How to Have an AIDS Memorial in an Epidemic
by Theodore Kerr
Arguably, the most well-known undertaking of HIV memorialization is the NAMES Project’s AIDS Memorial Quilt, imagined by activist Cleve Jones. First presented to the public in 1987, 1,920 handmade quilt panels covered a space larger than a football field on the National Mall in Washington, D.C. Each panel was a tribute to a friend, lover, parent or stranger who had died with HIV.
In 2012, for the XIX International AIDS Conference, hosted in D.C., the Quilt was shown again in its entirety, for the first time in 16 years. Too large by that point to be displayed all in one place, with over 47,000 panels dedicated to more than 90,000 individuals, the quilt “blanketed the capital”—as promotional material at the time declared—laid out over the National Mall, as well as across museums and other cultural spaces throughout the city.
In 1986, a year before the Quilt’s debut, Michael Lee and a partner cultivated an abandoned plot of land in Houston, left by a railroad company, to create the Texas AIDS Memorial Garden. Since then, the site has become, as Lee describes on his website, “a verdant flowering oasis in the midst of the city, dedicated to the memory of those who died of AIDS. It translates their memory into a garden full of life and a habitat for butterflies and other wildlife.” Over the years, countless community members have tended to the garden, cultivating its growth while fighting for the land’s integrity from would-be garbage dumpers, developers and the City of Houston, which cut through the garden with the construction of a bike path that many in the community didn’t want.1
Unlike many monuments or memorials in the west—most often created in the aftermath of war, or in honour of a noteworthy person, long dead—the Quilt and the Garden are constituted and reconstituted from the ever-emergent frontlines of the epidemic. Existing panels of the Quilt are stored and brought out again. New panels are made. Shrubs in the garden are pruned, flowers are planted.
Conceived of at a time of mass death, intense activist mobilization, government neglect and public apathy, the Quilt and the Garden— like so much of the AIDS-related culture made in an earlier era—are assemblages of multivalent purpose: to honour the dead, provide shape to the crisis, educate the public, increase AIDS awareness and provide a platform for activism. Take, for instance, Montreal’s Parc de l’espoir. The journey to create an AIDS memorial in the city began when activists started to occupy an abandoned lot in the city’s Gay Village in 1990 with ribbons and mementos— only for the lot to be cleared repeatedly by city workers. Finally, in 1996, the City relented and the lot was designated a commemorative space. The Parc, the Quilt and the Garden embody what memory scholar Marita Sturken wrote about in her 1997 book, Tangled Memories: “the desire to memorialize the AIDS epidemic while it is still occurring reveals the need to find healing amid death.”
Fast-forward to the 21st century. In the decades since the medical world first began to recognize HIV, there have been many advances: the rollout of life-saving medication in 1996;2 the understanding that if someone living with HIV is on treatment the virus is untransmittable;3 the functional cure of two to three people once living with HIV in Europe;4 and the introduction of PEP and PrEP.5 Yet, the crisis of HIV remains. Worldwide almost 1 million people died with HIV in 2017. Of the 36.9 million people currently living with the virus, 40 percent do not have access to medication.6 It has been estimated that 3.3 percent of the homeless population in the US is HIV positive (compared with 1.8 percent in the stably housed population), and in Canada, there have been almost 200 people sentenced to jail for having HIV. 7 The burden of the virus is intensified for women, people of colour, people living with multiple disabilities, people detained in prison and people living in poverty. HIV is one more obstacle to survival. With all of this in mind, what is the role of an AIDS memorial in an ongoing crisis?
There are over 40 AIDS memorials and monuments across the US and Canada (memorial referring to a site that names and remembers the dead; a monument being a marker of a period or an event). Like much of AIDS culture, memorialization projects reflect the nature of the crisis as it was when they were created. In the silence around AIDS that permeated western culture after 1996 and in the shadow of 9/11, memorials made in the early aughts are intimate, hyperlocal and often tucked away or hiding in plain sight. They are the work of small yet mighty communities using modest means to remember dead friends, and the Herculean efforts that were mounted against their premature death. Examples include a walkway approaching White Street Pier in Key West, Florida; an etched glass window at the AIDS Memorial Chapel in Albuquerque, New Mexico; a multimedia memorial panel at the AIDS Committee of Newfoundland and Labrador; and a series of glass discs depicting the faces of local people living with HIV in New Orleans, Louisiana.
Among existing monuments and memorials, the most common format is the garden. There are more than 20 across Canada and the US, not necessarily modelled after the one in Houston, but in the same spirit. The most well known is the National AIDS Memorial Grove in San Francisco, which opened in 1991, with the city’s mayor and others planting trees to mark a decade of struggle with the virus.
What many of the earliest memorials and some of the ones created after 9/11 have in common is a space to list the names of the dead, to be added to over time, and seen and read aloud at annual World AIDS Day vigils. The importance of naming is an example of what African American literature and art scholar Dagmawi Woubshet, in his 2015 book. The Calendar of Loss, has lovingly called the “trope of inventory taking” that permeated the earlier periods of AIDS cultural production, marked by compounded loss and trauma, resulting in compulsions to say and re-say, share and share again, the names of the dead.
Recent AIDS memorialization projects are different. Not only are they in central, visible locations, but they have also moved away from the inventory trope. Central to the Provincetown AIDS Memorial, in Massachusetts, unveiled in 2018 near the City Hall, are engraved poems and the word “remembering.” Similarly, the latest New York City AIDS Memorial, opened in 2016 in the heart of Greenwich Village, features a Jenny Holzer installation of a Walt Whitman poem. Beyond the East Coast, a different yet related tactic is becoming apparent. The AIDS Memorial Pathway in Seattle and STORIES: The AIDS Monument in Los Angeles are both set to open in 2020, also in highly visible locations. The role of names in either project is not clear, but marketing for both focuses instead on incorporating stories from the community into the final designs. Rather than centring names, these new and emerging memorialization projects in high-profile locations suggest AIDS is being understood less through individual loss and more through the lens of collective history, (re) marking AIDS as a national issue.
These developments echo a phenomenon that AIDS activist and academic Alexandra Juhasz and I call the AIDS Crisis Revisitation8— a name for the current cultural moment we see as starting around 2008, in which AIDS of the past is being historicized in art exhibitions, documentaries, books and feature films. Within the Revisitation, important discussions have emerged: whose histories and experiences are being shared? What stories are being told and untold? What impact is the focus on the past having on people living with HIV/AIDS in the present? How do you remember something while it is ongoing?
Last fall, I taught a class on the very question raised in this essay: how to have an AIDS memorial in an epidemic. After looking at the landscape of AIDS culture (past and present), my students and I came to the conclusion that AIDS memorials work best when they:
1. Maintain and build upon the activist goals of the movement.
2. Create culture about the past, present and future of AIDS.
3. Say not only the names of people who died with HIV, but share the ways they lived, and the tactics they used to love, fight, die, etc.
4. And, most importantly, communicate the uniqueness of HIV: a deadly virus linked with intimacy, pleasure, stigma and transmission; treatable—but not cured—by medicine and community, yet exasperated and prolonged by systemic bias and inequitable social and political forces.
Ideally, we argue, memorials should be done in ways that reflect aspects of the crisis itself, which is to say: be collaborative; involve risk and shared vulnerability; be replicable, while also being disruptive, educational and able to change, accumulating meaning, stories and history over time. One prime example of that for us was the 2016 dance, how to survive a plague, by Orlando Zane Hunter, Jr. and Ricarrdo Valentine of Brother(hood) Dance! The duo claimed the name of their performance back from an HIV-related, Oscar-nominated film famous for its lack of representation of black people and people of colour. In their work, Hunter, Jr. and Valentine express generations of black life with HIV, honouring the ways that people, including themselves, thrive, survive—and at times die—with HIV. Throughout the show, names of people with the virus are evoked, and near the end, a soul train is created. Members of the audience join Hunter, Jr. and Valentine, glowing with sweat, on stage to dance. how to survive a plague provides ritual, education and celebration.
Other examples of memorials that embodied our considerations included Food For Thought in Forestville, California (which is part of a food bank); The Wall Las Memorias Project in Los Angeles, which is a physical monument (with a wall of names and murals) but which also includes a nearby health clinic for people impacted by HIV and other chronic illnesses; and Day Without Art. This annual event was created by Visual AIDS in 1988 to pressure art organizations, museums and galleries to take direct action regarding the plague decimating their world. My class and I were impressed that 10 years after it was created, VA changed the event’s name to Day With(out) Art. They added the parentheses, as explained on the VA website, “to highlight the ongoing inclusion of art projects focused on the AIDS pandemic, and to encourage programming of artists living with HIV,” a result of people with HIV living longer. The recurring nature of the event and the title shift reflected our four considerations, and—most importantly—centred people with the virus, both those who are alive and those who have died.
Notions of process are central to current thinking around AIDS memorialization. Both the National AIDS Memorial Grove and STORIES are including programming as part of their work. In his 2015 text, “AIDS Memorialization: A Biomedical Performance from Viral Dramaturgies,” academic Marc Arthur wonders if PrEP isn’t a monument of sorts, a daily ritual done by HIV-negative people to consider (and remember) the history that led them to be able to distance themselves from the stigma and the virus. And in a 2013 essay in which he provides a people’s history of Clean Needles Now—a needle exchange program that grew out of overlapping activist and artistic communities in LA in the 1990s—AIDS activist and artist Dont Rhine makes the case that needle exchange is as foundational to the stories we need to tell about AIDS as Freddie Mercury, red ribbons and ACT UP. As life-giving institutions, birthed in the earliest days of the AIDS epidemic, all needle exchange programs and supervised injection sites are memorial sites; every clean needle is a torch passed, a tactic shared, a monument to caring.
Thinking about how to survive a plague, PrEP, Day With(out) Art and needle exchanges, the story of AIDS memorialization is a history of process-as-AIDS-memorials that begins with the AIDS Quilt and the Texas Memorial Garden. Both are sites of communal happenings, in which participation is encouraged not merely through awe (as is the case with more traditional memorials), but through participation: stitching, tending, witnessing. These forms of memorialization are examples of what scholar James Young proposes in his writing on counter-monuments,  which he argues use tactics to place the work of memory back onto the public as a process and as a practice of living with the past. In this way, memorials change over time, with the past and present collectively negotiated in public. Not forgetting is not enough. In the face of the ongoing crisis, action is needed.
Last month, as I began to get ready for my AIDS memorial class, which I will offer again in the fall, I began looking for content to teach. Around this time, my friend, artist Julie Blair, released new stickers she had created to raise money for her band, the Epidemic Saints. The merch is sweet and familiar: a yellow happy face sticker, with one eye represented by an oval and the other, a plus sign. I ordered a bunch, and when they arrived a few days later, I noticed the back: “here’s a sticker so everyone knows your [sic] Poz Friendly.” I turn the sticker over again, and get it: the plus sign is a wink of positive disclosure, a nod to positive people who may catch the visual nuance in public and possibly feel seen and welcome.
The music of the Epidemic Saints is grounded in the experience of people living with HIV. Their first single is entitled “The City of Otherly Love.” Their swag is then as good a response as any to the question of how to have an AIDS memorial in an epidemic: create situations around which people who care about the virus can gather, and from there share resources with people living with the virus. After all, if living well is the best revenge, maybe supporting people living with HIV is the best memorial. Memorial work can be that easy.