Critical Care. Nurses on the frontline of Australia's AIDS crisis
Oral history interviews … with 33 nurses form the core of this work, and an immediately noticeable strength is the range of nurses Fela interviewed … Oral history, with its unique ability to bring the past into the present in the process of interview, sees Fela’s narrators share the fears, the poignant moments, the woe and anguish – and the laughter … that has sat tightly inside across decades, never forgotten.
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Critical Care. Nurses on the frontline of Australia's AIDS crisis
GERALDINE FELA | 2024
In a Darlinghurst share house on a Sunday night in 1987, I watched Australia’s first national TV campaign advertisement about HIV/AIDS. Set in a 10-pin bowling alley, the scary figure of the Grim Reaper bowled people over to instant annihilation. ‘At first, only gays and IV drug users were being killed by AIDS’, a menacing voiceover proclaimed, ‘but now we know every one of us could be devastated by it’. My housemates and I felt we had been kicked in the guts. The message was clear: AIDS kills, it doesn’t discriminate. Gay men – myself and my housemates – were to be feared by the ‘general population’; we were disease carrying. No more than an hour after the TV ad premiered, I was on the bus to a night shift, to care for those sick with the virus the sensationalist Commonwealth campaign demonised. It’s one of many potent memories from the AIDS epidemic years that have never faded for me.
And so it was with great interest that I started reading Geraldine Fela’s Critical Care. Nurses on the Frontline of Australia’s AIDS Crisis. The book – which is drawn from Fela’s PhD thesis – is arranged into six chapters and an afterword, and it begins with an excellent introduction that offers a solid overview of the trajectory of HIV and its treatment and care in Australia.
Oral history interviews undertaken between 2017 and 2021 with 33 nurses form the core of this work, and an immediately noticeable strength is the range of nurses Fela interviewed. Women and gay men, they worked in large city hospitals, clinics, prisons, in remote communities and on the street with drug users and sex workers. Each of these workplaces had their own specific issues, while differences in social and political climates across and within Australia’s states and territories meant that the treatment landscape could vary enormously.
The impact of nurses and their trade unions in challenging the entrenched norms that shaped health care practice in Australia amidst the brutal public health crisis of the early to mid-HIV years isn’t a story that has been widely discussed nor documented. A health system tightly controlled by the medical establishment – through the prominent Australian Medical Association – was forced to listen to patients and their loved ones, and nurses were central to making that happen. Many of the nurses who worked in HIV during the crisis years were part of the same social communities as the patients they were caring for, and boundaries between the ‘personal and professional’ could blur.
Often young, vocal and informed, gay male and lesbian nurses’ lives had been influenced by the politics of gay liberation, with many female nurses embracing radical and liberal feminism. Framings of the nurse as subservient were being challenged by the early 1980s, and there were significant changes in the leadership of nursing unions at this time. This saw progressive leadership tickets drawn from rank-and-file nurses taking control after fiercely fought battles against mostly older, conservative nursing leaders in several Australian states.
These nurses rejected the ‘Nightingale’ paradigm of the nurse as doctor’s handmaiden and deeply entrenched professional boundaries shifted. Around the same time, nursing education in Australia began to transition from hospital-based, task-focused apprenticeship style training to the university sector. For the first time nursing students were introduced to subjects such as the sociology of disease, patient advocacy and health economics.
Centering people with HIV (and recognising their families, of choice and biology) became central to care, with nurses fighting for patient-focused knowledge and support. These models of care are still with us today and Critical Care puts the formidable work of nurses in the Australian HIV/AIDS story on the record with sensitivity and pathos.
In an environment where there were so many gaps in knowledge and understanding of the HIV virus (and of gay men’s lives and the lives of injecting drug users) the ways in which knowledge was shared shifted. Sexual moralism, blame, fear, medical and institutional hierarchy and prejudice were confronted head-on. On a health policy level organisations born from the ground-up across the country – such as the AIDS Council of New South Wales and the NT Aids Council – worked with government and demanded a role for community in tackling the developing crisis. At the same time, activist organisations such as ACT-Up were also calling on drug companies, local health services and service organisations to listen to the most vulnerable – those living with the virus – through militant political actions.
Along with nurses, these forces changed people with HIV’s lives and irrevocably shifted the prevention, care and treatment landscape in Australia. These responses to HIV became known globally as the much lauded ‘Australian model’. Not always perfect, this was nevertheless health care reform whose most fundamental quality was a rejection of sick people as helpless victims.
There is so much that is tacit, so many intimate moments working with patients that are left unshared, in nurses’ working lives. Oral history – with its unique ability to bring the past into the present in the process of interview sees Fela’s narrators share the fears, the poignant moments, the woe and anguish – and the laughter (yes, of course there was some) – that has sat tightly inside across decades, never forgotten.
In Far North Queensland, First Nations nurse Aunty Gracelyn used sports field locker rooms and barbecues to talk with mob about being safe, remembering:
we didn’t go to all these places to say, this is what you should do … we talked about a bottom-up approach; this was our problem and we needed to deal with it. So it wasn’t like a real top-down government approach … doctors and high-powered nurses and epidemiologists coming in … we always turned it into fun, barbecues, singing and telling funny stories before getting into the serious part.
For some gay men working in HIV their commitment to community didn’t stop the shame and fear that swirled relentlessly around us in those years. Brad, who nursed at Sydney’s St Vincent’s Hospital Ward 17, recalls being slightly built and struggling with his body image. ‘I was obsessed about gaining weight, obsessed about trying to put on some weight, so that I didn’t look like I worked in HIV and had AIDS’, he recalled, adding that decades later he still carries some of that anxiety with him.
Not all this care was strictly ‘medical’, but it was most certainly important. Working nights at Royal Perth Hospital, Marie hasn’t forgotten a young gay man who, like many on the ward, was isolated and without family or friends to offer emotional support. She recalled one particular morning:
I was with this man, he was very, very ill… And I said, “Oh, it’s going to be a beautiful day” but I knew in my heart he wasn’t going to see this whole day and he said, “I’d love to see it”. They had these really old French doors on that ward – and we managed to push his bed out onto the little balcony. And I jumped on the bed with him and we watched the sunrise and it was beautiful. And that was all those years ago. And I’ll never forget that…it was a beautiful experience to be there to do that and to make that difference.
Oral history offers the richest means of investigation of the role of nurses in the AIDS crisis because it offers us ‘inside stories’ of those years. This allows narrators to ‘furnish the vocabulary in which to frame the personal past’, as oral historian Penny Summerfield aptly puts it. Fela observes in the book that she felt the nurses she interviewed had a palpable need to acknowledge what they had been part of, noting:
Many of the nurses who shared their testimony with me were, quite rightly, proud of the role they had played in responding to HIV and AIDS. For some, working in HIV and AIDS care transformed their careers, attitudes, and understanding of the world. Others, particularly gay and lesbian nurses expressed a strong desire to contribute to the writing of their community’s and their profession’s history.
Critical Care joins historical work on the ecology of HIV in Australia produced in the last decade that centres the voices of those at the frontline, outside of the medical establishment, such as Cheryl Ware’s 2019 HIV Survivors in Sydney Memories of the Epidemic and Robert Reynolds, Shirleene Robinson and Paul Sendzyuk’s In the Eye of the Storm: Volunteers and Australia’s Response to the HIV/AIDS Crisis, published in 2021.
It’s not by accident these works have appeared some three decades after the height of the crisis years. Cultural theorist Ted Theodore has coined the term ‘Aids Crisis Revisitation’ for the significant cultural production in recent years around the crisis period of the 1980s and early 1990s. The AIDS Crisis Revisitation he argues, followed ‘The Second Silence’, the years immediately following the advent and widespread use of drugs that radically altered the course of HIV and saw a dramatic dive in AIDS-related deaths. Those were the years when we waited to see if the new drugs would work for people living with HIV in the long-term. It was a time also of people moving forward and ‘getting on’, post-crisis, reinventing their lives as the death rate from the virus flattened in Australia; by 2008 Ward 17, the country’s oldest and largest HIV ward at Sydney’s St Vincent’s Hospital, had closed its doors.
My personal background meant this book was a tough read as so much of it was close to home. I would have loved to have seen the inclusion of images, as the visual record of the HIV crisis years is a particularly rich archive that would sit very well alongside oral testimony. That aside, this is a well-crafted, intimate history supported by Fela’s terrific combination of meticulous research and deep insight that honours at every turn the voices of her narrators. Each chapter builds into a complex but coherent narrative, and in centering the voices of those who lived through this extraordinary period, Fela’s interpretation never overpowers. Globally, HIV has killed 40 million and infected 100 million people, statistics that demolish the idea that SARS-Covid 19 was the world’s first major health crisis in 100 years.
Critical Care. Nurses on the frontline of Australia's AIDS crisis is published by UNSW Press.
Reviewer: Dr Bruce Carter, PHA (NSW & ACT)