. Some of these men therefore drew on the interviews to achieve validation that their experiences were significant, meaningful and, above all, worth remembering.

The value narrators placed on having their experiences affirmed by others cannot be understated. Stephen Allkins’ testimony was a particularly compelling reminder of the importance of bearing witness to the HIV and AIDS epidemic. Stephen participated in an interview for the Australian documentary, Rampant: How a City Stopped a Plague (2007). He identified Rampant as the start of his emotional healing from the trauma of the preceding years, and explained that viewing the documentary “just [brought] back this flood of what – like, everything I thought but you feel like you’re making it up ’cause you see a whole society of people that just don’t have that in them.” Stephen was one of the exceptions, and few men had been asked to speak about the epidemic on such a public platform.

Elton John, World Aids Day; Substance, Circular Quay, Sydney (2011). Photograph by Eva Rinaldi Celebrity and Live Music Photographer. Image via Wikimedia Commons.
Elton John, World Aids Day 2011, Circular Quay, Sydney. Photograph by Eva Rinaldi. Image via Wikimedia Commons.

Most of the men I interviewed were not involved in activism, and did not have access to the public audience that Stephen described. John Brian was particularly frustrated with his lack of an engaged audience. He explained, “you’re the first person that’s ever been vaguely inquisitive about my experiences.” While other interviewees explained that they wanted to contribute to documenting a history of HIV and AIDS, John was the sole exception. He suggested that he made contact for the personal benefit of being able to share his memories with someone who was willing to listen.

John’s prevailing issues with HIV fuelled his frustration at others’ apparent indifference towards his experiences with the virus. He had endured grief, financial distress, and the damaging physical and psychological effects of taking anti-retroviral medication. John was particularly concerned about sex. While he had many sexual partners throughout his youth, his sex drive had depleted in recent years. He understood these experiences as gendered, and explained “a seriously hard thing for a man, any man I reckon, is acknowledging, or accepting, or recognising that your sex life is over […] You know, when does that moment in time come? And what precipitates it? And you can’t get any help to even discuss it.” John’s final statement reveals how the interview became a rare forum to articulate difficult memories, which he felt he could not discuss with others.

John’s enthusiasm for this study was also a reaction against doctors whom he felt expressed little interest in his physical health or his emotional wellbeing. He reinforced his anger several times throughout the interview, stating doctors were not “the slightest bit interested in how I was managing to still be alive,” and they “couldn’t care less, don’t wanna know.” John’s anger at doctors was likely shaped by his pride in his remarkable story of survival. Although he was diagnosed with HIV in Sydney in 1984, he lived with virus for sixteen years before his health declined in 2000. At that point, he had succumbed to a host of other illnesses including Giardia and Microsporidia, and he started to take antiretroviral medication. Nevertheless, having his personal travails overlooked suggested that the struggles he endured to survive with HIV were no longer considered relevant.

International AIDS Conference, Melbourne, 2014. Image via Wikimedia Commons.
International AIDS Conference, Melbourne, 2014. Image via Wikimedia Commons.

John died in August 2015, thirteen months after the interview. I heard about his death from a member of the HIV Outreach Team, who (with permission from John’s family wanting to “support her thesis work”) showed me the note that John had left behind. When we spoke via email, John’s sister reinforced her support for my study, and her pride in helping to add John’s story to the historical record. She explained “we had always told him that he had defied so much medically during his life and his story was worth using in someone’s research. Naturally we were excited that he had been able to do this.”

In July 2016, the ABC reported that the AIDS epidemic was officially “over” in Australia. This declaration came twenty years (to the exact date) after the clinical success of HAART was announced at the Eleventh International AIDS Conference in 1996. John did not live to see the announcement, but it is unlikely that it would have brought him much comfort. His testimony serves as a striking reminder that the epidemic is by no means “over” for those who were most affected. These individuals’ personal memories and private reflections can guide us towards a deeper understanding of how their lives were forever changed by a virus that decimated their peer groups, damaged their bodies, and left many without resources fighting for their lives.

 

Cheryl WareCheryl Ware completed her Ph.D. at Macquarie University in 2016. Cheryl is particularly interested in oral histories of health and medicine, sexuality, and gender. In 2014, she presented a TEDx Macquarie University talk entitled “Uncovering Hidden Histories: Gay Men’s Memories of the HIV/AIDS Epidemic, 1982-1996.” Currently, Cheryl serves as the secretary of Oral History New South Wales.

Follow Cheryl on Twitter @CherylAnneWare.

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