The Height of the HIV/AIDS Crisis, in 10 Books

Kenny Fries looks at the early literature of a mounting crisis

A s a disabled writer, I’m wary of using a medical marker to define an era, because HIV/AIDS is a sociopolitical issue as well as a medical one. But when looking at early HIV/AIDS literature, the convenience of using 1997 as a dividing point is difficult to ignore. That year marks the advent of Highly Activate Antiretroviral Therapy (HAART), when the experience and depiction of HIV/AIDS changed, at least for those of us with privilege and access to doctors and medications, from a death sentence to what is euphemistically called a “manageable chronic condition.”

In compiling this list of HIV/AIDS literature, I’ve necessarily made a few choices. First, the work had to be written before and/or about pre-1997 HIV/AIDS. And because I wanted to look at the undigested reality of those times, I decided not to include work about this era by contemporary authors writing from a retrospective distance. I also limited the discussion to work originally published in English. Perhaps the most important choice I make is not to include the important and crucial memoirs of the period because what I want most to explore is this: Early in the HIV/AIDS pandemic, how did writers create a fictional world based on all-too-painful reality?


Samuel Delany’s Tale of Plagues and Carnivals, part of the eminent science fiction writer’s Nevèrÿon series, is one of the first novels to address AIDS. In this ninth tale of the series, a fatal sexually transmitted disease breaks out, predominantly among gay men. Delany parallels what happens in Nevèrÿon with how New York City dealt with the very early AIDS crisis. That what is seen as the first AIDS-related novel to be published by a “major” publisher was genre-fiction is notable. That it was by an African American gay man even more so, as the African American AIDS experience has too often been marginalized or ignored.


In “The Way We Live Now,” her short story first published in The New Yorker Susan Sontag creates a community surrounding Max, who is sick with AIDS in the hospital. We never hear from Max. Instead, the story is told in fragments by others as they grapple with something they’re not sure they know how to grapple with, the illness and impending death of a friend. Though borrowing her title from Anthony Trollope’s 1875 novel, Sontag’s story is informed both by her own experience of cancer, and her hospital visits to Joe Chaikin, the avant-garde theater director whose 1984 stroke left him with partial aphasia. It is this personal experience that saves the story from the disturbing trope of the voiceless patient and lack of sociopolitical context.


Eighty-Sixed by David Feinberg and The Irreversible Decline of Eddie Socket by John Weir: I think of these two first novels together because they both depict gay life in New York City before, on the cusp of, and during the pandemic. They track what some might see as the sexual excesses of the pre-AIDS era into the time of what was known as the AIDS crisis. By doing so, behavior itself might seem as much a cause for a virus spreading as the longing for what might be unattainable: the perfect body, the perfect love, the perfect life. But read closer to see how the gay community, built on secrecy, competition, and caring, morphed into an example of how a long-despised and marginalized group learned to take the power to change into its own hands.


The Body and Its Dangers and Other Stories by Allen Barnett shares with the Feinberg and Weir novels a bit of gallows humor amid so much pain, death, and loss. In “Time as It Knows Us,” the book’s longest and most moving story, Barnett takes us inside a communal household where everyone is ill or HIV positive and looks at how friend cares for friend.


At the center of People in Trouble by Sarah Schulman is a love triangle set in, and illuminated by, the ravages of AIDS, homelessness, and other social ills of the Reagan era. Realizing they have nothing to lose, the AIDS activists of Justice (based on ACT UP), with whom Molly and Kate become involved, devise and perform acts of civil disobedience to gain attention from a purposefully distracted world. What’s uncanny about this novel is not only the character of real-estate mogul Ronald Horne (enough said), but also the small but resonant symbols of the era, including the teddy bears that were ubiquitously used to comfort those dying of AIDS and the car alarms in the city, to which nobody paid attention despite the loud consistent noise.


Was by Geoff Ryman at first might not seem like an AIDS novel, though its protagonist, Jonathan, is an actor dying of AIDS. Jonathan’s pilgrimage to Kansas to find out about the “real” Dorothy Gael, who L. Frank Baum famously transformed into Dorothy Gale in his classic children’s book, The Wonderful Wizard of Oz, on which the ever-popular musical movie starring Judy Garland is based, can be seen as a fever induced dream. In Was, Jonathan learns of the difficult life of the dysfunctional and abusive Gaels, who suffered through the 1888 Kansas diphtheria epidemic. Interspersed is the story of Frances Gumm, who will become, despite and because of, her own family issues, Judy Garland. Ryman shows how myths and obsessions become the succor of those with difficult pasts, and how we deal with difficult pasts informs the way we deal with a difficult present. In an era where families, and most of society, abandoned gay men to AIDS, the fictions of Was felt all too real.


The Gifts of the Body by Rebecca Brown is a cycle of interconnected stories, all told from the point of view of a caregiver for people with AIDS. Each of the ten stories is about a different patient and each has a theme related to various “gifts,” physical and emotional, of the body. Written in Brown’s trademark minimalist style, we experience the give and take of caregiver and cared for, what passes between them, and the emotions related to our bodies’ mutability. Unlike “The Way We Live Now,” The Gifts of the Body, though told from the point of view of the caregiver, distinguishes itself in its diverse array of characters and the humanity given to each, not only by the caregiver but also by the writer.


Sapphire’s debut Push is told in the visceral voice of Precious, an overweight, dark skinned, HIV-positive teen living with her abusive mother in Harlem. One of the short novel’s revelations is that Precious caught HIV by being raped by the man she knows as her father. Push charts Precious’s journey to self-esteem, helped by a teacher, as well as an AIDS support group. Though some of the latter part of the novel, which includes her classmates’ telling the stories of their lives, can read as agit-prop, Sapphire’s protagonist opens up AIDS fiction to include the voice of an African-American teenager as she is brutalized by, and fights against, a relentless world.


The Line of Beauty by Alan Hollinghurst is the only novel I include published after the advent of HAART. Hollinghurst’s first novel The Swimming-Pool Library (1988), in which there is no mention of AIDS, was set in the summer of 1983, “the last summer of its kind there was ever to be.” The Line of Beauty, which takes place in London during the Thatcherite 1980s (in one of its most famous scenes, the protagonist Nick Guest dances with Mrs. Thatcher), perhaps too subtly for some, indicts those in power, and those whose “values” kept them in power, for the neglect and stigmatization of those dying of AIDS. Hollinghurst does this with no direct political rhetoric. The Line of Beauty puts the early HIV/AIDS era in the sociopolitical context it belongs.

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