Watch documentation of the readings, screening, and conversations about illness narratives that comprised You Can Hear It in My Voice, the second session of How We Do Illness, held October 14, 2018. Participants Lana Lin, Beza Merid, Carolyn Lazard, and Triple Canopy guest editor Corrine Fitzpatrick discussed the role of belief in biomedical healthcare, how to identify a “responsible patient,” and how personal illness testimonials inform policy and public opinion.

Suggested reading and further resources, gathered by What Would an HIV Doula Do?

Jason Baumann, Kia Benbow, Jim Hubbard, Karl McCool, et al, “(re)Presenting AIDS: Culture and Accountability” (transcript of public forum, New York, August 20, 2013), Visual AIDS.

Emily Bass, “How To Survive a Footnote,” n+1, Fall, 2015.

Gregg Bordowitz, The AIDS Crisis Is Ridiculous and Other Writings, 1986-2003 (Cambridge: The MIT Press, 2004).

Tara Burk, Jean Carlomusto, Vincent Cianni, Brittany Duck, and Hugh Ryan, “What You Don’t Know Could Fill A Museum: Activism, AIDS, Art and the Institution” (transcript of public forum, New York, January 4, 2014), Visual AIDS.

Lisa Diedrich, Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism (Minneapolis: University of Minnesota Press, 2016).

Kenyon Farrow, “When My Brother Fell, Again,” We Who Feel Differently, November 13, 2014.

Avram Finkelstein, After Silence: A History of AIDS through Its Images (Berkeley: University of California Press, 2017).

Adam M. Geary, Antiblack Racism and the AIDS Epidemic: State Intimacies (Palgrave Macmillan US, 2014).

Alexandra Juhasz and Theodore Kerr, “Home Video Returns: Media Ecologies of the Past of HIV/AIDS,” Cineaste, Summer 2014.

Theodore Kerr, “A History of Erasing Black Artists and Bodies from the AIDS Conversation,” Hyperallergic, 2015.

Tyrone Palmer, “Under the Rainbow,” the New Inquiry, July 28, 2015.

Hugh Ryan, “How to Whitewash a Plague,” the New York Times, August 3, 2013.

Alisa Solomon, “What Does It Mean to Remember AIDS?”, the Nation, November 30, 2017.

Twenty-One Questions to Consider When Embarking on AIDS-Related Cultural Production

In recent years, there has been a resurgence in the creation and dissemination of AIDS-related culture. Vital testimonies, memories, tactics, and artifacts, previously in danger of being lost, have been shared and preserved; cross-generational dialogue has flourished; and many people who have died with HIV/AIDS have been memorialized. However, there have been persistent problems with the conveyance of this history: gaps in the information that is shared and biases around who is remembered. Artists, curators, and cultural institutions have been put on notice by activists for white-washing the plague, being overly gay-centric, focusing too much on North American coastal metropoles, and ignoring the present by treating the crisis as if it is not ongoing.

In order to think through the current landscape of HIV/AIDS-related culture, Corrine Fitzpatrick, on behalf of Triple Canopy, and Theodore Kerr, of What Would an HIV Doula Do?, hosted an open conversation on October 14, 2018, entitled What Would an HIV-Informed Cultural Worker Do? The conversation was part of How We Do Illness, 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. The title was borrowed from the 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 defined, and by whom? What are the effects of these definitions, these acts of naming and describing?

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. Participants included Jordan Arseneault, Shirlene Cooper, Emily Colucci, Lisa Diedrich, Alex Fialho, Johnny Guaylupo, Emma Hedditch, Elizabeth Koke, Carolyn Lazard, Esther McGowan, Fernando Mariscal, Lara Mimosa Montes, Ricardo Montez, Julie Tolentino, and others who chose not to be named.

Below is a non-exhaustive series of questions inspired by the event. These questions are meant to be provocations and are not put forward with the implication that there are correct answers. In reading and making use of this document, please keep in mind 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 leadership 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 the ongoing response to HIV/AIDS.

  1. What responsibilities do you feel knowing that, as a producer of AIDS-related culture, you are participating in the creation of history?
  2. How do you define inclusion? What does community mean to you?
  3. Who are your people? Who are the artists, activists, friends, and lovers that act as both source and recipient of your power, energy, and insight?
  4. How has your understanding of HIV been influenced by your experiences with the virus? How does this improve the work you do? How does it limit the work you do?
  5. Regardless of your HIV status, what is at stake for you, personally, in creating AIDS-related culture?
  6. How are we compensating, including, and respecting the experiences of our collaborators who are living with HIV?
  7. How do we make it clear that any expression of AIDS-related culture is just a sliver of a sliver of the larger conversations about HIV/AIDS?
  8. How is our understanding and dissemination of knowledge about HIV/AIDS shaped by gender, race, class, sexuality, religion, geography, poverty, disability, and other aspects of who we are, how we live, and how we are perceived?
  9. How do we incorporate the ongoingness of HIV/AIDS into our work?
  10. How do we factor the politics of our collaborators and partners into our work?
  11. How do sex and drugs figure into current representations of HIV/AIDS?
  12. How might we unpack the ways in which the state has factored into our understanding of the virus?
  13. How do we account for the ways in which HIV/AIDS keeps all of our bodies entangled and vulnerable?
  14. How are we relating HIV/AIDS to other illnesses and social conditions, especially as we continue to educate people about the virus?
  15. How does our AIDS-related work engage with the people who were diagnosed today? Last year? Last century?
  16. What do we consider an AIDS-related archive to be? What is included?
  17. Is the production of AIDS-related culture a form of activism? Is it always?
  18. How can we learn, reclaim, and signify loss—not just of people but of ideas, tactics, experiences, and ways of being?
  19. How can we keep physicality—as in the effects on the body of aging with illness—at the forefront of our thinking about AIDS-related cultural production?
  20. How are we pushing back against the fact that people living with the virus are often positioned as the content of AIDS-related culture and less frequently as the producers of, or even the audience for, that culture?
  21. How do we seek out the perspectives and experiences of people and communities who are living with and impacted by HIV/AIDS and with whom we aren’t already in conversation?
With Theodore Kerr, Carolyn Lazard, Lana Lin, Beza Merid & What Would an HIV Doula Do? 2:00–6:30 p.m. 264 Canal Street, 3W, New York, New York

Can’t make the event? Live-stream the second session here.

How We Do Illness is a two-part symposium that considers how personal narratives shape public perceptions of sickness, and how cultural workers and institutions contribute to the ongoing response to HIV/AIDS. The title is borrowed from the writer Lisa Diedrich, who reminds us that “illness and how we do illness is political.” The symposium is part of Risk Pool, an issue that asks: how are sickness and wellness defined, and by whom? What are the effects of these definitions, these acts of naming and describing?

What Would an HIV-Informed Cultural Worker Do?
An open discussion led by Theodore Kerr of the collective What Would an HIV Doula Do?
2 p.m.–4 p.m.
Free admission, coffee and snacks provided

In recent years, galleries, museums, cinemas, and lecture halls have been important staging grounds for revisiting the early years of the AIDS crisis. High-profile retrospectives, documentaries, publications, and the like have provided invaluable opportunities to explore the activism and cultural production of the initial responses, promote cross-generational dialogue, honor the dead, and communicate vital and urgent political strategies for facing the still-present epidemic. It is worth arguing, however, that there has been a notable and recurrent lack of inclusivity with regard to who is portrayed and discussed, as well as a lack of engagement with the tactics that underrepresented individuals and communities employ in order to live, thrive, and survive.

How might cultural workers and institutions better equip themselves to meaningfully consider HIV/AIDS in exhibitions, films, texts, and performances? What Would an HIV-Informed Cultural Worker Do? will be an open, informal, discussion facilitated by Theodore Kerr of the collective What Would an HIV Doula Do? Members of the public, and cultural workers in particular, are invited to listen and to exchange ideas about how we can best reflect the intersectional legacy and lived reality of the ongoing response to HIV/AIDS.

You Can Hear It In My Voice
Readings, a screening, and a conversation about illness narratives, with Carolyn Lazard, Lana Lin, and Beza Merid
5 p.m.–6:30 p.m.
$7 suggested donation Live-stream this session here

In The Cancer Journals (1980), Audre Lorde reflects, following a surgery to remove a tumor from her breast, on illness as being at once intimate and social. “Of course, I am afraid—you can hear it in my voice—because the transformation of silence into language and action is an act of self-revelation and that always seems fraught with danger,” she writes. When confronted with her mortality, “priorities and omissions became strongly etched in a merciless light, and what I most regretted were my silences.” Lorde’s words still resonate today, as partisan battles over health-care reform jostle our lives, reinforcing the fact of illness as paradigmatically personal and political. To that point, stories of illness, ranging from GoFundMe testimonials to best-selling memoirs, have proliferated, sometimes with the direct effect (if not objective) of informing policy and public opinion.

In 2013, Carolyn Lazard published “How to Be a Person in the Age of Autoimmunity,” which is “equal parts a processing of the trauma of illness and an exploration of how the body is treated under the regime of capitalism.” The essay created a space within the art world for candid discourse about personal health. At You Can Hear It In My Voice, Lazard will read from an essay in progress, to be published in Risk Pool, that asks why there is so little room for belief within biomedical healthcare. Lazard will be joined by Lana Lin, author of Freud’s Jaw and Other Lost Objects: Fractured Subjectivity in the Face of Cancer (2017), which examines how cancer disrupts feelings of bodily integrity and agency. She’ll discuss and screen an excerpt of The Cancer Journals Revisited (2018), her experimental nonfiction film that reimagines Lorde’s book. Finally, Beza Merid, whose scholarship asks how various actors shape what it means to be a “responsible” patient, will speak about the role of affective appeals and illness narratives in resisting the opposition to healthcare reform. After these presentations, the participants will be joined in conversation by Risk Pool guest editor Corrine Fitzpatrick.

Seating is on a first-come, first-served basis. In order to ensure that events are accessible and comfortable, we’ll open the doors thirty minutes prior to each event and strictly limit admittance to our legal capacity. Please check Triple Canopy’s Facebook and Twitter accounts for updates, as we’ll indicate if events are sold out.

Triple Canopy’s venue is located at 264 Canal Street, 3W, near several Canal Street subway stations. Our floor is accessible by elevator (63" × 60" car, 31" door) and stairway. Due to the age and other characteristics of the building, our bathrooms are not ADA-accessible, though several such bathrooms are located nearby. If you have specific questions about access, please write at least three days before the event and we will make every effort to accommodate you.

Participants
  • Theodore Kerr is a Canadian-born, Brooklyn-based writer, artist, and organizer whose work focuses primarily on HIV/AIDS. He is a founding member of What Would an HIV Doula Do? Kerr earned his MA from Union Theological Seminary where he researched Christian Ethics and HIV. He teaches at The New School.
  • Carolyn Lazard is a Philadelphia-based artist working across video, sound, sculpture, and performance. They have screened and exhibited work at Essex Street Gallery (New York City), Anthology Film Archives (New York City), the Kitchen (New York City), the New Museum (New York City), Wexner Center for the Arts (Ohio), Camden Art Centre (UK), Kunsthal Aarhus (Germany), and the Stedelijk Museum (Amsterdam). They have published writing in the Brooklyn Rail and Mousse Magazine.
  • Lana Lin is an artist, filmmaker, and writer based in New York City. She is the author of Freud’s Jaw and Other Lost Objects: Fractured Subjectivity in the Face of Cancer (2017). She has made a number of films that fall into the capacious category of experimental, critical, and creative nonfiction, some of which are archived here. She collaborates on research-based multidisciplinary projects with H. Lan Thao Lam as Lin + Lam. She teaches in the school of media studies at the New School.
  • Beza Merid is an LSA Collegiate Fellow in the department of communication studies and a faculty affiliate in the science, technology, and society program at the University of Michigan-Ann Arbor. Merid’s research examines how patients, caregivers, health institutions, and policy-makers communicate what it means to be a “responsible” patient. He is particularly interested in the role that illness narratives play in this communication, and in how these narratives are used in the context of health activism.
  • What Would an HIV Doula Do? is a collective of artists, activists, academics, chaplains, doulas, health-care practitioners, nurses, filmmakers, AIDS Service Organization employees, dancers, community educators, and others joined in response to the ongoing AIDS crisis. WWHIVDD? understands a doula as someone who holds space for others during times of transition. WWHIVDD? understands HIV as a series of transitions in someone’s life that does not begin with testing or diagnosis and does not end with treatment or death. Asking questions is foundational to the collective’s process.