When does an epidemic become a ‘crisis’? Analogies between Covid-19 and HIV/AIDS in American public memory

Introduction: cultural memory in a moment of danger

This article critically interrogates historical analogies made between the AIDS epidemic and the Covid-19 pandemic that have emerged in American public discourse since the onset of the 2020 pandemic by tracing political fault lines they activated and the role of cultural memory and normative frameworks of ‘crisis’ in shaping collective responses. Michael Rothberg (2009) has written, in the context of globalizing Holocaust memory, that ‘comparisons, analogies, and other multidirectional invocations are an inevitable part of the struggle for justice’ and ‘an ethical vision based on commitment to uncovering historical relatedness and working through partial overlaps and conflicting claims that constitute the archives of memory and the terrain of politics’ (p. 29). This article situates the Covid-19 pandemic in such a multidirectional frame of the politics of memory by analysing its popular representation: the ‘usable pasts’ of earlier pandemics to some extent premediated social responses to Covid-19, while also anticipating strategies for memorializing its victims. Following Rothberg’s (2019) call for ‘differentiated solidarity’, this article develops cultural concepts, images, and tropes that bridge between different historical crises, while preserving their differences and particularities. It thus serves as a case study of the uses and abuses of analogies between historical crises.

The AIDS–Covid analogy is also multidirectional in another sense: it served not only to premediate possible trajectories of the Covid-19 pandemic, but also to remediate the history and memory of the AIDS epidemic in a more political light, often highlighting more important differences than similarities and thereby illuminating the nature of what we call ‘crisis’ and how it is collectively remembered. Debate about analogies with HIV/AIDS ultimately served to clarify the political stakes of the Covid-19 pandemic, raising the question of whose suffering and death is worthy of the label ‘crisis’, exposing differentials of power and access to healthcare, and illustrating the importance of contesting hegemonic representations of ‘crisis’ events.

The AIDS–Covid-19 analogy

In the midst of the AIDS crisis in America in 1988, Susan Sontag (1989) distinguished between ‘the epidemic we have and the pandemic we are promised’. In the gap between these two kinds of disasters, she wrote, ‘the imagination flounders’ (p. 90). Sontag’s (1965) earlier reflections on ‘the imagination of disaster’ had shown how cultural scripts often play down potential socio-political crises as they ‘normalize what is psychologically unbearable, thereby inuring us to it’. In the case of AIDS, the gap between the ‘unremitting banality’ of everyday disease and death and the ‘inconceivable terror’ of an uncontrolled pandemic, Sontag suggests, is mediated by unconscious collective fantasies. The present article elaborates how historical memory also fills this gap, premediating the collective experience of infectious disease and offering not only precedents, warnings and lessons, but also unconscious associations, comforts and fears.

At the time Sontag wrote these words in her 1988 article ‘AIDS and Its Metaphors’, the country reporting the highest number of AIDS cases was the United States. A generation later, in the spring of 2020, the same country found itself the epicentre of another health crisis, the Covid-19 pandemic. Once again in Sontag’s New York City, media showed corpses piling up in the hallways of hospitals and morgues. Michael Gottlieb, a physician who identified the first cluster of HIV cases in 1981, said in March 2020, ‘The apocalyptic scenes of New York City ICUs overwhelmed with people with Covid-19 pneumonia remind me of our early days where patients with AIDS presented very late with pneumocystis pneumonia and required ventilators’ (McClurg, 2020). New York City once again buried victims en masse on Hart Island in the Bronx, a site used since 1869 to bury the dead from plagues ranging from yellow fever, to tuberculosis, to AIDS, alongside the bodies of other poor, homeless and nameless people (Meier, 2020). During the AIDS epidemic, dying victims were often separated from their lovers and queer families, while medical decisions were made by estranged relatives, when victims were not disowned outright. Excluded from official mourning, friends and lovers of victims created their own memorial practices. During the Covid-19 pandemic, an inability to mourn was generalized, as deathbed visits and in-person mourning became restricted due to threat of contagion. At the time of writing, both pandemics have claimed roughly 700,000 American lives, and millions more internationally. The AIDS Coalition to Unleash Power (ACT UP) chant, ‘The AIDS crisis / knows no borders’, has been reprised for Covid-19 by global health groups advocating for expanded vaccine access.

As Covid-19 spread rapidly around the world in early 2020, many grasped for ‘usable pasts’ with which to orient the precarious present and uncertain future, resulting in striking analogies to historical epidemics (Catlin and Caomhánach, 2020). As the historian David Blight (2020) wrote, ‘We may need state-of-the-art new vaccines, but we also need old wisdom’. In times of crisis, when even experts and models can hardly see further than a few days into the future, we turn to history, theory, literature and art to equip ourselves with mental roadmaps, timelines and a horizon of possibilities – paths I explored with Benjamin P. Davis in the ‘archive of a crisis’, we curated in the early months of the pandemic (Catlin and Davis, 2020a, 2020b).

The most obvious precedent for Covid-19 was the ‘Spanish Flu’ pandemic of 1918. But despite being arguably the most similar case from an epidemiological and historical perspective, popular memory and understanding of that pandemic faded with time (Beach et al., 2020). That epidemic was a century ago, whereas the AIDS epidemic was evidently still present in the living memory of many American healthcare workers, political leaders and cultural critics who experienced it firsthand – much like living memory of severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS) shaped responses in many Asian countries (Tworek et al., 2020). A slew of articles in the American media written by historians, activists and HIV/AIDS survivors began proclaiming ‘lessons from the AIDS crisis’ for the current pandemic: ‘we need to unify’, ‘act fast and think big’, ‘acknowledge grief’, ‘help your neighbor’, ‘look for silver linings’ and so on (Butler, 2020b; Marhoefer, 2020; Shafer, 2020). By July 2020, a segment on the Covid-19/AIDS comparison appeared on NBC (2020) national news which noted that there were 770,000 global HIV/AIDS deaths in 2018 alone, nearly 40 years on. It ends by asking viewers a still-unanswered question, ‘with Covid-19, can we do better?’

The HIV/AIDS and Covid-19 pandemics differ in myriad respects: timelines, scale, contagiousness, populations affected, deadliness, among other factors. But as Alexander Chee observed, ‘This virus is not that virus. But this country is still that country’ (Chee, 2020). Thus gay writer Garth Greenwell (2020) noted in The New Yorker in April, 2020 that even as the facts differed, many ‘felt an eerie affective familiarity’ in the grief and uncertainty. Torie Osborn, who was executive director of the Los Angeles LGBT Center from 1988 to 1992, explained, ‘The first couple of weeks [of the Covid-19 pandemic], I was notably re-traumatized . . . I would have flashbacks to the height of AIDS. It was so connected in my psyche’ (Adler, 2021). The affective and imaginative nature of these resonances helps explain why so many critics, historians, and others isolating in their homes turned to fiction as a cultural archive, revisiting works from Daniel Defoe’s Plague Year (1722), to Camus’ The Plague (1947), to Philip Roth’s Nemesis (2010; Lepore, 2020). Greenwell reread Andrew Holleran’s (2008) columns on the AIDS epidemic from the early 1980s, collected in the book Ground Zero (1988) and later as Chronicle of a Plague, Revisited. Among Holleran’s timely observations was that despite the ‘particular queer sociality’ that brought suffering victims close to friends and lovers, ‘The plague fragmented, Balkanized, gay people. Either you were sick or well; Positive or Negative; in Act Up or home reading . . . some of us lived, others died’ (Greenwell, 2020; Holleran, 2008).

In a similar moment of uncertainty and distrust, many noted another salient throughline: medical expert ‘[Anthony] Fauci guided US through AIDS crisis, too. Survivors say it’s a roadmap for coronavirus’ (Plohetski, 2020). Similarly, Deborah Birx, a national leader in HIV immunology and global health since the 1980s, served as the Trump White House’s Coronavirus Response Coordinator (Holpuch, 2020). But while Fauci became a hero among American liberals for representing science, expertise, and reason in the face of denialism and xenophobia, his reputation regarding HIV/AIDS was far more ambivalent (Adler-Bell, 2021; Bernard, 2020). On the one hand, at the height of the AIDS crisis, he called upon the public to avoid ‘uncalled for discrimination’ (NBC) against those with AIDS. He ultimately befriended ACT UP organizers such as Peter Staley and praised Larry Kramer for his courage (West, 2020). On the other hand, he represented the status quo of the United States’s failing and unresponsive healthcare system. At the ACT UP demonstration that ‘stormed’ the National Institutes of Health (NIH) in May, 1990, protestors carried an effigy of his head on a stick and held signs proclaiming, ‘DR. FAUCI, YOU ARE KILLING US’ (BBC News, 2020).

Both epidemics began with denial, misinformation and failures of public health response that became associated with Fauci. ‘So instead of viewing Donald Trump’s daily barrage of fantasies and lies about the coronavirus epidemic as unprecedented and shocking’, wrote lesbian activist Amy Hoffman in April, 2020, ‘we should perhaps see it simply as business as usual’. Yet Covid-19’s rapid onset raised the stakes far more quickly. Reflecting on ‘Lessons we can – and can’t – apply from HIV/AIDS to COVID-19’, journalist Steven Thrasher (2020) noted a key difference in the speed and ease of transmission: ‘The rapid-fire spread of the COVID-19 virus has sparked faster political responses and swifter necropolitics – the power and capacity to dictate who may live and who must die – that can more quickly harm marginalized populations’.

A number of prominent HIV/AIDS survivors and activists were quick to cast doubt on the analogy. Larry Kramer, a co-founder of ACT UP New York, claimed his experience gave him no special insights about Covid-19 (Leland, 2020). Mark S. King (2020), an activist who became HIV-positive in 1985, condemned the analogy outright in a fiery March, 2020 polemic, entitled, ‘Stop comparing the response to coronavirus to the early response to AIDS. It’s insulting’:

No one cared about people dying of AIDS in the early years of the pandemic. The stock market didn’t budge. The president didn’t hold news conferences. Billions of dollars were not spent . . . In the early 1980s, AIDS was killing all the right people. Homosexuals and drug addicts and Black men and women. There is no comparison to a new viral outbreak that might kill people society actually values, like your grandmother and her friends in the nursing home.

The gay writer Edmund White (2020), who also tested positive for HIV in 1985, was prompted by the Covid-19 pandemic to tell an anecdote with a similar conclusion in April 2020:

I remember when I visited Paris in 1981 I told Michel Foucault, the French philosopher, about AIDS and he laughed at this American invention that seemed to target both gay men and Haitians. He said: ‘That’s too perfect, blacks and gays, only American racists and puritans would have come up with that delusion’. He died from the disease in 1984.

In another essay offering ‘lessons’ from the AIDS epidemic from April, Masha Gessen (2020b) noted a meme that circulated in March, featuring as a background the AIDS Memorial Quilt from 1987 (Figure 1).

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Figure 1.

Meme created by Cleve Jones, co-creator of the NAMES Project AIDS Memorial Quilt. Tweeted by @CleveJones1 (12 March 2020). Reproduced in The New Yorker (Gessen, 2020b).

Gessen lived through the AIDS crisis in New York City, reflecting, ‘In my early twenties, some weeks, I would go to several funerals. My roommate died. My other roommate died. All my mentors died . . .’. Gessen could not help, but see the Covid-19 pandemic through the prism of that traumatic experience. Yet Gessen and King’s analyses converge on rejecting direct analogy between the pandemics: unlike those suffering from Covid-19, AIDS patients were not simply neglected – they were considered worthy of ‘punishment’ for their promiscuity and sinful sex and vilified as criminals accused of sadistically spreading the virus to innocent victims. Amid tremendous stigma, many kept their diagnosis a secret at risk of losing friends, jobs and housing – what has been called ‘the second epidemic’ (Hollibaugh et al., 1987). As California congressman Henry Waxman said, ‘What society judged was not the severity of the disease but the social acceptability of the individuals affected with it’ (Shilts, 1987: 143–144). Hence, the national ‘poster child’ for AIDS, Ryan White, was not gay but haemophiliac, and his adult counterpart, Kimberly Bergalis, was purportedly infected by her dentist. Early coverage of the epidemic in the New York Times optimistically suggested that the ‘saturation’ of host gay and drug user populations with the virus – who would simply die out – might slow its spread among the general population (Boffey, 1985, 1986). Gessen concludes with a prediction derived from the AIDS crisis about the way Covid-19 will be remembered that seems apt in light of ‘Fauci-mania’ and the valorisation of healthcare workers who put themselves at risk and the scientists who developed vaccines: ‘We will romanticize the heroism and ingenuity of people who were betrayed by their government, rather than confront the people responsible for the betrayal’.

How an epidemic is responded to and remembered depends upon its social location. While AIDS was at first often referred to as a ‘gay plague’ or ‘gay cancer’, Keeanga-Yamahtta Taylor (2020) acidly called Covid-19 ‘the black plague’, calling attention to disproportionate rates of infection and death among people of colour owing to poor access to healthcare, pre-existing conditions, poverty, working in ‘essential’ services, mass incarceration and sheer neglect. A year into the pandemic, mortality for Blacks, Hispanics, and Native Americans was more than two to three times as high as that of whites (APM Research Lab, 2021). A pandemic can serve as an apocalypse – from the Greek for revelation – throwing existing social fault lines into sharp relief. As Larry Kramer (2015) once wrote, ‘Show me a plague, and I’ll show you the world!’ (p. 27).

Theorist Judith Butler (2020a) claimed early on in the pandemic that ‘the virus does not discriminate. We could say that it treats us equally, puts us equally at risk of falling ill, losing someone close, living in a world of imminent threat’. On one hand, there was indeed a degree of universality to the experience of Covid-19. The virus was highly transmissible across races, classes, and borders, and much of the world went into lockdown in tandem. As Mark Schoofs (2020) wrote in his March, 2020 piece, ‘How To Survive Yet Another Plague’, ‘This fact gives each of us tremendous leverage, much more than any AIDS activist ever had’. As Gessen (2020b) rephrased this perverse lesson, ‘act as if you are infected; the government will not save you; everyone is at risk – and this is our best hope’. The ethical thrust of Butler’s piece was to highlight the potential solidarities that could grow out of this universal vulnerability. Yet in its real social impacts, the virus in fact discriminated severely, challenging Butler’s universalistic ethical vision. While new solidarities and synchronicities did emerge, as seen in ritualized cheers for essential workers (Erll, 2020), they were countered by anti-lockdown protestors who proclaimed, ‘My Life, My Death, My Choice, Personal Responsibility’ (Villarosa, 2020).

Despite the persistent trauma of AIDS for queer communities, Sean Monahan (2020) reflected on some positive lessons in his May 2020 piece, ‘What gay men can teach us about surviving the coronavirus’. After the AIDS epidemic, he says, routine sexually transmitted infections (STI) testing and sharing one’s status became ordinary rituals of gay life. Many called for avoiding the stigmatizing approach of ‘Covid absolutism’ reminiscent of ineffective calls for abstinence in the AIDS epidemic (Leonhardt, 2021; Schwartz, 2021). In 2020, when the New York City Health Department recommended ‘video dates, sexting, or chat rooms’ as socially distanced forms of sex during quarantine, some recalled Richard Berkowitz and Michael Callen’s 1983 pamphlet ‘How to Have Sex in an Epidemic: One Approach’, which advocated safer sex practices (Linds, 2020). It was only some years later, in 1987, that Douglas Crimp could proclaim, ‘we are now reclaiming our subjectivities, our communities, our culture . . . and our promiscuous love of sex’ (p. 270).

The elevation of the HIV/AIDS epidemic to the status of a ‘crisis’ was achieved in large part due to ACT UP, a broad coalition of existing and new activist organizations, HIV-positive individuals, queer allies and some family members that formed in 1987 in New York City as a self-proclaimed ‘diverse, non-partisan group of individuals, united in anger and committed to direct action to end the AIDS crisis’ (Schulman, 2021). ACT UP took to the streets and orchestrated theatrical protests designed to generate public attention which ultimately forced the obstinate US government to act: drowning out the opening bell of the New York Stock Exchange to protest specific pharmaceutical companies charging exorbitant prices for medications, shutting down the FDA over its inaction and exclusionary drug trial rules (women were at first ineligible), staging die-ins in packed churches and in busy plazas while covered in fake blood, and throwing ashes of the dead onto the White House lawn (Figure 2).

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Figure 2.

Flyer for an ACT UP Political Funeral held 11 October 1992. Courtesy of ACTUPNY.org.

At a time when, as Crimp (1989) wrote, ‘the dominant media still pictures us only as wasting deathbed victims’ (p. 16), ACT UP offered powerful counter-images to the ‘morbid identification’ of imagining homosexuals as ‘already dead’ (Nunokawa, 1991: 1).

The gay artist David Wojnarowicz, a member of ACT UP who chronicled his experience with the virus before own death in 1992, protested government inaction with an iconic jacket (Figure 3).

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Figure 3.

Jacket worn by David Wojnarowicz in 1988. Mask by ACT UP New York and Housing Works. Tweeted by ACT UP NY @actupny (23 March 2020).

In March 2020, the Twitter account of ACT UP New York reprised this photo alongside one of a face mask emblazoned: ‘IF I DIE OF COVID-19 – FORGET BURIAL – DROP MY BODY ON THE STEPS OF MAR-A-LAGO’, Donald Trump’s Florida resort (Renfro, 2020). This act of borrowing from the archive of past crises exemplifies the twin processes of mnemonic premediation and remediation, in which cultural elements and scripts from the past shape discourse and action in the present, and vice versa (Erll and Rigney, 2009). In 2020, ACT UP reactivated the political logic of its old slogan – dramatic protest against government negligence – by inscribing it onto an icon of Covid-19, the face mask. Similar borrowings could be observed in the updating of ‘Silence = Death’ to ‘Trump = Death’ in a meme that circulated on Instagram (Figure 4).

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Figure 4.

Silence = Death poster (1987). Trump = Death meme created by Instagram user @RAWdickulous (31 March 2020).

Similarly, the 1987 ‘AIDSGATE’ poster, the second creation of the ‘Silence = Death Project’, was revived in a ‘COVIDGATE’ poster, created by a current member of ACT UP, which replaced Reagan with Trump as the culprit behind the political scandal of government inaction and neglect (Figure 5).

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Figure 5.

AIDSGATE poster (1987), Silence = Death Project (National Museum of American History). COVIDGATE remake created by Ivy Kwan Arce circulated on ACT UP NY Twitter (17 May 2020).

Such cultural borrowings, I argue, do not entail a direct historical analogy, but rather a message about bio- and necropolitics – the power over life and death – being shared across generations of queer health activists. HIV/AIDS activists could thus at the same time vehemently reject direct analogy between the pandemics while also hosting the ACT UP webinar of 22 April 2020 titled, ‘Are you ready to ACT UP? Lessons learned from HIV to fight Covid’.

Given its decades of collective experience with politically targeted actions around healthcare, ACT UP has subsequently continued to organize for Covid along lines familiar to its struggle against HIV/AIDS: better information, expanded healthcare and removing high costs and patents to expand global access to treatment. Thus, at the ACT UP for Health Fair at the 2021 New York Queer Liberation March, one could pick up both free condoms and free face masks, and get vaccinated for Covid-19 while getting tested for HIV (Figure 6).

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Figure 6.

ACT UP NY. Facebook post (27 June 2021).

The AIDS–Holocaust analogy

The iconographic borrowing in the image of Wojnarowicz’s jacket in fact goes back even further: The pink triangle that forms the background for the text, the famous symbol of ACT UP and the 1987 campaign ‘SILENCE = DEATH’, was a version of the upside-down pink triangle used by the Nazis to label homosexuals in concentration camps and then reclaimed by gay activists from West Germany to San Francisco in the mid-1970s (Jensen, 2002: 326–327). Amid calls from conservatives such as William F. Buckley in 1986 for people with AIDS be tattooed as a public warning to others, the American-Jewish artist Avram Finkelstein co-created this campaign in 1986–1987 to raise alarm about the stigma facing people with AIDS. As he later reflected, ‘The Holocaust references were obvious’ (Ivry, 2018). He gave the triangle a ‘makeover’ by updating its colour to bright fuchsia and inverting the triangle into an upright, more empowering stance – a ‘gesture of reinvention that was inadvertent but worked out in our favor’ (pp. 44–45). He wrote that ‘Many aspects of the AIDS crisis were comparable’ with the Holocaust, but that ‘the Holocaust metaphor . . . also had its conceptual flaws’ (p. 80). That did not stop ACT UP from deploying it in front of half a million New Yorkers in the group’s first Pride March in 1987 by building a concentration camp-themed float with Ronald Reagan in the guard tower (Figure 7).

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Figure 7.

ACT UP float in the 1987 New York City Pride March. Photograph courtesy of the Avram Finkelstein Archive.

Finkelstein reflected, ‘As messy as it looked to me that day, during the march the concentration camp felt powerful, confrontational, and a little frightening’ (p. 75).

ACT UP leader Larry Kramer (1989), who also had a Jewish background, was explicit about the importance of this connection as early as 1981, even going so far as to call his account of the AIDS crisis Reports from the Holocaust (Goshert, 2005: 52). Kramer (1989) wrote in 1987:

AIDS is our holocaust. Tens of thousands of our precious men are dying. Soon it will be hundreds of thousands. AIDS is our holocaust and Reagan is our Hitler. New York City is our Auschwitz. (p. 173)

Kramer’s (1989) inflammatory analogy did not concern the means or scale of death, but rather the conditions in which mass death becomes tolerated: ‘Holocausts can occur’, he wrote, ‘and probably most often do occur, because of inaction’ (p. 265). In his view, this complicity tarred not only the US government, but also the press: ‘we must not forget the shameful silence of the [Village] Voice [regarding AIDS], as we must not forget the shameful silence of The New York Times for not writing about the Final Solution when it happened’ (p. 97). In an interview with Gregg Drinkwater, Kramer even claimed his activism was partly inspired by Hannah Arendt’s Jewish politics:

When AIDS came along and gays were not mobilizing in any sufficient way, she was very helpful with what she said about the Jews at that time – that they should have their own army, for instance, which is what I looked upon ACT UP as being. (Gessen, 2020)

This is a stance Queer Nation, a militant offshoot of ACT UP, made explicit. The novels of ACT UP member Sarah Schulman also illustrate how an intergenerational, ‘untranslatable Jewish history’ of the camps cropped up in encounters with AIDS in the 1980s (Goshert, 2005). However, despite these analogies and continuities of familial trauma, Kramer (1989) and Schulman (2009) both stress a particularly ‘horrible singularity of the gay situation’ in familial homophobia: ‘Can Jews imagine being hated by their parents for their Jewishness?’ (p. 232).

Others have challenged such polemical comparisons. David Caron (2010) has criticized the way AIDS victim Hervé Guibert compared his body with that of an inmate in Auschwitz, arguing that it perpetuated false universalizing narratives about the Holocaust that trivialize the persecution of Jews. Susan Sontag, for her part, said, ‘It’s wrong to compare a situation in which there was real culpability to one in which there is none. And that’s where the analogy leads. The word [Holocaust], like the word genocide, should not be used metaphorically’ (Shnayerson, 2013). Kramer (1989) himself wrote in 1987, ‘I know that straight Jews, and other heterosexuals, find this comparison of holocausts repugnant’, but he was outraged that

When I say that I have lost some five hundred acquaintances and friends over the past seven years, I have been told point-blank by straight Jewish people that ‘their’ extermination is the only ‘holy’ one; ours, by contrast, is piddling. (p. 263)

John Charles Goshert (2005) reminds us that Kramer was an activist and his goal was to spur action to address AIDS. Hence, some of Kramer’s analogies can be understood as akin to the repurposing of the Nazi iconography of the pink triangle, ‘perhaps an intentionally dangerous, provocative mixing of metaphors that is, simultaneously, absolutely perverse and, even in that perversion, critically relevant’ (p. 70).

The point is that even in cases where the content of a historical analogy may not stand up to moral or historical scrutiny, affective resonances and political lessons sometimes still can – and this matters because, as Deborah B. Gould (2009) has shown, successful political movements like ACT UP are often driven by historically-inflected emotions ranging from pride, to shame, to indignation. Sarah Schulman reflected on the pandemic in April 2020, ‘The similarity is that we also have a monstrous federal government today’ (Tensley, 2020). But, she went on,

At its height, the AIDS crisis was very different from what we’re experiencing now. That’s because hatred for people with HIV dominated public policy and social attitudes. The AIDS crisis should’ve been met with collective energy. There should’ve been updates every night in the media. There should’ve been governors speaking out against federal-level indifference. There should’ve been cooperation to try to limit illness and suffering. But none of that took place. People with HIV/AIDS were scorned and punished and excluded. In addition, no one has ever been made accountable for the 600,000 American deaths during the AIDS crisis. (Tensley, 2020)

The HIV/AIDS epidemic in America revealed that the shame and stigma associated with a disease and how it is contracted are a matter of life and death. For activists like Schulman, the chief ‘lesson’ from the AIDS epidemic for confronting future epidemics is that suffering and death matter when they are made to matter, and they are made to matter only once they are understood to threaten the ‘general population’ and implicate political authorities.

Relatedly, historian Heather Murray (2020) has traced how masks turned from a sign of bigotry into a sign of care, citing a July 1983 issue of evangelical pastor Jerry Falwell Sr.’s newsletter Moral Majority Report featuring a family of four wearing medical masks, with the caption, ‘Homosexual Diseases Threaten American Families’ (Figure 8).

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Figure 8.

Image from the cover of Moral Majority Report (July 1983). Source: Jerry Falwell Library, Liberty University.

Allan Brandt (1988) similarly captures this atmosphere of fear by quoting coverage of AIDS in Life from 1985: ‘Suddenly a lot of people fear that they and their families might suddenly catch some mysterious, fatal illness which until now has been confined to society’s social outcasts’ (p. 428). Such conservative messaging lends truth to Sontag’s reflection from 1988 that ‘AIDS occupies such a large part in our awareness because of what it has been taken to represent. It seems the very model of all the catastrophes privileged populations feel await them’ (p. 84). Even though in the 1980s, AIDS was in fact still relatively localized to particular minority social groups, it was not the actual suffering those (presumed guilty) affected groups, but rather the imagined threat to the (presumed innocent) ‘moral majority’ that received attention and sympathy. The potential generalizability of that threat is what distinguishes the private suffering of noncontagious disease from the crisis of a contagious pandemic.

The context for these stigmatizing approaches was ignorance and fear. Activist Michael Weinstein reflected that for him the key similarity between the two epidemics is that in 1981–1982, ‘there were so many unknowns’, which ‘fuels the fear and uncertainty’ (Williams, 2020). Brandt observed in 1988 that ‘AIDS has threatened our sense of medical security’ – the public’s ability to trust experts, which was once again thrown into question by Covid-19 (p. 425). But ACT UP developed a novel solution to this problem. As ACT UP leader Mark Harrington explained the organization’s philosophy, ‘We have to break down the cult of the expert in every area of this society. The people with AIDS are the experts on this disease’. ¹

Two of ACT UP’s lasting achievements were to turn confusion and ignorance about AIDS into potentially life-saving knowledge and to transform pervasive fear surrounding AIDS into action rather than stigma. The difference between two activist slogans of the time attests to the political work ACT UP accomplished. On one hand, the 1989 ‘Kissing Doesn’t Kill’ campaign by the Gran Fury collective and the ACT UP New York propaganda wing asserted in corporate-style public service messaging on the side of busses and a video commercial, ‘CORPORATE GREED, GOVERNMENT INACTION, AND PUBLIC INDIFFERENCE MAKE AIDS A POLITICAL CRISIS’ (Heller, 2012; Figures 9 and 10).

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Figure 9.

‘Kissing Doesn’t Kill’ campaign poster by the Gran Fury collective (1989). Image courtesy of the New York Public Library and ACT UP.

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Figure 10.

From the ‘Kissing Doesn’t Kill’ campaign by the Gran Fury collective. Clip in United in Anger: A History of ACT UP, directed by Jim Hubbard (2012).

This campaign drew public attention to the evident failure of government response, to the objective crisis manifesting in mass death. At the same time, AIDS was an ignored crisis or a non-crisis, and ACT UP’s propaganda aimed to make AIDS a true crisis. As one activist at ACT UP’s first Food and Drug Administration (FDA) action said to the press while being arrested, ‘We’re here because this government has the resources to deal with the AIDS epidemic and they won’t do it unless we force them’ (France, 2012). The mission of the ACT UP propaganda wing was to close the gap between the AIDS crisis already being a crisis and having to make the public see it as a crisis. Just as the affirmation ‘Black Lives Matter’ came in response to the evident devaluation of Black life, such slogans assert, performatively, society as it ought to be, while protesting the inaction and injustice that leaves that condition yet unrealized (Butler, 2015).

When does mass death become a ‘crisis’?

‘We die, they do nothing!’ – Slogan from ACT UP action at the CDC, 8–9 January 1990. ²

Achieving the designation ‘crisis’ depends upon existing social hierarchies, power structures, access to resources, and visibility in political arenas. As Lauren Berlant (2018) has said, glossing Jacques Rancière and Jean-François Lyotard, ‘politics is constituted by a disagreement about whose representation of the event will secure protocols and resources for valuing some claims and grievances over others’. The work of the political scientist Dara Z. Strolovitch bears out this claim. Her work on the 2007–2008 financial crisis shows how government actors and publics, influenced by hierarchies of race, class and gender, have a tendency to naturalize some suffering as inevitable or even deserved and justified, while intervening in other cases. Hence some suffering can be ignored as what Strolovitch (2013) calls ‘non-crisis’ while other suffering – especially when it affects hegemonic groups – is deemed ‘crisis-worthy’ and deserving of state intervention (p. 172). Strolovitch (2020, 2022) thus provocatively defines crisis as ‘when bad things happen to privileged people’. This framework raises a number of questions: Crisis for whom? Whose lives matter? Whose lives are grievable? (Butler, 2009). In this light, Mark King’s cutting rejection of the popular, depoliticized AIDS–Covid analogy highlights the way AIDS was for years a non-crisis, ignored and justified as suffering and death deemed unworthy of state intervention. The rhetorical framing of crisis matters because it enables certain social and political responses while closing off others (Roitman, 2013).

Charles Rosenberg (1989) argued in his 1989 article, ‘What Is an Epidemic? AIDS in Historical Perspective’, that epidemics are social ‘events’ with ‘a dramaturgic form’ (p. 2). Unlike slow trends to be retroactively excavated by historians, epidemics elicit ‘immediate and widespread response’ (p. 2). Drawing upon Camus’s 1947 novel The Plague, Rosenberg wrote, epidemics ‘follow a plot line of increasing and revelatory tension, move to a crisis of individual and collective character’ that mobilizes ‘communities to act out proprietary rituals that incorporate and reaffirm fundamental social values and modes of understanding’ (p. 2). Whereas AIDS was ‘surreptitious and idiosyncratic’, slow-moving disease and difficult to detect, cholera, for example, caused ‘melodramatic’ symptoms that could be fatal within hours of infection (Catlin and Caomhánach, 2020). Hence outbreaks like cholera become events – ‘a signal’ – while others like tuberculosis that killed many more people often remained ‘background noise’. Only dramatic epidemics ‘questioned society in every dimension’ and challenged reigning authorities. Despite early denialism about Covid-19 and the threat it posed, especially on the political right, it undoubtedly was such a dramatic and ‘crisis-worthy’ event. Official responses were severe, if not always timely or effective: closed borders, strict quarantines, and virtually unprecedented (outside of wartime) restrictions on commerce and civil society.

As Rosenberg noted, the AIDS epidemic was a very different kind of public health event with a distinctly slower temporality than Covid-19 – not least because digital media has accelerated the news cycle. In the case of AIDS, it took years of activism and thousands of deaths for the epidemic to be considered a ‘crisis’ worthy of state intervention. Health officials in the United States first became aware of AIDS – then often referred to by the problematic name GRID (gay-related immune deficiency) in the summer of 1981. Notoriously, America’s Republican President Ronald Regan did not publicly mention AIDS until 4 years into the epidemic, in a press conference on 17 September 1985. ³ By that time, AIDS had claimed over 10,000 lives – not only gay men, but also Haitians, haemophiliac populations reliant on blood transfusions, sex workers, injection drug users and others. Still, AIDS remained a ‘concentrated’ rather than ‘generalized’ epidemic (Snowden, 2019: 429). On 2 October 1985, 2 weeks after Reagan first mentioned AIDS and called it a ‘top priority’, congress authorized US$190 million for AIDS research. This was the first moment of ‘crisis’, conceived as state recognition and intervention. That same day, actor Rock Hudson died of AIDS, providing the first relatable case for many Americans. Basketball star Magic Johnson, announcing that he was HIV-positive in 1991, similarly warned the public, ‘It can happen to anybody, even me’ (Snowden, 2019: 441).

However, when Reagan delivered his first full speech about AIDS on 1 April 1987, it was mostly to preach abstinence education and bemoan the lack of ‘values of right and wrong’ (ABC News, 1987). By the time Reagan left office, nearly 90,000 Americans had died from AIDS and his administration had done woefully little to stop the spread of the virus and assist victims. A political funeral held in Washington, DC, for Tim Bailey, who died in 1993, featured a procession holding a banner declaring that he had ‘DIED OF AIDS COMPLICATIONS: GOVERNMENT NEGLECT, GREED AND INDIFFERENCE’ (Hubbard and Schulman, 2012; Figure 11).

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Figure 11.

Still from United in Anger: A History of ACT UP (2012), directed by Jim Hubbard.

In 1987, AZT became the first drug approved by the FDA to treat AIDS, but it did not prevent death: in the large doses prescribed it caused toxic overdose. Moreover, it was expensive and inaccessible to many. The first genuinely life-saving anti-retroviral drug cocktail (HAART) became widely available in the United States in 1996. By that point, over 300,000 Americans had died. In the year of peak deaths, 1995, over 50,000 individuals in America died from AIDS. Too little was done too late. Walt Odets (2019), a psychologist who observed the epidemic, wrote, ‘Stigma had triumphed, and the death toll of young gay men was the fruit of its labor’.

The AIDS epidemic has been long and painful – indeed, it is still ongoing within the United States. By 2003, the prevalence rate of HIV among African Americans reached 5%, comparable with levels in parts of Africa and well over the 1% standard threshold for a ‘generalized severe epidemic’ (Snowden, 2019: 442). Journalist Linda Villarosa’s reporting on ‘America’s Hidden H.I.V. Epidemic’ exposed the ongoing crisis of preventable deaths among American men of colour who have sex with men, particularly in the rural South. Poverty, mass incarceration, and unequal access to treatment and prophylactic drugs have exacerbated these inequalities. Villarosa (2020) has since highlighted similar racial disparities for Covid-19. Asked what lessons we can and cannot apply from HIV/AIDS to Covid-19 in April 2020, Steven Thrasher issued a dire warning for the world’s ‘viral underclass’, if Covid-19 is met with the same inadequate response as AIDS: ‘The AIDS pandemic is not in the past’, he said. ‘In 2015, the incidence of AIDS cases per 100,000 people was as high for black people living in America than it ever was for white people’. ‘Medications for HIV have been around since the 1990s, but have not been economically accessible to all’, he added. The stigma associated with AIDS also persists. The United States only lifted its ban on HIV-positive immigrants in 2009.

For such acutely affected groups in the United States and around the world, the AIDS epidemic is still experienced as a ‘crisis’, yet most Americans – even within queer communities – may not conceive of AIDS as a crisis. Fitting with Rosenberg’s conception of epidemics as dramatic events, crises have spatiotemporal bounds that stretch the limits of collective attention spans. Answering the question as to whether or when the AIDS crisis ‘ended’ returns us to the question, Crisis for whom? The simplest answer is that AIDS and HIV-related deaths in the United States plummeted by two-thirds in just 2 years between their peak in 1995 and when new drugs came out and the number of deaths stabilized in 1997. Andrew Sullivan (1996), who tested positive in 1993, proclaimed the ‘end’ of the AIDS ‘plague’ in the New York Times Magazine in November, 1996. Medical doctor Raphael Campo (1999) published his less triumphalist ‘Elegy for the AIDS Virus’ in 1999. But, as Gabriel Rotello (2011) responded to Sullivan’s ‘continuous ‘end of AIDS’ crap’, 1996 was simply the year Sullivan’s ‘own personal plague ended’ as someone with privileged access to life-saving treatment. In reality, the crisis had not so much ended as shifted to new populations. In November 2019, New York City’s Department of Health reported, ‘New H.I.V. Diagnoses Fall to Historic Lows’ – yet 1 month later, the New York Times reported that ‘H.I.V. Is Coming to Rural America’ and that it ‘is not ready for the coming crisis’ (Thrasher, 2019). Forty-two percent of new HIV infections in the United States in 2019 were among African Americans, who make up just 13% of the population but are disproportionately affected by incarceration, poverty and lack of access to medical care (Royles, 2021). Globally, the HIV/AIDS crisis continues, causing nearly 700,000 deaths each year. The 2012 documentary How to Survive a Plague ends with the fact that four people around the world die preventable deaths from AIDS every minute because they cannot afford life-saving medication. Such figures led Dan Royles (2021) to ask in The Washington Post, ‘AIDS disappeared from public view without ending. Will Covid-19 do the same?’.

The concept of ‘crisis’ comes from the ancient Greek verb for ‘to decide’ and was originally employed in the medical context to describe the period of uncertainty about whether a patient would live or die (Koselleck, 2006). After the advent of effective treatment for AIDS in 1996, there was far less uncertainty about the disease itself: much more was known about its transmission, testing was more widely available and practised among the originally affected groups, and those with sufficient resources could gain access to life-saving drugs. The sense of crisis waned accordingly. But what about the remaining hundreds of thousands of deaths that continued in subsequent years despite the crisis being ‘decided’ in the direction of ‘life’?

The history of the AIDS epidemic in the United States reveals how the end of a deadly crisis for one group was the beginning of an ignored non-crisis for another. The dramatic ‘event’ of the first phase of the AIDS epidemic centred on gay men gave way to more banal ‘slow violence’ (Nixon, 2011) affecting others and lends truth to Scott Knowles’s (2021) claim that ‘poverty is the slowest disaster’ of all. If we apply a more expanded temporal frame back onto HIV/AIDS, it reveals a remarkably longer time-scale than the commonly accepted ‘crisis’ period of 1981–1996/1997. In fact, genetic research has traced the virus in humans back as far as sites in Africa in the 1930s and to New York by around 1970 (Snowden, 2019). This timescale of decades greatly expands our understanding of how epidemics actually work, while challenging conventional conceptions of the AIDS epidemic as a bounded ‘event’ with a clear beginning, middle and end. The Covid-19 pandemic has a much tighter timeline, but it, too, continues to expand. The World Health Organization (WHO, 2021) found that the virus was in circulation in Wuhan, China in November 2019, and perhaps as early as September, before it exploded in hotspots in December. In both cases, asymptomatic latency periods extend the temporality of the outbreaks and challenges conventional understandings of crisis, which rely on temporal proximity between cause and effect. Astrid Erll (2020) has reflected on ways that Covid-19 destabilized linear notions of time and activated new temporal frameworks. While time seemed to stand still for those quarantined in their homes and isolated from the outside world, anyone on the Internet was overwhelmed by a glut of case numbers and reports about the virus streaming in from around the world. However, at the same time as the pandemic ‘engenders a sense of global simultaneity’ through the Internet, it also exacerbates inequalities and asynchronies (p. 863).

Reinhart Koselleck (2002, 2018) developed Ernst Bloch’s notion of the ‘nonsimultaneity of the simultaneous’ as well as ‘layers’ or ‘sediments’ of time, which overlap and pile up. But, more precisely, the pandemic illustrated ‘chronocenosis’, a concept which captures not only ‘the multiplicity but also the conflict of temporal regimes operating in any given moment’ (Edelstein et al., 2020: 4). While political regimes pursue continuity, even eternity, to legitimate and perpetuate their rule, other, conflictual temporalities, such as the sudden declaration of ‘crisis’ or ‘state of emergency’ can be deployed in the service of that stability (p. 7). Chronocenosis was visible in the responses of many governments to the outbreak of the virus. In the case of American leadership, the early ‘emergency’ act of barring travel from China was coupled with contradictory reassurances from President Trump that the virus was ‘just the flu’ and businesses and schools would ‘reopen by Easter’. At the same time, some of the same individuals who issued false reassurances to the public sold off personal investments and began planning one of the greatest mobilizations of medical, economic, logistical and technological ever seen in Western societies outside of wartime. European leaders Emmanuel Macron and Boris Johnson declared their nations ‘at war’ with the virus, and scholars debated the usefulness of this analogy for mobilizing against an invisible enemy (Mulder, 2020). Others have narrated America’s death toll of over 600,000 as being larger than all war deaths in the twentieth century combined, or, on its worst single days, more than the 11 September 2001 terror attacks. Such analogies ring alarm bells: If a 9/11 is happening every day, should not more be done? But comparisons can also be made in the other direction: Globally, the ‘Spanish’ Flu of 1918 killed upwards of 50–100 million people, young and old, and on a much less crowded planet, and most of those deaths were compressed into a short four-month period (Honigsbaum, 2018).

The rhetorical temporalization of Covid-19 was coupled with its rhetorical spatialization. The use of discriminatory names for the virus like ‘China virus’ and ‘kung flu’, and the closing of borders played out along existing xenophobic and nationalistic lines. As Sontag (1989) wrote, ‘One feature of the usual script for plague: the disease invariably comes from somewhere else . . . there is a link between imagining disease and imagining foreignness’ (p. 48). Popular obsession and conspiracy theories surrounding the origin of the Coronavirus echoed the legend of a lone gay flight attendant Gaëtan Dugas who was popularly held to be ‘patient zero’ in the AIDS epidemic (McKay, 2014). ‘Without a doubt’, one critic rightly exclaimed in April 2020, ‘coronavirus has already become a myth!’ (Kılıç, 2020). In reality, as Sontag (1989) wrote, ‘The AIDS crisis is evidence of a world in which nothing important is regional, local, limited; in which everything that can circulate does, and every problem is, or is destined to become, worldwide’ (p. 92). Yet in wealthy, developed nations where Covid-19 vaccines have been made widely available, ‘crisis’ may well be over and ‘normality’ restored long before this is the case in less privileged parts of the world. Whereas the temporality of the most acute phase of the pandemic was contained to about a year in some countries with access to vaccines, it may well be years in others. The spatiotemporal framing of the Covid-19 pandemic will also shape whether and how it is remembered and memorialized.

Pandemics and historical amnesia

The ripple of shock and surprise Covid-19 sent around the world corresponded to amnesia about past pandemics, with the exception of East Asian societies that had confronted other coronavirus threats in recent decades. ‘Why do we forget pandemics?’ asked Nina Burleigh (2021), observing that

Donald Trump’s grandfather’s death from the Spanish flu in 1919 changed the fortunes of his family forever, yet Trump never spoke of it – even while confronting a similar natural disaster. Such a forgetting wasn’t just Trumpian aberrance; it was a cultural phenomenon.

This is notable not just because of the 1918 pandemic’s vast scale, but because the deaths it caused were so swift, bloody and dramatic. In addition, both pandemics were followed a summer of significant racial uprisings in many American cities (Ortiz, 2020). The anthropologist Martha Lincoln invokes the American ‘tendency to look forward – and away from disaster’ as part of ‘the way we’re conditioned to remember history . . . Even though American history is full of painful losses, we don’t take them in’ (Burleigh, 2021).

Jonathan Freedland (2020) offers an alternative explanation. ‘History suggests we may forget the [Covid-19] pandemic sooner than we think’, he says, since it lacks the AIDS epidemic’s targeting of identifiable minority groups: ‘There is a moral story to be told about that first phase of the disease, a story of prejudice, bigotry and shame’. Lacking such a focussed target, the 1918 pandemic ‘did not become a vehicle for stigma or a motor for outrage’ (Honigsbaum, 2018). Historian Laura Spinney has similarly reflected that while we are practised in the collective memory of war, we tend to remember pandemic victims individually rather than collectively, ‘Not as a historical disaster, but as millions of discrete, private tragedies’ (Freedland, 2021; Figure 12).

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Figure 12.

From the 1992 film, Voices from the Front, the first feature-length documentary on AIDS activism in America, directed by Sandra Elgear, Robyn Hutt and David Meieran. Clip reproduced in United in Anger: A History of ACT UP (2012), directed by Jim Hubbard.

Indeed, AIDS victims long lacked collective recognition. When US AIDS deaths hit 100,000 on 25 January 1991, the New York Times buried the story on page A18 (AP, 1991). But when US deaths from Covid-10 hit 100,000 on 24 May 2020, the Times ran on its cover the names of victims and the caption, ‘They were not simply names on a list. They were us’. While they may not have impacted policy, such memorial efforts matter because, as Erll draws from Koselleck, ‘what is remembered in culture constitutes the space of experience, which in turn shapes what can be imagined as possible futures, the “horizon of expectation”’ (p. 864). Pandemics have evidently often not been sufficiently remediated in cultural memory to become ‘a premediating force in the present’ and illuminate possible futures and courses of action.

Of course, not all had forgotten past pandemics. Bill Gates’s global health network had been researching pandemic risks and developing vaccines for years. Leftist intellectual Mike Davis (2005) warned of the risk of a deadly global flu in his 2005 book, The Monster at Our Door: The Global Threat of Avian Flu, which was republished in Davis (2020) as The Monster Enters: Covid-19, Avian Flu, and the Plagues of Capitalism, in which he declared that ‘we are now in the age of pandemics’. Sociologist Zeynep Tufekci has similarly called Covid-19 ‘a starter pandemic’ (Yong, 2020). Andreas Malm’s (2020) Corona, Climate, Chronic Emergency (2020) links consumption and deforestation with heightened pandemic risk as we continue to destabilize ecosystems and come into closer contact with other species. As Erll has reflected, ‘Human-viral temporality is thus roughly equal to Anthropocene time, and current pandemics seem to share many causes with climate change and mass extinction’ (p. 868). Historian of science Kate Brown (2020) noted in her piece, ‘The Pandemic is not a Natural Disaster’ – it is a social and ecological one – that ‘the misnamed Spanish flu of 1918 most likely emerged on Kansas farms, where people, animals, and birds lived in close quarters’. ⁴ She warns that similar transmissions linked to industrial animal husbandry will sustain pandemic risks for the foreseeable future. As a United Nation (UN) agency predicted in October 2020, ‘future pandemics will emerge more often, spread more rapidly, do more damage to the world economy, and kill more people than Covid-19, unless there is a transformative change in the global approach to dealing with infectious diseases’ (Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services (IPBES), 2020).

If, indeed, the latent threat of future pandemics persists as a ‘chronic emergency’, how will societies mobilize the memory and lessons of past pandemics if they have been framed and remembered as isolated events? Even Erll’s (2020) insightful article on ‘Memory worlds in times of Corona’ at points reproduces some misleading views by describing the Covid-19 pandemic as a ‘natural disaster’ and a discrete ‘event’. Memory studies would benefit from undergoing a gestalt shift towards seeing pandemics – like other ‘unnatural disasters’ – as ‘processes’ rather than ‘events’ (Knowles, 2011: 216; 2020). This would entail denaturalizing, broadening, and slowing down our understanding of pandemic ‘crisis’ as others have done for ecological crisis, while also using the history of HIV/AIDS to differentiate and politicize the notion of crisis, asking, Crisis for whom? Public health experts have long adopted such a synoptic view, but a gap remains between this and the popular narratives that drive social and political responses. Popular memory may continue to ‘eventalise’ pandemics around dramatic moments. However, it is the task of social scientists and critics alike to articulate historical processes that may be slower and less easily narrated. Storytelling and cultural memory have a role to play in bridging that gap and steering popular consciousness towards recognizing latent threats worthy of our collective attention.

Susan Sontag and the multidirectional memory of illness

As one model for advancing understanding of the interrelated and processual nature of crises, I develop a possibility I draw from the writings of Susan Sontag (1933–2004): cultivating explicitly ‘multidirectional’ memories and transposable lessons between pandemics and other crises. I first turned to Sontag’s (1986) work from lockdown in Berlin in the spring of 2020 thanks to a broadcast suggesting the timeliness of her short story, ‘The Way We Live Now’, which was published to acclaim in The New Yorker in November, 1986 (Löffler, 2020). The story is widely hailed as an important literary account of the AIDS crisis, yet it does not mention any disease by name. Some have speculated about one reason for this: though Sontag (2009) was bisexual – at age 26, she referred to herself in her diary as ‘queer’ – she did not come out until late in life and for decades avoided explicit identification with queer issues (Malcolm, 2019; Moser, 2019). Still, Sontag’s son reports that his mother watched three of her closest friends die in New York AIDS wards (Rieff, 2008). Sontag claimed in a 1989 interview with Kenny Fries that she started writing the story ‘very quickly’ the night she learned that a close friend had been diagnosed with AIDS – perhaps the artist Paul Thek, who would die of AIDS the next year, and to whose memory AIDS and Its Metaphors is dedicated. Sontag told Fries (1989) that she did not wish to write another book about illness but that privately she found herself ‘talking of little else’: ‘AIDS has devastated my world. The most important person in my life died of AIDS and I sat with him every day. I’ve lost so many friends’ (p. 258). At the same time, Sontag also claims she wrote the story ‘drawing on experiences of my own cancer and a friend’s stroke’ – that of prominent New York theatre director Joseph Chaikin (Maunsell, 2014: 141). ⁵ The resulting universality of the story helps it speak to timeless fear and anxiety surrounding disease and death. As Sontag herself put it, ‘Radical experiences are similar’ (p. 258).

‘One of the most terrifying aspects of the disease’, one character in the story says, ‘is that you don’t know when you contracted it . . . and who knows . . . how many are going to get it’. The narrative consists of fragments of conversation whispered by the friends of an unnamed patient who lies sick in a hospital bed, sometimes mute or ‘extinguished’, but in the end, emphatically ‘still alive’. The piece captures a dialectic of isolation and community. At first, dying patients could not be visited and warnings about contagion were posted on hospital room doors. The patient wants his friends to visit, but some are still fearful, while others worry about making him sicker. On one hand, patients faced stigma and isolation. On the other hand, ‘It seemed that everyone was in touch with everyone else several times a week, checking in . . . everybody is worried about everybody now . . . that seems to be the way we live, the way we live now’. Covid-19 similarly showed how barriers to social contact also increase its importance.

Read in a time of what we now call ‘social distancing’, Sontag’s story aimed to overcome stigma and bring contact and community to suffering patients. But what was in it for the visiting friends? Perhaps, Sontag muses, the friends visit out of morbid fascination – excitedly imagining that ‘this must be like what people felt in London during the Blitz’. Perhaps, others were ‘trying to define [them]selves more firmly and irrevocably as the well’, even though they know they could well be next: ‘As far as I know, I’m not at risk, but you never know’. In the end, Sontag suggests that, they too were ‘learning how to die’. She captures the uneasiness in the air through details down to the metallic taste that lingers in the patient’s mouth, spoiling his appetite. She transforms him from someone consumed by a disease to someone living with a disease.

In March 2020 just before Germany went into lockdown, Verena Lueken (2020) discussed Sontag’s story in the Frankfurter Allgemeine Zeitung, exploring how communication and togetherness were changing in the pandemic. If social distance is a popular strategy against infection (as abstinence was in the AIDS crisis), how can one prevent the infected or vulnerable from feeling cut off from the rest of society? ‘How can a society learn to isolate people to avoid contagion, but not to speak of them as if they were no longer there – the old, the at-risk, the others?’ To draw from Masha Gessen’s (2020a) brilliant reflections on Hannah Arendt, how can we stay safe while helping one another endure the concomitant ‘pandemic of loneliness’?.

Sontag’s (1978) earlier work ‘Illness as Metaphor’ highlighted the importance of the way diseases are socially and culturally framed. She criticized historical patterns surrounding diseases including tuberculosis (a disease of ‘passion’) and cancer (a disease of ‘repression’) that made affected people both patients and pariahs. The ‘double death’ of stigma and victim-blaming exacerbated the pain and suffering of disease itself, and a ‘double trauma’ resulted from the fact that, in the words of Douglas Crimp, ‘certain people are experiencing the AIDS crisis while the society as a whole doesn’t appear to be experiencing it at all’ (Caruth et al., 1991: 541, 539). Although she did not acknowledge it in the book, Sontag wrote Illness as Metaphor following the first of several bouts of cancer that would eventually take her life (Moser, 2019). Attuned to stigma from personal experience, she argued that the primary cultural tool for addressing disease, metaphor, often inhibited understanding and shamed victims by blaming them for their own suffering. She writes on the first page: ‘My point is that illness is not a metaphor, and that the most truthful way of regarding illness – and the healthiest way of being ill – is one most purified of, most resistant to, metaphoric thinking’ (p. 3). Sontag’s argument has had an enduring impact yet met many criticisms, partly because her primary cases of tuberculosis and cancer are such different illnesses, and also because metaphor can be a powerful source of meaning for the sick.

By the time Sontag’s 1988 essay ‘AIDS and Its Metaphors’ was published, her earlier argument about the power of stigma had been become clear to all who cared to see in the ongoing crisis. She argued that the naturalistic language of ‘plague’ imbued an HIV diagnosis with a false sense of inevitability that amounted to a premature medical and social death. Having survived a severe case of cancer a decade earlier, Sontag insisted on holding out the possibility of disease-specific treatment and recovery. In a review titled ‘Against Fatalism’, Paul Robinson (1989) captured the stakes of her intervention: ‘“one cannot think without metaphors,” so the correct question to ask regarding the way we think about AIDS is whether its metaphors are well or ill chosen’. Robinson ultimately disagrees with Sontag’s focus on the social aspects of pain, concluding that ‘The disease itself, and not the way we talk about it, is the true source of its horror’. However, Sontag (1989) had already offered a credible rejoinder to this view: ‘It is not suffering as such that is most deeply feared but suffering that degrades’ (p. 37).

Sontag claimed this idea came to her when she was suffering from cancer herself and was dismayed that so many fellow patients in the hospital felt ashamed and hid their illness: ‘it wasn’t just an illness, it seemed to be some kind of embarrassment or scandal’ (Kates, 2014). When it came to AIDS, she criticized

concerns about pollution, for instance, and contamination that reinforce the horror of the disease. The disease is bad enough . . . but why should people feel guilty, why should they feel as if they are carriers of evil? And they do with AIDS, and they have with cancer.

Against such moralizing, she insisted, ‘There is such a thing as accident, there is such a thing as fatality, and there is such a thing as thoroughly undeserved catastrophe’. Sontag’s experience with cancer and having close friends with AIDS revealed that the natural catastrophe of disease could only be addressed once the social catastrophe of stigma was cleared away.

The gay critic D. A. Miller (1989), on the other hand, saw Sontag’s response to AIDS as ‘drafted in ignorance’ and evidence of her ‘mandarin aloofness’ (p. 101). Her pretentious style, he said, offered an ‘unrelenting intellectualization of AIDS’, while distancing herself from actual victims and activism (Sontag, 1989: 101). She wavered between describing the disease as an abstract, universal threat and talk of ‘promiscuous homosexual men’, showing little sympathy for the specific communities the disease targeted (p. 26). Rather than challenging the ‘homophobia, racism, and cultural conservatism’ allegedly produced by metaphoric thinking, Miller charged Sontag with ‘reinforc[ing]’ them (pp. 99–100). Most significantly, Miller alleged, Sontag’s individualized understanding of disease based on her own cancer led her astray. Regarding the case of the collective epidemic of AIDS, which required an organized response like that of ACT UP, Miller found Sontag’s disdain for military metaphors ‘almost unspeakably insulting’ (p. 101). As Avram Finkelstein (2018) wrote, ‘AIDS was a war, and it was no metaphor’ (p. 59).

Sontag’s multidirectional reflections on disease offer insight and comfort at the same time as they serve as a cautionary tale about the limits of generalization and the importance of disease-specific analysis. In a more self-reflexive spirit of employing analogies at the same time as contesting them, Erll asks in her 2020 essay, ‘what could a “Corona – never again!” look like?’ (p. 867). In fact, both Germany and the United States have witnessed the deployment of slogans like ‘never again’ and ‘corona dictatorship’ to discredit public health measures and lockdowns by associating them with traumatic histories of totalitarianism. This serves as a reminder that while we may strive, with Walter Benjamin (2003), at ‘appropriating a memory as it flashes up in a moment of danger’, this task not without its risks (p. 391). If memory becomes unmoored from present reality and the work of weighing the advantages and disadvantages of particular historical analogies, it can lead us astray and serve as a detriment to understanding and appropriate response.

The risks, then, are clear. Still, I do not think they would have dissuaded Sontag herself from making these connections today. From one perspective, Sontag’s short story is just one of many works of art and literature that proved moving – even essential – in a very different epidemic and historical moment. But more importantly, her story’s inherent transposability – inspired by experiences of cancer and stroke and read as humanizing those dying of HIV/AIDS and Covid-19 alike – offers us not only narrative mnemonic strategies but a broader illustration of the multidirectionality of the memory of crisis. In the sweeping yet evocative spirit of Sontag’s work, I conclude with a mnemonic proposal both concrete and potentially transferrable.

Conclusion: revisiting the AIDS Memorial Quilt in a time of crisis

At the same time as Sontag was writing her story, activists and relatives of AIDS victims had their hands busy creating a different kind of archive of and memorial to the crisis (Figure 13).

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Figure 13.

The NAMES Project AIDS Memorial Quilt in 1987. Photograph by Carol M. Highsmith. Courtesy of the Library of Congress.

The enormous AIDS Memorial Quilt was conceived by the HIV-positive activist Cleve Jones (2007), co-founder of the San Francisco AIDS Foundation, in 1985 at an annual memorial held for the assassinated gay politician Harvey Milk. The Quilt’s first 40 panels were presented at San Francisco’s Lesbian and Gay Freedom Day Parade in June 1987. When it was displayed on the Washington Mall in October 1987, it was embroidered with the names of 1920 victims and covered an area the size of two American football fields. By 1989, it included more than 10,000 panels; by 1992, over 20,000 (Hawkins, 1993). Today, the Quilt contains nearly 50,000 panels and weighs approximately 54 tonnes, ‘making it the largest piece of community folk art in the world and, more importantly, the weightiest memorial to any pandemic in history’ (Honigsbaum, 2018). Its ‘increasing size, and the fact that it can barely be contained or even experienced all at once’, Peter Hawkins wrote in 1993, ‘serve to dramatize a present reality over which we seem to have no control’ (pp. 762–763). It benefits not only from its ‘ongoing reproduction’, but also its ‘internal pluralism’ – loved ones placing additional objects upon it – which ‘suggests the advantage of multiple moods and gestures’ (p. 779). While some from ACT UP saw the Quilt as domestic, passive, effeminate and apolitical, it was, after all, displayed in the heart of the nation’s capital, amid war memorials honouring fallen heroes. Charles Morris (2007) has noted that the Quilt was first displayed the same year as the founding of ACT UP, and that ‘given their simultaneity and historical significance in response to the epidemic, the AIDS Quilt and ACT UP should, despite their opposition, always be remembered together’ (p. 562). This mnemonic link satisfies Douglas Crimp’s (1989) famous call for ‘mourning and militancy’ (p. 18). Co-creator Cleve Jones (2007) reflected upon his intentions for the Quilt vis-a-vis the AIDS crisis: ‘If it raised a single question, it was, What are we going to do about it? That was the challenge we laid at the national doorstep’ (p. 591). Jones has since clashed with the organization that maintains the Quilt, insisting that it ‘is not a passive memorial’ and, against its ‘warehousing’, still conceives of taking it to the ‘front line of activism’ and displaying it in ‘hot zone[s]’ of the HIV/AIDS epidemic (Morris, 2007: 565).

Since the Covid-19 pandemic began, Jones reports, ‘I’ve been thinking about the parallels [between AIDS and Covid-19] every day’ (Adler, 2021). Gert McMullin, who has contributed over 130 panels, began using fabric intended for the Quilt to produce face masks for healthcare personnel. ‘The fabric we were going to use for people who died is now going to be used for people, hopefully, to live’, she said (Shen-Berro, 2020). The Quilt thus continues to grow and to give. When the time comes to memorialize the hundreds of thousands of Americans who have died from Covid-19, the Quilt will serve as a model, material yet virtually accessible in an online format. ⁶ It is a monument not to a final triumph over HIV/AIDS but to the process of communities managing what Lauren Berlant (2011) called ‘crisis ordinariness’ and the ongoing work of care, comfort, and repair (p. 10). As Peter Hawkins (1993) observed, in the Quilt,

[P]rivate identity is held up as monumental; the intimate stretches for as far as the eye can see. In fact, by overdramatizing intimacy, by taking small gestures of domestic grief and multiplying them into the thousands, the Quilt makes spectacular demonstration of the feminist dictum, the personal is political . . . Occupying acres of the Mall, in space the project measures not in the seamstress’s square feet but in macho football fields, the Quilt redescribes the entire nation in terms of the epidemic – it says, America has AIDS. Here sorrow would knit together the social fabric and personal loss to become the common bond of citizenship: we’re all in this together. (p. 777)

Owing to its plasticity, the AIDS Quilt continues to evolve with the virus itself, growing with the number of victims and preserving ever more memories. In its monumentality, it testifies to the ways the collective memory of mass death, like epidemics themselves, extends in a wider frame than meets the eye, linking pandemics past, present, and future. It also stubbornly reminds us that pandemics often persist long after they may be declared ‘over’ in hegemonic accounts of crises. This lesson about contesting historical temporalities underlies the slogan displayed on the enormous banner carried by ACT UP’s contingent at the 1990 New York City Pride March: ‘THE AIDS CRISIS IS NOT OVER’ (Figure 14). This message still rings true – to such an extent that in the summer of 2021 the HIV-positive veteran ACT UP activist and artist Gregg Bordowitz radicalized it further, installing a massive banner on the exterior of New York’s MoMA PS1 gallery that read: ‘THE AIDS CRISIS IS STILL BEGINNING’ (Bordowitz, 2021).

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Figure 14.

ACT UP bumper sticker created by Little Elvis (with Avram Finkelstein) (1987–88). International Center of Photography. Courtesy of ACT UP.