Twenty-One Questions to Consider When Embarking on AIDS-Related Cultural Production
by What Would an HIV Doula Do?
On October 14, 2018, What Would an HIV Doula Do? partnered with Triple Canopy1 to host a town hall-like event to think through HIV/AIDS-related art and cultural production. The event was titled “What Would an HIV-Informed Cultural Worker Do?” The conversation was part of How We Do Illness,2 a day-long symposium that considered how personal narratives shape public perceptions of sickness, and how cultural workers and institutions contribute to the ongoing response to HIV/AIDS. This title was borrowed from writer Lisa Diedrich, who reminds us that “illness and how we do illness is political.” The symposium was part of “Risk Pool,” an issue of Triple Canopy that asks: How are sickness and wellness de ned and by whom? What are the effects of these definitions, these acts of naming and describing?
For What Would an HIV-Informed Cultural Worker Do?, forty artists, administrators, critics, curators, and individuals living with and impacted by HIV/AIDS gathered to share their insights, frustrations, tactics, and experiences with making, seeing, and contemplating AIDS-related culture in a conversation facilitated by Corrine Fitzpatrick and Theodore Kerr. Participants included: Jordan Arseneault, Emily Colucci, Shirlene Cooper, Lisa Diedrich, Alex Fialho, Johnny Guaylupo, Emma Hedditch, Elizabeth Koke, Carolyn Lazard, Fernando Mariscal, Esther McGowan, Lara Mimosa Montes, Ricardo Montez, Julie Tolentino, and others who chose not to be named.
Emerging from the event were twenty-one questions, compiled and crafted from notes taken that day as well as conversations post the event. Since their release in 2019, the questions have been used by artists, curators, scholars, and writers in schools and art institutions as well as casually among friends and peers to spur conversation in the development of AIDS-related projects. In community and classroom settings, they have been used as a pedagogical tool; conversations have also been had around some of the language of the document, such as the use of the term “cultural production” versus “contribution.” Additionally, the questions have appeared in an issue of On Curating, edited by Kerr, curated into exhibitions and a publication by Fanny Hauser and Viktor Neumann, and they now appear in the pages of this journal.
The form of the document has also been influential. In spring 2020, What Would an HIV Doula Do? released “Twenty-Seven Questions for Writers & Journalists to Consider When Writing about COVID-19 & HIV/AIDS.” It builds on the question format to provide insights and stimulate discussion around what was then the emerging SARS-CoV-2 pandemic, a time which had many thinking back to the early days of HIV. Among the twenty-seven questions, number fifteen asks:
How will your work wrestle with Western biomedicine as it relates to capitalism, colonialism, immigration, the criminal justice system, and other structures that impact survival?
The centrality given to Western biomedicine was also the focus of a film and reading group hosted by the collective Uneasy Medicine. Their program in 2018–19 titled “Uneasy Medicine: AIDS, Pharmaceuticals and Other Ways of Caring” considered HIV in relationship to the pharmaceutical industry, colonization, and forms of care that fall outside of biomedicine, particularly beyond the U.S. and Western Europe. Through a practice of knowledge-sharing the collective considered the following questions:
How does the pharmaceutical industry craft profit from illness? What might happen if we honored, acknowledged, and communicated the fact that drug discovery frequently draws from botanical knowledge drawn from Indigenous peoples? How are Western medicinal treatments combined and remixed with healing practices different from those recognized as effective by modern science? How can we form political alliances across practices of care to build better worlds together?
In regards to the twenty-one questions document, please keep in mind while reading and making use of it that stigma, life experience, and other factors contributed to who was and was not able to attend the event, speak up, and share with authority. The hosts of the symposium and stewards of this document are aware and interested in the biases that occur around public conversations of health, wellness, and culture. We ask ourselves:
What does it mean to host an event about HIV where the majority of those in attendance may be assumed to be HIV-negative? What does it mean to make a valuable resource like this one with an awareness that people living with and deeply impacted by HIV are often underemployed in general and underrepresented in leader- ship positions at museums, galleries, and other cultural institutions?
We hope that readers will consider these questions as well as their own experiences with the virus and take this document as a litany of queries from which a practice of reflection might emerge; an exhortation to make the best possible work about the intersectional legacy and lived reality of responding to HIV/AIDS. For many people not familiar with HIV/AIDS, there can be a hesitancy to get involved, to listen, to act. With the twenty-one questions below, we invite you, regardless of your status, history, or current knowledge, to dive in, to share, respond, and consider how the questions provoke, soothe, and trigger your knowledge, curiosities, and desires. We encourage you to share the questions and your responses with others.