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AIDS-Trauma and Politics: American Literature and the Search for a Witness

AIDS-Trauma And Politics: American Literature And The Search For A Witness

“It may be hard for your viewers to remember how difficult it was for people to talk about H.I.V./AIDS back in the 1980s. And because of both President and Mrs. Reagan – in particular, Mrs. Reagan – we started a national conversation, when before nobody would talk about it. Nobody wanted anything to do with it”

—Hillary Clinton, 2016.


When Nancy Reagan died in March 2016, Hillary Clinton, the Democratic candidate for President of the United States, offered some words of respect. In so doing, Clinton mistakenly championed Ronald Reagan and Nancy Reagan for leading conversations about H.I.V./ AIDS when it began ravaging gay communities in the 1980s.  The problem with Clinton’s remarks to MSNBC’s Andrea Mitchell, however, is that it was the Reagans themselves who did not want “anything to do with it” (Chozick).  Beholden to the Christian right for political and financial support, the Reagans ignored the crisis, or worse, while tens of thousands died from the disease.

Although the Centers for Disease Control and Prevention identified the disease in 1981, President Reagan did not give a speech about it until six years later, in 1987. By that time, 40,000 people had died of the disease and another 36,000 had been diagnosed (Chozick). Of course, facing significant criticism, Clinton apologized immediately, after having significantly alienated much of her base. “While the Reagans were strong advocates for stem cell research and finding a cure for Alzheimer’s disease, I misspoke about their record on H.I.V. and AIDS,” she said two hours later. “For that, I’m sorry” (Chozick).

The moment, especially for the gay community, felt like a double wounding: an inability to acknowledge the Reagans’ inability to acknowledge a burgeoning health crisis costing thousands of lives—that even thirty years later, it was more important to center and lift up the Reagans than those who died, who lost loved ones, and who struggled to force America to recognize and fight against the disease. It also emphasized the ways in which a cultural wounding or trauma can perpetually appear if it is not adequately addressed in the first place. The ethical failure of the Reagans, for example, while criticized sharply by the left, remains unexamined to this day by even our Democratic presidential candidates.  Hillary Clinton’s gaffe, easily seen as a sign of forgetfulness, can just as easily be recognized as the sign of the cultural and national unconscious speaking through her, reminding us that we still have work to do in acknowledging the nation’s sick.

Frequently when trauma theorists speak about trauma and narrative, there’s a rhetoric of an original forgetting—something that was “missed” at the time speaks insistently through pain. What is somewhat remarkable, however, is that activists, journalists, and creative writers had begun to speak out about the HIV/AIDS crisis almost as soon as it appeared on their radar.  The problem, in this case, was not lack of knowledge by those affected most directly.  It was a lack of empathy and a lack of willing listeners to the plight of the sick that led to an overwhelming silence surrounding AIDS.  It is hard to believe, further, that such a fundamental text as Randy Shilts’s And the Band Played On: Politics, People and the AIDS Epidemic (1987) is now thirty years old, yet still carries as much of a shock as it did in the 1980s, in part because of its force in reminding American readers of the moral and ethical failure of our leaders a generation ago.  Despite Shilts’s treatment of the so-called “patient-zero,” which is rhetorically problematic, the book remains a testament to a generally under-recognized moment in our nation’s past. As Shilts explains in the book’s prologue: “The bitter truth was that AIDS did not just happen to America—it was allowed to happen by an array of institutions, all of which failed to perform their appropriate tasks to safeguard the public health. This failure of the system leaves a legacy of unnecessary suffering that will haunt the Western world for decades to come” (xxii).  The significant phrase here is “allowed to happen,” as any number of American institutions could have come forward to try to stop the spread of the disease and the social anomie that settled into gay communities on the east and west coasts.  Shilts repeats the word “failure” here to underscore that point: the media, the government, religious leaders, to name only a few of the institutions Americans would say they trust (or ought to be able to trust) turned their backs in such a way that we are still, thirty years later, reeling from the effects.

In the void left by this failure, I would propose that it is no accident, that twenty and thirty years after the AIDS crisis, such films as Angels in America (2003) and The Normal Heart (2014) would find large audiences and critical acclaim—giving rise to conversations about the ravaging effects of AIDS among a new generation of Americans. I know very well that these were plays, originally published in 1993 and 1985, respectively. The adaptations, however, register quite differently in the 21st century, in our own political moment and cultural ambivalence about the 1980s. Further, Larry Kramer’s The American People, Volume I (Search for my Heart) (2015) kept the conversation going through Kramer’s book tour of 2016, a tour Kramer withstood despite his own health struggles.

Also in 2016, leading critics named David France’s How to Survive a Plague as one of the best books of the year.  Subtitled “The Inside Story of How Citizens and Science Tamed AIDS,” preparing the reader for an academic accounting of politics and science, France’s book is actually an incredibly literary and emotionally evocative account of the history of the disease, much like its inspiration from nearly 20 years earlier: Paul Monette’s Borrowed Time (1988).  With an epigraph heralding Monette—“Grief is a sword, or it is nothing”—France’s book kept social activism and scientific discovery relating to AIDS in the spotlight for a renewed cultural reckoning.

Both France and Shilts before him focus their attention on science, grass roots politics, and citizens—three cultural forces that worked together in order to compensate for the silence of broader institutions such as the United States government.  As Shilts would argue: “Because of their efforts, the story of politics, people, and the AIDS epidemic is, ultimately, a tale of courage as well as cowardice, compassion as well as bigotry, inspiration as well as venality, and redemption as well as despair” (xxiii). Beyond the contributions of political and scientific discourse, however, AIDS-Trauma and Politics adds to this conversation the important contributions of literary writing in the 1980s and 1990s, considering specifically the ability of AIDS representation in American literature to advance human rights discourse when few political leaders, religious leaders, social leaders, or even leaders in the medical profession seemed to willing to do so.

As Cindy Patton reveals in her groundbreaking Inventing AIDS (1990), when she first saw the stark poster with the lettering Silence=Death, which appeared in 1986, she originally read it as Science=Death (Patton 127). The easy elision, she argues, is no accident, as “Silence/science has dogged our very existence—once in the closet, now media blackouts; once psychiatry, now internal medicine. The twin threats are oblivion and diagnosis” (127).  She goes on further to reinforce the connection between science and silence when she writes: “Science, or rather, the governance of the political by scientific discourse, equals death for people living with HIV. Silence, or rather, educators’ failure to speak for fear of inciting the body to acts of pleasure that are now defined as ‘risks,’ prevents specific classes of people from obtaining information—about safe sex and needle hygiene—that will save their lives. And this can only be described as death by disinformation” (131). Much has been written about the social deaths of marginalized groups, following the lead of Orlando Patterson, but Patton, and other AIDS activists, have made compelling arguments to show how social death inevitably leads to literal death, and it is as troubling when these deaths are the result of passivity as when there are active attempts on marginalized groups’ lives.

In the gaps left by scientific, political, religious, and social discourses, the literature of illness – in the form of drama, memoir, poetry, novels, and short stories – refuses passivity in the face of silence.  These literatures make a special claim of the reader precisely because they privilege stories of human suffering and insist on an empathic and ethical response. Literary language creates a face for a victim, a face from which one cannot turn away.  Without acknowledging the contributions of literary writers – writers who were also citizens and activists – we have a one sided view of the fight to establish cultural awareness of the AIDS crisis. With a focus on literature’s unique ability to provoke an emotional and ethical response in the face of one’s suffering, AIDS-Trauma and Politics brings together the method of close reading with the theoretical discourses of trauma studies and narrative medicine in order to make four primary claims:

  1. In addition to grass-roots activists and scientists who led the way in prioritizing AIDS as a health crisis, such contemporary American authors as Paul Monette, Tony Kushner, Tory Dent, Michael Cunningham, Larry Kramer, Susan Sontag, Mark Doty, and many others contributed to important national debates about the emergence of AIDS in America.
  1. It is precisely because of the power of literary language in particular that these authors had such an effect. Responding to the people’s inability to bear witness to such a devastating disease, these cultural artifacts (plays, novels, poems, memoirs) moved people to empathy in ways that other modes otherwise fail.
  1. The authors in this study, in searching for ways to provide witness, contribute significantly to conversations about the relevance of trauma studies. While most critics consider trauma or PTSD to be an effect of witnessing a single unexpected event, I use this literature to recast trauma as an event or series of events without a witness—while redefining “event” as taking place over several years or even decades.
  1. In linking the language of trauma with the language of illness narratives, I argue that this new field for approaching literary texts generally referred to as narrative medicine is indebted to trauma studies, particularly in their shared values of ethics, witness, and empathy in the face of another person’s suffering.

In its interest in the relationship between psychoanalytic studies and AIDS literature, this monograph is most closely aligned with Monica B. Pearl’s AIDS Literature and Gay Identity: The Literature of Loss (2013). Pearl’s monograph uses Freud’s psychoanalytic theories of mourning and melancholia to interpret AIDS narratives published between 1988 and 2012, while taking as a secondary focus the way literature reflects gay identity. As Pearl asserts: “While I claim that the literature of AIDS is a response to grief, that is, it is part of the work of mourning itself, I also pursue the ways that the literature charts changes in the identities and identifications of those who are writing and those who are reading this literature” (1). Drawing heavily on the way Freud’s Interpretation of Dreams, Beyond the Pleasure Principle, and Moses and Monotheism have been read as foundational texts for trauma studies, I am more interested in how psychoanalysis and narrative medicine theorize history and ethics than in how it highlights the ways in which the Freudian concepts of mourning and melancholia contribute to a sense of identity for generations of gay men.[1]

Narrative medicine and trauma theory meet at the intersection of acknowledging the humanity of those who suffer. In her 2006 book, Narrative Medicine: Honoring Stories of Illness, Rita Charon suggests that physicians need to approach patients with narrative awareness. In a significant section entitled, “Ethicality,” Charon writes: “Both bioethicists and literary scholars write about narrative ethics, scaling the disciplinary boundaries between health care and literary studies to contemplate the obligations incurred in narrative acts, the ethical vision afforded by stories, and the ethicality of the very acts of writing and of reading” (55). She takes her cues from the author and scholar

Adam Zachary Newton, whose 1995 work Narrative Ethics argues that “a narrative is ethics in the sense of the mediating and authorial role each takes up toward another’s story” (48). For Newton and Charon after him, “ethical” is not simply a modifier to describe a certain kind of text, but rather is an ideal unto itself; further, narrative should not be seen as either ethical or not ethical, but as the very definition of ethics, given its investment in a relationship between and among others.

Particularly useful for considering the importance of AIDS writing in the 1980s, Charon’s sense of narrative ethics as reflected through Newton “exposes the fundamentally moral undertaking of selecting words to represent what before the words were chosen was formless and therefore invisible and unbearable” (Charon 56). This, for me, is where the significance of literary writing becomes central to the story of AIDS:  the language offered by memoirists, dramatists, and poets in the early 1980s gave American readers a way to grasp the otherwise unspeakable effects of AIDS. While some critics would lament Monette’s use of war and moon imagery, intertexts, and self-referential humor to depict the experience of watching his lover die, it is through these very literary devices that a seemingly out of touch reader can find her way into the story.

Further, these authors are interested, fundamentally, in relationships: in relationships between characters, but also in the unique relationship between writer and reader, which functions much as the relationship between one individual and another. Acknowledging her debt to Cathy Caruth, a preeminent trauma theorist, Charon reminds us that: “The trauma studies scholar Cathy Caruth observes that ‘the shock of traumatic sight reveals at the heart of human subjectivity not so much an epistemological, but rather what can be defined as an ethical relation’” (qtd. in Charon 57).  The authors that I take up here use language to reenact “the shock of traumatic sight”—a shock that binds us, text to reader, reader to reader, citizen to citizen, healthy to sick.

Rather than direct her message to physicians and other healthcare workers in arguing for a deeper sense of empathy as provided by the literary text and an ethical relationship to language, Ann Jurecic speaks directly to literary critics themselves.  In Illness as Narrative (2012), Jurecic suggests that contemporary critics do not do well in interpreting illness narratives and calls upon us all to do better.  The goal of her book is to “explore how writers and readers use narratives of illness to make meaning of the experiences of living at risk, in prognosis, and in pain” (4).  Further, she seeks to “consider how narratives of illness invite reflection about the purpose and future of literature, the arts, and literary criticism” (4).  The impetus for Jurecic’s book seems to be a similar impetus for mine, which is an understanding that, in the 1980s and 1990s, “the quantity of writing about HIV/AIDS [seemed to] exceed that of any previous disease” (2).  While she is primarily interested in the ways that AIDS memoirs gave way to illness and disability narratives as established literary genres, this book pauses at the output of AIDS writing in particular, especially as it demands an ethical witness. Taking her lead, then, I am focusing on a specific kind of writer – one who makes self-conscious demands on the reader to witness—and I am focusing on a specific kind of illness.

Such critics as Caruth (Unclaimed Experience; Trauma: Explorations in Memory), Shoshana Felman and Dori Laub (Testimony: Crises of Witnessing in Literature, Psychoanalysis, and History), Dominick LaCapra (Writing History, Writing Trauma)—and, more recently, Jeffrey C. Alexander (Trauma: A Social Theory) and Kurtz (Trauma and Literature)—have considered extensively the significance of the ethical witness in trauma narratives of the twentieth and twenty-first centuries. Both Rita Charon’s Narrative Medicine and Ann Jurecic’s Illness as Narrative use the same language as trauma studies and privilege an ethical relationship between speaker and listener, as indicated by such common concepts as “witness,” “ethics,” and “listening,” and do important work to begin to draw connections between the fields.

Mourning and melancholia defined the above two discourses, but there is a third, an awareness of trauma in this sense that this encounter with life – and, especially death—comes too soon, and without a proper witness.

A closer reading of Caruth’s 1991 interview with such AIDS activists as Gregg Bordowitz, Douglas Crimp, and Laura Pinsky – an interview reprinted in Caruth’s edited collection, Trauma: Explorations in Memory (1996) – further reveals the extent to which narrative medicine has emerged from trauma studies of the early to mid 1990s.  The interview, entitled “The AIDS Crisis is Not Over,” is singular in the Trauma collection in the sense that it begins to redefine trauma not as the effect of a single historical event, but as the effect of a social disregard for those who are ill.  Laura Pinsky establishes the stakes of their work early on when she says: “People who are ill often want a chance to talk about it: about going to the hospital, sitting in the doctor’s waiting room, about what their symptoms are, what their bodies feel like, what medications they are taking. It is often hard to find someone who is willing to listen to this” (Caruth 257).

Significantly, Pinksy’s description allows Caruth to recast a prior definition of trauma, thus: “So part of the traumatic experience itself is the relation to other people, others who are actively aggressive or simply don’t want to listen?” (257). The trauma, in other words, is linked to a relation, or, more precisely, lack of relation with another—and that failed relationship has to do with a failure, simply, to listen to what the ill have to say.  Douglas Crimp expands this notion when he says:  “Apart from the corporeal reality of the disease, we could say that, if there’s trauma associated with it, it’s a socially produced trauma. In that sense, it’s not like a catastrophe that just happens; it is of course itself catastrophic, a catastrophic illness, but at the same time the negative effects—the extremities—that most of us experience are social” (257).

While not specifically referring to AIDS testimony, Caruth introduces her entire collection using this same language—language of trauma, of address, of listening, of event – words and ideas or ideals that have been incorporated into the work of Jurecic and Charon as well.  As Caruth explained as early as 1995:  “the history of a trauma, in its inherent belatedness, can only take place through the listening of another. The meaning of the trauma’s address beyond itself concerns, indeed, not only individual isolation but a wider historical isolation that, in our time, is communicated on the level of our cultures” (11).

For me, the silence and isolation surrounding the AIDS crisis in the early 1980s undermines individuals with a chronic illness on multiple levels. If we think, especially, about the relationship between politics and representation, we must acknowledge how literature works doubly to represent:  First, it uses literary language to represent the otherwise inexplicable: the effects of disease for which those who suffer often have no words; second, it serves to represent tens of thousands of people when their political representatives had remained silent.  I am thinking of AIDS-Trauma as a hyphenated noun in the sense that the type of trauma these authors describe is interconnected with AIDS, and I have linked it with Politics because the lack of political recognition—indeed, the failures of our national politics—contributed primarily to the traumatic effects of the disease.

To put it slightly differently, AIDS-Trauma and Politics considers American literary representations of the social and political silence surrounding the AIDS crisis in the U.S. in the 1980s. Although the silence was ongoing, costing thousands of lives, I am calling the national failure traumatic in the sense that the AIDS crisis was born largely without a witness—a refusal to acknowledge this nation’s sick—which had not only political and medical consequences, but also social consequences as well.  As a literary critic, I see ways in which the arts, exemplified in this book by close readings of literature and film, call to light social problems that might otherwise be overlooked in such discourses such as politics, the law, and journalism.  I also look to trauma studies to ground my work, and in using the AIDS crisis of the 1980s as an exemplary case, I propose to redefine trauma not simply as an “event that happened too soon,” but rather as an ongoing series of oversights that refuse to acknowledge or witness the humanity of those who suffer.  In this way, I too believe that the future of literature and literary criticism depends upon our ability to showcase its relevance, even if that awareness is thirty years too late, as in the case of exemplary AIDS narratives.

On the one hand, I am aware that the kind of move I am making here is paradoxical in its consideration of American literary representations of silence surrounding the AIDS crisis. How do you represent and even interpret silence? As a literary critic, I see ways in which the language of film and literature provides access to knowledge unavailable to more traditional forms of writing in order to call to light social problems that might otherwise be overlooked.

But even more significantly still, I am struck by the fact that AIDS is surrounded by not one silence – the silence of political and religious leaders in the 1980s – but a second as well: A specific kind of critical silence that has yet fully to acknowledge the impact of these important literary texts.  Despite American literature’s devotion to representing AIDS, it, too, has been largely silenced in academia via lack of critical awareness—a silence much like the silence of political discourse surrounding the emergence of AIDS itself.

On the one hand, many gay critics—exemplary among them are Douglas Crimp, Tim Dean and Christopher Lane— have written articles and published collections considering representations of HIV /AIDS and its aftermath, works that, for the most part, were published in the 1990s and early 2000s.  When I can, I engage these critics and theorists directly in the chapters of this book.  However, it does appear to me that straight critics have been happy to let the gay community do the heavy lifting on this topic; we have relied upon them to make significant inroads, and then the conversation seemed to go static.[2]  For example, continued searches for recent scholarly articles published on depictions of the growing AIDS crisis in the 1980s produce just over a dozen essays, written by such authors as Laura Beadling, William Haver, Jason Tougaw, Sarah Brophy, and Lisa Diedrich that have been published in a range of journals and collections on topics such as trauma, illness, autobiography, and disability.[3] Notable exceptions include Pearl’s AIDS Literature and Gay Identity and Sarah Brophy’s 2004 monograph, Witnessing AIDS, which is already nearly fifteen years old.  Further, these two works are more interested in the distinction between mourning and melancholia within psychoanalysis than the more deconstruction-inflected theory of trauma that insists upon a witness in the wake of an unspeakable horror.

Another possible silence includes the oversight of the role AIDS narratives, particularly memoirs, played in evolving theoretical lenses that account for illness and witness. As I argue here, the worries about ethics, or ethicality, representation, and silence, are not new to the discourse or new theoretical field of narrative medicine, but rather dependent upon conversations begun in the 1980s. In other words, since the writing of the by now established canon of criticism on HIV representation, there have been major theoretical developments in such areas as trauma theory and narrative medicine that may shed light on previous conversations; at the same time, I believe these theoretical models should be a little more aware of the massive traumatic illness that dominated the 1980s and after.

This clarification is significant for the purposes of the book: Like Shilts, Crimp understands the trauma to be “socially produced”; the trauma happens not like an unexpected historical moment such as the dropping of the atom bomb, for example, or watching a soldier get killed during Vietnam, two further examples of trauma that the collection takes up.  Rather, the trauma occurs in relation to another human being, and even, in this case, institutions, at precisely the moment – or years – when he or she is unwilling to witness the truth of the illness.

Thomas Keenan picks up on this effects of this social unwillingness to bring home the unique category that I am calling AIDS-Trauma, by explaining how: “There’s a double trauma here. On the one hand, there’s a cataclysmic event, which produces symptoms and calls for testimony. And then it happens again, when the value of the witness in the testimony is denied, and there’s no one to hear the account, no one to attend or respond—not simply to the event, but to its witness as well” (258). The second trauma takes place in the denial of testimony—in the turning away. What is so remarkable about the literary texts I take up in this monograph is that they refuse this second trauma; they refuse to let the reader-as-witness turn away.  They draw on the power of literary language to demand an ethical relationship in the place where politics, religion, and even the social contract have failed.  The authors, as exemplified by Monette, write their testimony, and, for Keenan: “The testimony is an address, which means that it’s a provocation to a response. And that’s what they don’t want to give.  They don’t want to respond to the person who has called—for responsibility” (258). The American authors in this book who search for a witness also insist upon a response, and, further still, require readers to take responsibility, even all of these decades on.

Although Paul Monette’s memoir Borrowed Time (1988) is by now considered a foundational text in the tradition of AIDS literature, I propose here that it warrants a fresh look, not simply for its representation of the early days of what Monette refers to as “living on the moon,” but rather for its embodiment of the pivot in theoretical approaches for reading literatures of illness around the same time. In particular, reading the work in 2018 reveals how it also testifies beyond itself, to signal a “wider historical isolation” that seems exceedingly relevant even today.  Further, using Borrowed Time as an illustration, we might be able to see the was in which narrative medicine is indebted to trauma studies—and that the two are indebted to AIDS narratives—in their plea to bear witness to the testimony of a suffering subject. In this way, we must keep in mind the definition to trauma that denotes not simply as an “event that happened too soon,” but rather as an ongoing series of oversights that refuse to acknowledge or witness the humanity of those who suffer.

Monette addresses these oversights when he writes, about a third of the way through Borrowed Time:

“And if the government was stone-deaf, the press was mute. The media are convinced in 1987 that they’re doing a great job reporting the AIDS story, and there’s no denying they’ve grasped the horror. But for four years they let the bureaucracies get away with passive genocide, dismissing a no-win problem perceived as affecting only an underclass or two. It was often remarked acidly in West Hollywood that if AIDS had struck boy scouts first rather than gay men, or St. Louis rather than Kinshasa, it would have been covered like nuclear war.” (110) 

By juxtaposing boy scouts with gay men, on the one hand, Kinshasa and St Louis, on the other hand, Monette points up how the Reagan administration valued some lives over others—they valued boys with Christian values, on the one hand, over men who had been described by the Christian right as being “punished” by AIDS for being gay.  And they valued white middle class folks over French-speaking Africans. Further, Monette engages the language of war here—he often compares living with AIDS to living “in the trenches”—to escalate the immediacy of the crisis:  such diction as “stone-deaf,” “mute,” “horror,” “passive genocide” and “nuclear war,” conveys a sense that we are not talking simply about illness anymore, but about an illness ravaging a generation while political leaders refused to acknowledge what they were seeing and hearing.  No one was bearing witness, Monette says here:  To be both “stone deaf” and “mute” is to be beyond silent on the subject – it is to be willfully so, given the powers to speak that the federal government otherwise possesses. For him, even while the press thought they were witnessing the emergence of a deadly virus—and congratulating themselves for their few stories that came too late—they were simultaneously missing the larger story, which is the cultural and political silence of the time. They were, in other words, missing the story of how the entire nation seemed to be missing the story, the crisis.

Monette continues this direct criticism of the Reagan administration when he says: 

“The rumors were appalling. It was said that everyone appointed by the Reagan administration in a major public health capacity was either a Mormon or a fundamentalist. The chief spokesman for the administration now was the overripe and venomous Patrick Buchanan, one of whose major qualifications for the job was his widely quoted remark that nature was finally exacting her price on homosexuals for having spilled their seed against her. The right-wing firebrands are obsessed with sodomy, always forgetting that half of the gay world is women. This deterministic smugness, whereby we were only getting what we deserved, was so widespread in the upper chambers of the government that the AIDS issue probably never darkened the threshold of the Oval Office.  Not to mention the fundamentalists: Though the press would not report anything about the antivirals and wouldn’t assess the scope of death of a gay generation, they reported with loving detail every ranting speech of the Falwell-Schlaflys and their money-changing brethren. “God’s punishment” was the major level of public debate in 1985: hate, it appeared, was the only public health tool available.” (166)  

In this poignant moment, Monette highlights the irony of the role religion played in Reagan’s administration—the idea that “the AIDS issue” never “darkened” the Oval Office, in other words, never made it to Reagan’s desk or discussion of policy or the future of the nation, because of the hypocrisy of the likes of Pat Buchanan and Jerry Falwell, both who had Reagan’s ear at the time.  Further, the media seemed to follow suit, slavishly reporting the hatemongers, and staying silent on the possibilities that treatment offered.  Where we would expect an ethical witness in light of thousands dying, there remains only hate coming from the religious and silence coming from the press.

So, in its capacity to describe the horrific effects of AIDS, on the one hand, and the utter disregard for those suffering, on the other hand, I suggest here that Monette’s work is an important precursor for an emergent field of theoretical inquiry called narrative medicine, which centers precisely on the importance of acknowledging the humanity of those who suffer.

We can also see this growing concern in Monette’s unpublished journals archived at UCLA’s Charles E. Young Research Library. Going even farther back, to Monette’s unpublished writing in 1982, as I will suggest in chapter two, reveals that it took a vocal artistic community to communicate the unfolding of AIDS: an unfolding that today reads like a dystopic horror story.  Tracing Monette’s journal entries allows readers access to the buried history of the early days of the AIDS crisis. Writing for the first time in 1982, Monette asks:  “How does one live […] in the AIDS world?”

This question about survival in the “AIDS world,” as Caruth’s interview with Crimp reveals, resonates with the emergence of trauma theory, founded on the notion of the ethical witness. Generally, when literary critics take up trauma theory as a method, they consider the representation of an event as traumatic, borrowing from a key definition of trauma as “a response, sometimes delayed, to an overwhelming event or events, which takes the form of repeated, intrusive hallucinations, dreams, thoughts or behavors stemming from the event” (Caruth 4).  However, an often-overlooked aspect of trauma theory has to do with ethics, with the ethical act of bearing witness to suffering. Trauma theory was never supposed to only be about the horror, but also to provide a vocabulary for thinking about witness, survival, and the ethical dimension of these.

As Monette’s memoir and journals make clear, the birth of the AIDS world had no witness—no one to validate the story of a generation of young people dying from complications of the virus. Inspired by trauma’s insistence on the figure of the ethical witness, scholars in the field of narrative medicine and the medical humanities voice this concern as they argue for the centrality of ethics in the medical setting; as I argue here, Borrowed Time and Monette’s journals help us not only to see the emergence of what Monette calls “the AIDS world,” but also how the language of trauma pervades the demands for an ethical witness in the field of narrative medicine as well.

In addition to Monette, Shilts’s And the Band Played On makes clear the ways in which the media preferred to turn a blind eye to a burgeoning crisis the creative writers could not ignore.  As Shilts writes: “I would not have been able to write this book if I had not been a reporter at the San Francisco Chronicle, the only daily newspaper in the United States that did not need a movie star to come down with AIDS before it considered the epidemic a legitimate news story deserving thorough coverage” (xi).  He goes on to say in a powerful statement that defines a crisis in witnessing:

“People died and nobody paid attention because the mass media did not like covering stories about homosexuals and was especially skittish about stories that involved gay sexuality. Newspapers and television largely avoided discussion of the disease until the death toll was too high to ignore and casualties were no longer just outcasts. Without the media to fulfill its role as public guardian, everyone else was left to deal—and not deal—with AIDS as they saw fit.” (xxiii)

Even as late as the 1990s, such writers as Michael Cunningham began to raise awareness in their creative writing, perhaps as a response to the silence of newspapers and television.  Published in the wake of the Reagan administration’s refusal to acknowledge the American AIDS crisis of the 1980s, Michael Cunningham’s 1994 short story “Ignorant Armies” considers the significance of the ethical witness to a dying man’s suffering, which I read later in this book alongside David Leavitt’s 1990 story, “A Place I’ve Never Been,.” A story built upon keen awareness of how AIDS destroyed the young gay population, Cunningham’s story—like the U.S. government—does not confront the syndrome directly. Instead, Cunningham’s narrator describes the bodily horror of the disease through realistic depictions of lesions, needles, and fluids. Ending in the death of the narrator’s life long friend, the story is book-ended with a recitation of Matthew Arnold’s lines from the poem, “Dover Beach,” drawing on the allusion to accuse America in the 1980s of accomplishing their political goal of marginalizing the gay community by by allowing the institutions that should have protected them to kill them with silence instead.  Rather than providing poetic justice, the story provides poetic ethics: a literary awareness of empathy in the face of a man’s suffering when others turned a blind eye.

More than twenty years after these early writers began documenting those dying in their midst, it seems that, in a kind of belated temporality, writers, filmmakers, and now, finally, journalists, have turned their attention to health crises of underrepresented minorities.  In fact, we might say that AIDS representation seems to have experienced a resurgence, especially in film with such award winning adaptations as Larry Kramer’s A Normal Heart and Tony Kushner’s Angels in America, which returned in the winter of 2017 to London—a place where it originally opened to rave reviews despite the worries that such an “American” play would not translate well in the UK.

During the same spring week, the Times published a story on Larry Kramer, who led the charge in the fight against AIDS three decades ago. The article entitled, “Twilight of a Difficult Man,” seemed also to mark a twilight of the Bush and Obama administrations that took a comparatively aggressive approach to AIDS treatment. The article is a part of the “Lions of New York” series in the Sunday Metropolitan section, a section that seeks to profile “New Yorkers who, in response to the crises of the 1970s and ‘80s, helped shape the city’s renaissance.” In helping to shape the renaissance of New York Kramer also defined the aggressive – and often literary – approach needed to get an administration to listen.  But, I would argue, even the idea of a “renaissance,” is problematic, as it endorses the gentrification—which I take up later through the work of Sarah Schulman—that marginalizes the gay subculture most stricken by AIDS. And yet, or, maybe, as such, there is a way in which we do seem to be in the same place as a generation before. As Kramer says at the end of the article:  “‘I don’t think that things are better generally. […] We have people running this government who hate us, and have said they hate us. The fight’s never over’” (Leland 6).

In some small way, I hope this book can continue the fight—at least in terms of its dual focus on an ethical approach to the ill and the power of literature in the face of silence.  In the 21st century, with so much medical knowledge in our grasp, to refuse to take advantage of it would not only be unethical, but would also further result in socially produced trauma that seems doomed to repeat into the next century if we remain unwilling to listen to the silenced voices in our past.



[1] I am significantly indebted to Sarah Brophy’s Writing, Testimony, and the Work of Mourning, which complicates our assumption that AIDS testimonial writing is unique to gay men and draws on the language of trauma and memory. While not psychoanalytic, Peter F. Cohen’s Love and Anger: Essays on AIDS, Activism, and Politics takes up many of the primary works I consider here and situates them in relation to political activism.  Marita Sturken’s Tangled Memories understands AIDS in relation to the Vietnam War through what she terms a “politics of remembering.”

[2] Such edited collections as Pastore’s Confronting AIDS through Literature gives us an excellent place to start.  But this collection was published in 1993, around the time as many collections appeared, with very few new collaborations appearing in the 21st century.

[3] Lisa Diedrich’s work has been increasingly invested in the role of activism.  Her 2016 monograph, Indirect Activism considers the role of representation alongside illness and activism. Other useful writers in this regard include Biggs, Bordowitz, Lerman et. al., and Verghese.


This excerpt is from AIDS – Trauma and Politics: American Literature and the Search for a Witness. Our review of the book by Kimberly Hurd Hale and Frankie Mastrangelo is also available.

Aimee Pozorski

Aimee Pozorski is a Professor of English at Central Connecticut State University. She is author of Roth and Trauma (Continuum, 2011), Falling After 9/11 (Bloomsbury Academic, 2014), and AIDS - Trauma and Politics (Lexington, 2019).

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