From Australia’s first recorded AIDS-related death in 1983 to the introduction of effective treatment in 1996, nurses and the unions representing them, played an extraordinary role in responding to the virus. A new book shines a spotlight on their stories for the first time.
In the process of researching and writing Critical Care, I spoke with 30 nurses across Australia who worked in a variety of clinical settings, including hospital wards, community nursing and outpatient clinics at the height of the crisis. Many described the extraordinary care, compassion and solidarity they witnessed and experienced in the context of HIV and AIDS care.
They gave physical and emotional comfort when medicine could offer only limited treatment. They negotiated homophobia and complex family dynamics and defended the rights of their patients. HIV is a disease embroiled in the politics of blame, prejudice and sexual moralism, and this was also reflected in the stories and experiences of nurses. Many of those who spoke with me shared painful memories of the homophobia and prejudice they had experienced or witnessed during their time in HIV and AIDS care.
More than health care
Many of my subjects adapted to the challenges associated with HIV and AIDS care, providing physical and psychosocial care that was often well outside the boundaries of conventional medicine.
For example, Marie who worked on the immunology ward at Royal Perth Hospital between 1990 and 1992 told me she nursed many men with AIDS who were without family and friends to keep them company in their final days.
She recalled: “I felt that just by being there … at least there was somebody with them when they died.” Marie told me she provided care that was not always strictly medical but was desperately needed. She shared one story in particular which captured the intimate, psychosocial care nurses provided in devastating circumstances.
“I was with a man who was very, very ill and it was the most beautiful morning. I said to him ‘Oh, it’s going to be a beautiful day’. But I knew in my heart he wasn’t going to see the whole day. So we pushed his bed out onto a little balcony, and I jumped on the bed with him and we watched the sunrise. It was beautiful. That was all those years ago but I’ll never forget that. Even now, it’s making me a little emotional, but it was a beautiful experience to be there and make that difference.”
Shaping public health policy
Nurses were caregivers, but they were also activists both on and off wards. They participated in the formation of AIDS Councils and worked with communities to develop public health campaigns. They advocated for their patients and, through their unions, opposed the efforts of doctors to introduce traditional public health measures such as compulsory testing.
Marilyn Beaumont, the Federal Secretary of the Australian Nursing Federation (ANF) between 1987 and 1995 recalled: “we were dealing with the Australian Medical Association and the College of Surgeons, and their view was that they should tell us what was good for us.”
Nurses however, took an approach based on the idea that health is created by social conditions, not by health professionals. Nurses put this into practice by fighting alongside affected communities for an approach to HIV and AIDS prevention that focussed on community empowerment, the agency of patients and harm minimisation.
Today, in the aftermath of the first waves of Covid-19, there is renewed interest in the political and social questions posed by infectious diseases. There is much to learn from how nurses responded to HIV and AIDS, and their response to the virus that avoided punitive public health measures, focussing on the agency of affected communities instead.
Dr Geraldine Fela is a Postdoctoral Research Fellow in the Department of History and Archaeology at Macquarie University.
Critical Care, Nurses on the Frontline of Australia’s HIV and AIDS Crisis is published by UNSW Press.
