HIV Activism as Disability Activism: An Intersectional Approach

Here, historian Jaime S.K. Starr argues the case for HIV activism as an example of both LGBTQIA+ and disability rights activism

 

HIV positive people in the UK during the 1980s-90s engaged in radical disability activism, campaigning for dignity in their lives and deaths. HIV activism is not often recognised as disability rights activism. It is more commonly understood as LGBTQIA+ activism, rather than both. However, under the UK’s legislative framework, HIV is classed as a disability, making the epidemic a mass disabling event, especially before anti-retroviral medicines became accessible (in the global North) in the mid-1990s.

HIV activism shares similarities with other disability activism: for example, as a result of state neglect, HIV positive people were forced to become advocates for their community’s needs. This involved educating other HIV positive people about care options, new medical research, how to access statutory services, and correcting misinformation about transmission risks and bogus cures. HIV activists used direct action including die-ins* to pressure governments to fund treatment and independent living resources for HIV positive people. This happened alongside building community mutual aid networks which disability rights activist Lorree Erickson called ‘care collectives’.
*A die-in is a form of protest where activists simulate being dead to draw public attention to the fatal impact an issue is having – in this case, governments not funding HIV care.

Like other disabled activists, HIV-positive people protested state policies that attempted to institutionalise institutionalise their community. The 1985 Public Health Control of Diseases Act empowered local authorities in the UK to forcibly hospitalise HIV positive people deemed a threat to public safety. This legislation was only used once, to forcibly detain a 29-year-old HIV-positive man in Monsall Hospital, Manchester. Writer, Russell T. Davis recalls an “activist uprising” in response, and the detention order was withdrawn ten days later. This sort of activity paralleled the deinstitutionalization movement being fought by other disabled communities at the same time, which suggests that HIV activism should be considered a form of disability activism.

 

John, a man with AIDS, lies on a hospital bed with his partner, while his parents sit on chairs either side of the bed. Personal objects and clothing are displayed around the room.
John spends time with his dedicated parents and devoted partner. Taken in a hospital AIDS ward, London, 1993.

 

While forcible hospitalisation was a stain on the relationship between the NHS and HIV-positive people, HIV activism within hospitals helped to develop NHS practices still used today. AIDS wards, like London Middlesex Hospital’s Broderip and Charles Bell wards were intentionally hidden within the hospital to protect patients and staff from stigma. The ward was uniquely homelike compared with other hospital departments, which helped to give a sense of calm amidst a wider social climate of fear. Lighting was subdued, duvets replaced hospital sheets, personal keepsakes were on display, patients’ blood relatives and chosen family could stay overnight, and visitors could bring patients pets, outside food, drink, and even alcohol. When the Terrence Higgins Trust published photographs of ward life in Positive Lives in 1992, it marvelled that “Such informal images of life in a hospital ward would not have been possible even a few years ago.”

Other offerings included alternative complimentary therapies such as massage and aromatherapy. This relaxed holistic environment was an early iteration of compassionate palliative care, which is now common in end-of-life hospital care. The Broderip and Bell wards were integral to developing holistic end-of-life care in the NHS, pioneering the development of the now commonly used Advanced Care Directive or ‘living will’.

 

John, a man dying with AIDS, lies on a hospital bed with his partner, both dressed in t-shirts and jeans. A nurse walks by in the corridor. Greeting cards are pinned on the wall behind the bed.
For John, his partner, parents and friends, the ward became almost a home. Photograph taken in a dedicated AIDS ward, London, 1993.

 

In the early 2000s as medication improved survival rates and lifespans for HIV-positive people, all UK AIDS wards closed. High patient mortality rates, coupled with grief and trauma among surviving patients, staff, and bereaved families means there are limited firsthand histories of ward life. AIDS wards and HIV social centres were pioneering activist hubs advocating for holistic whole person care, independent living support, and compassionate, dignified treatment; battles fought concurrently by many other UK disabled communities. The impact of HIV activist successes in reshaping NHS palliative care cannot be understated and, I argue, these stories must be considered together as both disabled and LGBTQIA+ history.

 

Further resources:

A note on the evocative photographs used in this article – these are from Gideon Mendel’s collection ‘The Ward’. In 1993, Mendel spent time in the Broderip and Charles Bell Wards, dedicated AIDS wards in London’s Middlesex Hospital. Mendel observed the patients, the care they received from their families and hospital staff, and their medical treatment. John, the patient depicted above, died soon after these photographs were taken. You can read more about Mendel’s project on his website: The Ward – Gideon Mendel.

 

Articles

  • Russell Davies, ‘I looked away for years. Finally, I have put Aids at the centre of a drama’, The Guardian, 3 January 2021, https://www.theguardian.com/tv-and-radio/2021/jan/03/russell-t-davies-i-looked-away-for-years-finally-i-have-put-aids-at-the-centre-of-a-drama.

Books:

  • Gideon Mendel, The Ward (2017). This work captures Mendel’s original 1992 photo project and also records oral histories from some of the medical staff.
  • Mattilda Bernstein Sycamore (ed.), Between Certain Death and a Possible Future: Queer Writing on Growing up with the AIDS Crisis (2021). This work is a global archive of first person essays exploring the impact HIV had on queer lives.

Films:

 

Jaime S.K. Starr is a museum practitioner and oral historian, specialising in queer and disabled modern histories of the UK and Ireland. They currently work at People’s History Museum (Manchester), freelance as an inclusive histories consultant across the heritage sector, and teach workshops on queer histories. You can find their published articles here: linktr.ee/jskstarr.