Care, crisis and coalition: imagining antiprophylactic citizenship through AIDS hospice activism

Abstract

Using crip theory, specifically Barounis’ formulation of antiprophylactic citizenship, Piepzna-Samarasinha’s conceptualisation of care work, and Shotwell’s calls against purity, this paper analyses the making of the film HIV in the Rust Belt during the COVID-19 crisis. HIV in the Rust Belt (directed by Holly Hey) documents some of the experiences of local HIV survivors. During the course of filming, however, a story emerged about the importance of an AIDS facility, David’s House Compassion, which had served as a hospice and a resource centre between 1988 to 2003. When COVID-19 arrived in the USA, we were mid-way through filming. Doing this work during the COVID-19 pandemic opened up a host of questions about the porousness of bodies as well as the slippage of time and stigma between the two pandemics. As we continued filming, we were made more aware that the story of David’s House Compassion could be just as much as story of COVID-19, representative of antiprophylactic citizenship, an idea of belonging that comes from an openness and vulnerability that only sickness can offer.

Keywords:

• Crip
• citizenship
• care
• coalition
• HIV hospice
• contagion
• critical disability studies

Acknowledgements

Thanks go to collaborators on this film project: Holly Hey, Director; Lee Fearnside, Co-Producer; Sue Carter, Co-Producer; Richard Meeker, Executive Producer; Sara Mouch, Ward M. Canaday Center Archivist; Joan Duggan, Chief of Infectious Diseases, University of Toledo Medical Center. Most importantly, thanks also go to the people of Toledo who dreamed up, built, served and cared for the community of David’s House Compassion.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes

1 For more on the economic decline in the US rust belt, see: Hackworth (2019); Neumann (2016).

2 Coincidentally, the Stranahan family has a large philanthropy organisation, The Stranahan Foundation, that provides grants to local organisations like David’s House Compassion, who received a small grant in 1998.

3 One area hospital became the first defendant in the newly passed American Disabilities Act case for hospital discrimination against someone with AIDS. After denying Fred Charon care because of his AIDS diagnosis, the American Civil Liberties Union tried the case and won. Unfortunately, Charon died before witnessing this historic victory against AIDS discrimination. See: Charon v. Memorial Hospital later HOWE V. HULL 873 F. SUPP. 70 (1994).

https://www.acluohio.org/archives/cases/howe-v-hull. Accessed 30 September 2020.

4 Disability Justice is a term that coined by “Black, brown queer and trans members of the Disability Justice Collective, founded in 2005 by Patty Berne, Mia Mingus, Leroy Moore, Eli Clare and Sebastian Margaret” (Piepzna-Samarasinha 2018, 15).

5 Disability Rights can be understood as a framework for achieving government support and recognition for individuals and has been critiqued by many disability scholars of colour as lacking an intersectional understanding of oppression (Piepzna-Samarasinha 2018, 15).

Additional information

Funding

Thanks go to the University of Toledo Office for Research and Sponsored Programs for providing the project with an Interdisciplinary Research Initiation Award and to the Ann Wayson Locher Memorial Fund for HIV Care.