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by Theodore (ted) Kerr

What You Don’t Know About AIDS Could Fill A Museum: Curatorial Ethics and the Ongoing Epidemic in the 21st Century


Rock Hudson, Magic Johnson, and Henki Karlsen

Rock Hudson, Magic Johnson, and Henki Karlsen, three men with HIV who have changed how people in various parts of the world think about the virus, and what we know about the ongoing epidemic. To learn more about how AIDS has impacted the museum culture and the way we discuss AIDS in culture, check out the essays in the COLLECTING section of this issue.


This issue of ON CURATING began trying to find a place for an essay I had written about AIDS to appear within a curatorial context. From there, it bloomed into WHAT YOU DON’T KNOW ABOUT AIDS COULD FILL A MUSEUM—a collection of essays, conversations, visual projects, reprints, and personal reflections from academics, artists, activists, writers, and others from around the world committed to the ongoing response to HIV. The over 40 entries in this issue explore and wrestle with AIDS-related culture in the 21st century, through four themes: forgetting, seeing, collecting, and making, all of which reflect on both the historical turn in contemporary AIDS cultural production, and the ongoing need to keep an eye on the present.

The title of this issue comes from a 2014 panel I put together as the programs manager at Visual AIDS, a New York-based AIDS-focused art non-profit. At the event, writer Hugh Ryan said something that I think reflects the spirit of this journal when he argued for transparency from curators, and museums:

The museum becomes the objective voice, which doesn’t exist. That’s one of the big things, how do we forefront the people behind museums—the ethos behind the museums. How do we let people know what is the voice? Who’s in the room making this exhibit? What are they drawing from? That helps us understand what we’re actually looking at because there is a voice, there is a perspective, and to pretend there isn’t I think it weakens everything.[1]

His quote came months after The New York Times published his op-ed, How to Whitewash a Plague, which called into question the exclusionary nature of AIDS in New York: The First Five Years,[2] an exhibition at the New York Historical Society curated by Jean S. Ashton that Ryan felt left out the foundational role of activists and the LGBT community in the story of AIDS. The article came out during a heady time, in which much about AIDS culture and history was being debated. Several critics called into question the lack of diverse representation in the Oscar-nominated documentary, How To Survive a Plague (David France, 2012)[3]; there were concerns about Jared Leto’s performance as a trans woman with HIV in Dallas Buyers Club (Jean-Marc Vallée, 2013); there was unsavory cross-generational conversation inspired by a poster made by historian Ian Bradley Perrin and artist Vincent Chevalier that read, Your Nostalgia is Killing Me (2014, for PosterVirus); debates were had about the creation of an AIDS memorial in New York City[4]; and during the first run of the nationally touring exhibition, Art AIDS America (co-curated by Jonathan David Katz, and Rock Hushka, 2015), the Tacoma Action Committee staged a die-in calling for more black representation in the show and systemic changes around racial bias at the museum.[5] These conversations, which as you will see in reading the rest of this issue, continue to reverberate to this day, and are rooted, I think, in both the end of a prolonged absence of AIDS-related culture in the public realm, which was then followed up by an intense onslaught of cultural production regarding AIDS history. I have come to dub this twinned phenomena the “Second Silence” and the “AIDS Crisis Revisitation,” and over the last six years, working with academic and filmmaker Alexandra Juhasz, we have populated the terms with meaning.[6] We have come to understand that the Second Silence begins with the availability of life-saving drugs in 1996, causing people in the media and beyond to think that the crisis was over. For over a decade, the epidemic continued, but compared to the highly broadcast cultural production of ACT UP, Keith Haring, and other media and mark makers from the decade prior, within the Second Silence, experiences of the virus were quiet, siloed, and privatized. This shifted with the Revisitation. Cultural production broke through the silence, with films like Sex Positive (Daryl Wein, 2008), United in Anger (Jim Hubbard, 2012), and We Were Here (David Weissman, 2013); exhibitions like ACT UP New York: Activism, Art, and the AIDS Crisis, 1987–1993 (curated by Helen Molesworth and Claire Grace for The Carpenter Center for the Visual Arts and the Harvard Art Museums, 2009) and many other examples. This resulted in an uptick in AIDS-related conversation in public, reunions between estranged activists, cross-generational conversations, new projects, and backlash along with counter-Revisitation centered on the narrowness of the Revisitation’s early focus: urban middle-class white gay-centric communities from the East or West Coast of the US.[7]


Arne Røed, Bente Røed, and Robert Rayford

Arne Røed, Bente Røed, and Robert Rayford are all people with HIV who died before 1981, and whose lives and deaths can help us reconsider the ongoing epidemic. To think about the importance of storytelling, tradition, and oral culture within the AIDS response, spend time with the entries in this issues first section, FORGETTING.


As it happens, the release of this journal coincides with the Revisitation on full view in Europe. This summer alone there are two AIDS-related exhibitions in Zurich: United by AIDS—An Exhibition about Loss, Remembrance, Activism and Art in Response to HIV/AIDS, curated by Dr. Raphael Gygax, at the Migros Museum für Gegenwartskunst, and Problem gelöst? Geschichte(n) eines Virus, compiled by Rayelle Niemann for the Shedhalle. Then, less than 1400 km away in Liverpool, there is a major exhibition of Keith Haring’s work at Tate Liverpool, including many of his AIDS-related works; meanwhile the Schwules Museum in Berlin is working on a large-scale, trans-European AIDS-related exhibition, and the German capital will be host to a conference entitled Living Politics: Remembering HIV/AIDS Activism Tomorrow, which will showcase some of the research coming from the “Disentangling European HIV/AIDS Policies: Activism, Citizenship and Health” research team (EUROPACH).

Considerations of the relationship between silence, attention, and action is, of course, nothing new when it comes to AIDS. Around the same time much of this issue was being edited, scholar and critic Douglas Crimp died. Within his work, Crimp was attuned to the nuances of many things, including culture and AIDS. In his book, Melancholia and Moralism, he argued that avoidance was a default status of the public when it came to HIV/AIDS. “The turn,” he wrote, “was a response to the epidemic from the moment it was recognized in 1981.”[8]

In his generosity, Crimp reminds us that a common refrain throughout the epidemic has been, “AIDS is not over,” a reaction from those on the ground to the constant threat of the public and the government pulling their attention and resources. Examples include the 1989 sticker from Little Elvis that read: “The AIDS Crisis Is Not Over”; to the Visual AIDS exhibition title, Not Over; to artist Gregg Bordowitz’s brilliant turn of phrase, “The AIDS Crisis Is Still Beginning.”

Given that AIDS of course is still still not over, what is the role of curators and other cultural producers? As the editor, it is my hope that WHAT YOU DON’T KNOW ABOUT AIDS COULD FILL A MUSEUM offers some suggested and meaningful ways forward. And as such, this issue of is built upon a belief, laced with slight trepidation, that history and culture play a vital role amid the work to find a cure for HIV, to prevent further premature deaths, and to improve life chances and the quality of life for people currently living with HIV and those understood to be most at risk.


Mykki Blanco, Lou Sullivan, and Nadja Benaissa

Mykki Blanco, Lou Sullivan, and Nadja Benaissa through their art and lives illustrate the many different ways living with HIV can construct a life, for better or worse. Learn more about Mykki in the SEEING section of this issue.


Central to this AIDS work is the centering of people living with HIV and communities deeply impacted by the crisis. The journal begins with a series of entries that offer up lenses through which one can better understand and consider the rest of the issue. These entries include Abdul-Aliy A. Muhammad and Louie Ortiz-Fonseca’s conversation, “A Brief History of HIV,” and Sheldon Raymore’s project “Winter Count.” Together, they offer a brilliant orientation to AIDS history, by pushing against chronology as being the de facto rule to knowing the past and asserting the role of tradition as a vital form of archiving. In their conversation, Muhammad and Ortiz-Fonseca share their stories as two influential and tireless activists and cultural producers within the AIDS response and how that relates to them being vital-voiced, queer people of color living with HIV. Through their mutual respect, love, jokes, and frustration, a reader is better prepared to read the rest of the issue; similarly with Raymore’s artwork “Winter Count,” which provides an AIDS timeline rooted in First Nation experiences of the virus. By placing this near the front of the journal, curators as readers are invited to consider what it would mean to privilege the voices of the most experienced within the crisis, who are also often the most side-lined.

The contributions of Muhammad, Ortiz-Fonseca, and Raymore are in the first section of WHAT YOU DON’T KNOW ABOUT AIDS COULD FILL A MUSEUM, which is titled FORGETTING. Given that this journal can be considered part of the AIDS Crisis Revisitation, it is interesting to consider the relationship between silence, remembering, and forgetting. In this section, archivists, activists, and academics alike take up this consideration, reflecting on how time, history, and representation relate to change-making tactics, community, and visual culture. What gets dragged forward? What is the role of context in exhibition? How do we save with loss—be it people, ideas, or hope?  These are questions across all the entries in this section, including Rahne Alexander’s personal and informative essay, “The Lost & The Found: Video and Memory,” in which she introduces the reader to Louis, a long-term AIDS cultural activist who has used his own story to keep AIDS on the agenda, even when people would have preferred to look away. Common themes bond Adam Bardu and John Paul Ricco in their conversation, “Cultural Inheritances of Grief,” in which the two scholars engage in an intergenerational dialogue that navigates the stickiness of trauma, desire, and exhibition-making over time. Pairing nicely with this conversation is “Lucky Man,” a visual work and statement by artist Michael McFadden that reflects on the importance of 1996 and 2012 in terms of medical breakthroughs and cultural reckonings.


Zaire 1959 and Democratic Republic of Congo 1960

Zaire 1959 and Democratic Republic of Congo 1960 are the names given to the oldest surviving HIV samples, which belonged to people who lived in that region at the time. Peta is the name of the person whose hand can be seen in the infamous photo of David Kirby on his deathbed. These three people remind us that most people with HIV are not often given the option to be named or represented, on their terms or otherwise. Consider the MAKING section of this issue to read about ways that artists, faith leaders, and others work to better include a diversity of voices and experiences when it comes to HIV.


Thinking about forgetting in a different light are entries in this section that consider archive through the lens of collection, criticism, and recall to great effect. Pushing against erasure, artist and archivist Sian Cook has long been saving HIV-related ephemera and shares it through her project, “UK Archive of Community AIDS Culture,” much of which predates the accessible use of the Internet. From around the same time period, AIDS philosopher and artist Avram Finkelstein does a deep dive into an iconic work, providing historical context along the way, in “Enjoy AZT: The Branding of HIV/AIDS.” In the same vein, art historian Kate Hallstead provides readers a glimpse at the tender possibilities of exhibition in her essay, “Corporeal Materials, Presence, and Memory in Jerome Caja’s Exhibition Remains of the Day.”

Ending on an emotional note, I am very honored to include a beautiful note from once Brooklyn Historical Society Director, David M. Kahn. It was a staff-wide memo he shared prior to the opening of the 1993 exhibition, AIDS/Brooklyn, in which he works to ensure that people living with HIV feel comfortable visiting the exhibition, making an emotional plea for decency while evoking the loss of his partner who had HIV. The FORGETTING section fittingly concludes with “WHAT I REMEMBER,” a visual project/poem by artist Dudu Quintanilha, which can also be read as a script between two people fighting against forgetting and for a right to remember, and Legacy: A Timeline of HIV/AIDS, the script of artist Carlos Motta’s video of the same name on view at United by AIDS in Zurich.

The second section is SEEING, which of course is not just an activity with the eyes, but rather a practice of vision, imagination and—when it comes to HIV/AIDS—negotiating that which has been rendered silent, absent, and erased, be it from history or the gallery. The section begins with activists and friends Emily Bass and Yvette Raphael, who come together for “Picturing Women in Africa,” an affirming conversation about the limits and possibilities around how women in Africa are rendered within the AIDS response. In the conversation, Raphael asserts a call for radical subjectivity in the face of activism, which is also at the heart of “The Denver Principles,” written in 1983 by people living with HIV who were naming the terms of their coverage, reprinted here as a reminder and talisman for our work.

Running through the rest of the second section is an emphasis on the role of artists in cultural production, and the practice of conversation as a means of making issues, people, and ideas visible. There are four conversations in this section (maybe a comment itself on how visibility happens): artist Kelvin Atmadibrata’s relationship with HIV is teased out by oral historian Benji de la Piedra in “HIV Ambivalence and Game Playing Influence”; the multi-talented trio of Luiza Kempińska, Hubert Zięba, and Szymon Adamczak add visibility to the virus within their home country in “AIDS in Poland”; artist Carlos Motta and critic John Arthur Peetz suggest that what we are envisioning when it comes to PrEP is not actually HIV but something else, in “Because PrEP is Not About AIDS”; and in a tender exchange, artist Mavi Veloso and anthropologist Nicholas D’Avella come together to discuss Veloso’s work while tackling influence, nationhood and ways of seeing and representing oneself.

Included in SEEING is scholar Edward Belleville’s current observations about (in)visibility of HIV through the work of a beloved superstar, "If you Wanna See Me: Race, Visibility and Seropositive Futures in Mykki Blanco's Collaboration with Visual AIDS”; Stamatina Gregory’s groundbreaking essay on the (lack of) inclusion of a taboo subject within museums, particularly important when talking about AIDS, in “On Drug Use in the Museum” is a study in what museums are often too scared to have on view, and my own  essay, “From Tactic to Demand:  HIV Visibility Within a Culture of Criminalization.” Like Forgetting, SEEING ends with a creative project, this time by artist and writer Charan Singh, who mixes advocacy, memoir, and creativity in a play and glossary entitled “Storytelling as a Political Act.” It is a clever expression in which a community of people witness each other, callng into question the need to be seen by others when it comes to survival. Coming from a different but related point of view, reprinted in this journal are Demian DinéYazhi ́’s powerful images that serve as a reminder that, “HIV Affects Indigenous Communities.”

The third section is COLLECTING, and here, curators, researchers, and public intellectuals argue, converse, reflect upon, and consider best practices, personal experiences, and recent examples of curating AIDS, be it in book, gallery, museum, or memoir form. It is here that Hugh Ryan may find much of what he is looking for, examinations into the ideas, experiences, and feelings behind AIDS exhibitions. Dominating this section are explorations around the way cultural institutions have been shaped by attempts to include HIV/AIDS. This is specifically meaningful as it marks how the path towards the AIDS Crisis Revisitation was taking shape within the Second Silence. Essays in this section include Marika Cifor’s “Status = Undetectable: Curating for the Present and Future of AIDS”; Catalina Imizcoz’s “Seropositive Images: Artistic Practices related to HIV during the 1990s”;  Sandrine Musso, Renaud Chantraine, and Florent Molle’s “AIDS Politics of Representation and Narratives: A Current Project at the Museum of European and Mediterranean Civilizations (Mucem) in Marseilles, France”; Dr. Manon S. Parry’s “Beyond the Medical Gaze: Patients, Practitioners, and Caregiving in AIDS Exhibitions”; and J. Ricky Price’s “Institutions are Never Silent: Institutional Memory in the history of HIV/AIDS.”

Thinking about collecting from other angles, including the ethics of inclusion, history-making, and accounting for difference and emotion are other contributions to this section. In a wide-ranging conversation, Jean Carlomusto, Hugh Ryan, and Alexandra Juhasz discuss their joint curatorial practice in “Compulsive Practice and the Everyday of AIDS,” which dovetails nicely with Heather Holmes’ exploration of a personal project, “Public Ruptures, Public Readerships: AIDS in Writing.” In reading the two pieces together, the reader is exposed to an interesting array of concepts around representation of people and ideas, in time, through form.

Collecting from an artists’ perspective is central to Lyndon K. Gill’s review, “Field Notes from the Afterlife: Lyle Ashton Harris’ Living Archive” and curator and artist Nelson Santos’ visual project, “Love Happened Here.” Here, we see the impact of accumulation, the archive as aesthetic and way of life, and the role of the visual in representing nuance, care, and love within the epidemic. Relatedly, the section ends with a reprint of the Tacoma Action Committee’s “Press Release,” which they released in response to the Art AIDS America exhibition, a document we can see as a commentary on the need to retain the humanity within our curatorial practices.


Matthew Shepard, Bryn Kelly, and Roxana Hernández

Matthew Shepard, Bryn Kelly, and Roxana Hernández complicate what it means to die with HIV.  Shepard was left for dead, frozen on a fence in Wyoming, Kelly took her own life, and Hernández died while in US Immigration and Customs Enforcement custody. Their lives remind us that HIV is an intersectional issue beyond the virus. Making space for complicated lives and deaths is part of representing AIDS in public in the 21st century.


Lastly, MAKING. This section asks the question: How to have cultural production in an ongoing epidemic? It begins with advice from experience. Artist and organizer Jordan Arseneault provides well-earned insight in “How To Have a Lecture Series in an Epidemic”; Alper Turan gives an intimate look into his groundbreaking exhibition about HIV in Turkey in his essay, “Positive Space”; Greg Thorpe looks back at his work at bringing HIV/AIDS into nightlife in “On Nightlife”; Jaime Shearn Coan gives a postmortem after editing a journal dedicated to HIV/AIDS in “How to Catalogue a Crisis: An Afterword to Lost and Found: Dance, HIV/AIDS, NewYork, Then and Now (2016),” Michael Miiro shares his experience, looking at what both the disability and HIV communities need to do to be more inclusive in “On Disability and HIV”;  and in “On Spirituality,” Chaplain Michael Crumpler sheds light on the need for spirituality within exhibitions about AIDS. These texts when read together provide a meaningful and meaty primer to any upcoming AIDS-related production.

In terms of MAKING, the section also includes texts around how AIDS can make a person, a friendship, or a bond as in artists Kairon Liu and Manuel Solano’s conversation, “Could I Be A Happy Person?”; how AIDS can make a family, as in critic Emily Colucci’s “Art and Parents Lost to AIDS,” an essay that looks at artists creating work about having HIV in their families; and finally, how HIV can be used to make sense (or not) of the world, in curator Vladimir Cajkovac’s essay  "How to (Dis)quiet a Vampire.”

Both the journal as a whole and this section end with grounding advice. Before they died in 2017, L.N. Hafezi was inspired by the artist Chloe Zbuillo and produced a lovely tribute that offers sage advice for would-be culture workers in “[INSTRUCTIONS FROM CHLOE]—curatorial statement.” Just as profoundly, a hard-working handful of people working at the front line of the AIDS response came together in 2018 to produce a document that is a must-read for people doing HIV work: “Intersectionality, HIV Justice, and the Future of Our Movement.” And finally, with the belief that this journal is a resource as much as anything else, WHAT YOU DON’T KNOW ABOUT AIDS COULD FILL A MUSEUM ends with a series of prompts to read before doing the work, “Twenty-One Questions to Consider When Embarking upon AIDS-Related Cultural Production (2018),” from the collective What Would an HIV Doula Do?.


Katrina Haslip, Joann Walker, and Essex Hemphill

Katrina Haslip, Joann Walker, and Essex Hemphill are three of countless names from our collective AIDS archives whose names and contributions should be known. In thinking about WHAT YOU DON’T KNOW ABOUT AIDS COULD FILL A MUSEUM, whose work would you wish more people knew about?

This issue was a year and a half in the making. The process took so long in part because this was largely a volunteer experience. I, and the majority of the contributors, did not get paid. It also took a long time because I kept on adding contributions due to both a real investment in the work, and a desire to bring in as much thought-provoking and relevant work as possible (with an awareness that many voices are still missing). The near never-endingness of the project, and the constant additions relate to my curatorial vision when it comes to HIV: making culture about AIDS should mirror the social experience of AIDS; it should be an assemblage; messy, social, and replicable. It should involve risk and discomfort, but also new and expansive ways of seeing the world, and it should be interactive and intimate. It should inspire connection, and be political in nature, even when it seems it is not. Finally, it should be challenging, leaving a reader, a curator, or an activist to ask questions, spark conversation, and keep the conversation and action alive.

The images in this text are from a project I did in anticipation for a talk I delivered as part of The Parliament of Bodies, on the occasion of Bergen Assembly 2019 at the invitation of Paul B. Preciado and Viktor Neumann, with special thanks to Anne Szefer-Karlsen.



[1] You can read the transcript here: https://visualaids.org/events/detail/what-you-dont-know-could-fill-a-museum-activism-aids-art-and-the-institutio.

[2] You can read the piece here: https://www.nytimes.com/2013/08/04/opinion/sunday/how-to-whitewash-a-plague.html.

[3] Important criticism of Revisitation-based media includes How to Survive: AIDS and Its Afterlives in Popular Media by academic Jih-Fei Cheng, which problematizes representation in David France’s film How To Survive a Plague.

[4] I have written about the new generation of AIDS memorials and monuments, within a historical context, for C Magazine: “How to Have an AIDS Memorial in an Epidemic,” https://cmagazine.com/issues/142/how-to-have-an-aids-memorial-in-an-epidemic.

[5] To learn more about the Tacoma Action Collective’s demonstration of Art AIDS America due to the show’s lack of black representation, visit Hyperallergic for an article called “A History of Erasing Black Artists and Bodies from the AIDS Conversation.”

[6] To read some of our work on these subjects, check out:  Alexandra Juhasz and Ted Kerr, “Home Video Returns: Media Ecologies of the Past of HIV/AIDS (Web Exclusive),” Cineaste (2014); Alexandra Juhasz and Ted Kerr, “Stacked on Her Office Shelf: Stewardship and AIDS Archives,” The Center for the Humanities (2017).  .

[7] Douglas Crimp, Melancholia and Moralism: Essays on AIDS and Queer Politics (Cambridge, MA: MIT Press, 2002).

[8] Douglas Crimp, Melancholia and Moralism: Essays on AIDS and Queer Politics (Cambridge, MA: MIT Press, 2002).

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Issue 42



by Theodore (ted) Kerr

by Abdul-Aliy A. Muhammad and Louie Ortiz-Fonseca

by Sheldon Raymore

by Michael McFadden

by Rahne Alexander

by Adam Barbu and John Paul Ricco

by David Kahn and Brooklyn Historical Society

by Dudu Quintanilha

Artist Kelvin Atmadibrata in Conversation with Oral Historian Benji de la Piedra

by Emily Bass and Yvette Raphael

by the People with AIDS advisory committee

A Conversation Between Szymon Adamczak, Luiza Kempińska, and Hubert Zięba

by Demian DinéYazhi' and R.I.S.E.

An Exchange to Expand on the PrEP Manifesto between Carlos Motta and John Arthur Peetz

A Conversation Between Mavi Veloso and Nicholas D’Avella

A Conversation Between Jean Carlomusto, Alexandra Juhasz, and Hugh Ryan

by Nelson Santos

by Tacoma Action Collective

by Vladimir Čajkovac

Cecilia Chung, Olivia Ford, Deon Haywood, Naina Khanna, Suraj Madoori, Charles Stephens