AMA Journal of Ethics^®

Abstract

Global transformation demanded by the COVID-19 pandemic prompts consideration of how prior epidemics have contributed to and continue to shape our cultural and sociological understandings of health care and patients. Documentaries and cinematic narratives have charted the 1980s AIDS epidemic in the United States, and this article traces a historical arc of that crisis, contrasts historical (HIV) and current (SARS-CoV-2) contagion experiences, and reviews thematic representations of AIDS and COVID-19 experiences among vulnerable patients and populations.

 

When near your death a friend
Asked you what he could do,
‘Remember me,’ you said.
We will remember you.
Thom Gunn (1992)¹

Some of the agonies that burn in the heart forever begin as brief as snapshots.
Paul Monette (1998)²

From Headlines to Activism to Cinema

On July 3, 1981, the New York Times published an article on a mysterious and rare cancer affecting 41 homosexuals in New York City and California³—mysterious because this “cancer” behaved like a contagion and rare because, prior to this outbreak, such cancers were typically seen in the elderly or immunocompromised. This condition was being diagnosed in younger, healthier men, most of whom identified as homosexual. This was one of the earliest reports of a phenomenon that would define a generation—the AIDS epidemic. Within a year of the article’s publication, the infection rate had increased 4-fold, with case numbers and fatalities rising exponentially over the next decade.^4,5 The early reports bear an eerie similarity to the daily tallies of cases and deaths during the COVID-19 pandemic. In the midst of the current pandemic, examining iconographic and thematic representations of the AIDS epidemic over the last 35 years can illuminate the effects such a contagion can have on trust, both personal and political.

The December 1981 edition of Mandate, an erotic magazine for gay men, featured an article on the new disease with the words “Gay Cancer” plastered in hot pink over 70% of a 2-page spread in an attempted reclamation of a term that would come to shape responses to AIDS for decades.⁶ The article itself opens with a report of a “sudden outbreak within the homosexual community,” noting escalating infection rates and calling the outbreak “a menace that must be dealt with logically and quickly if we are to overcome it, and knowledge of the disease, its causes and effects, is our best weapon.”⁶ Yet by 1985, little had been done to combat the HIV/AIDS crisis. Not complacent in the face of this potentially literal erasure, lesbian, gay, bisexual, and transgender (LGBT) and AIDS activists intensified their efforts. Groups like Gay Men’s Health Crisis and the AIDS Coalition to Unleash Power (ACT UP) emerged, and, to the chorus of “FIGHT BACK, FIGHT AIDS!,” they strategically combined anger-fueled, highly visible, dramatic protesting with well-researched understandings of the disease and what it might take to treat it.⁷ As David France, director of the AIDS documentary How to Survive a Plague, stated in a 2019 interview with NPR, “They were no longer invisible sufferers of a disease. They were terrifying sufferers of a disease.”⁸ Policy changed: increased funding was devoted to research, and experimental medications became more widely available.^9,10

Our aim in this article is to gesture to some of the key moments in film that have actively shaped our cultural understanding of the AIDS epidemic and those impacted by it. We suggest that these cinematic representations serve 3 primary roles: to eulogize those who might have vanished from our collective memory, to mobilize a group by providing plague survival guides, and to humanize those stigmatized by disease.

Eulogize

Through eulogy, certain films have the power to rescue individuals from social erasure. The 1993 drama Blue¹¹ does this literally. Directed by Derek Jarman and released a few months before his death, the film consists entirely of a blue screen (representing his failing eyesight from AIDS complications) over which Jarman muses about his life as a gay man living with AIDS in London in the early 1990s. The blue screen infuses whimsy and melancholy into a narration that explores what it means to succumb to a disease that strips control. Blue, for all its dreamy quality, is infused with muted anger as it struggles to honor a complete life while acknowledging its forced erasure—both through the literal illness and through the social death resulting from the stigmatization of diagnosis and visible decline.

Transforming a patient from a statistic into a person is at the root of nearly every film made about the AIDS epidemic.

Stephen Daldry’s film, The Hours (2002),¹² offers a different sort of eulogy in a plot that follows a single day in the life of 3 women living in 3 different times and places, seemingly linked only by Virginia Woolf’s Mrs Dalloway. By drawing on this novel’s focus on mundane details in the life of a high-society, single woman in post-World War I England, the film illuminates the seemingly quotidian moments in the lives of 2 other women. These women struggle with the pain of waiting, of living when death seems inevitable and true happiness unattainable. The tension of suicide—the most extreme form of self-erasure—permeates the film, reaching a climax when one character’s ex-husband, a poet living with AIDS, throws himself from a window. His suicide serves as a reclamation of control against unceasing deterioration by illness; it prompts the film’s surviving characters to reevaluate the value of their hours and offers a Dalloway-inspired eulogy of a whole life lived and reflected upon during the hours of a single day.

If Blue and The Hours are solemnly reverential when eulogizing those lost to AIDS, the Canadian musical Zero Patience¹³ is positively bawdy. This 1993 film is unapologetically eccentric, direct, and hilarious in its quest to refute the legend of the inaccurately labeled “Patient Zero,” the Canadian flight attendant Gaetan Dugas, who was falsely believed to have spread AIDS across North America. The plot follows the eternally young Victorian sexologist Sir Richard Francis Burton as he attempts to create a museum exhibit on the origin of HIV/AIDS. Burton becomes literally haunted by Dugas, inadvertently falling in love with the ghost he is trying to vilify. The musical’s final duet is of the 2 lovers bidding each other farewell as the vindicated ghost of Dugas reclaims his legacy, disappearing in a truthful eulogy.

Mobilize

Zero Patience was written in response to the well-regarded but rather controversial 1993 docudrama, And the Band Played On,¹⁴ based on a nonfiction book of the same name by Randy Shilts. Like France’s How to Survive a Plague,⁹ And the Band Played On provides a generally accurate (if dramatized) depiction of the beginnings of the AIDS epidemic and how activists effected change. A series of documentaries released from 2011 to 2018, including United in Anger: A History of Act Up (2012),¹⁵ We Were Here (2011),¹⁶ and 5B (2018),¹⁷ sought to educate the public in self-advocacy. The release of these films reflected a growing yearning for historic instruction from the AIDS community.

Some of the most powerful movies of mobilization are fictional accounts like Longtime Companion (1990)¹⁸ or biographical dramas like Dallas Buyers Club (2013).¹⁹ Whereas Longtime Companion presents a literal timeline of the epidemic from 1981 to 1990, Dallas Buyers Club tells the story of the electrician and rodeo cowboy Ron Woodroof who was diagnosed with AIDS in the early 1980s. When faced with a medical system unwilling to advocate for him and a society all too willing to ostracize him for his disease, he smuggles experimental drugs from Mexico to Texas and distributes them to his fellow AIDS patients (for a fee, of course) while battling interference from the US Food and Drug Administration. Woodroof’s story, while spectacular in its circumstances, demonstrates the self-advocacy and self-education typical (and ultimately required) of members of the HIV/AIDS community in the early years of the epidemic.

Humanize

Transforming a patient from a statistic into a person is at the root of nearly every film made about the AIDS epidemic. From pioneering feature film Parting Glances (1986)²⁰ to the documentary Common Threads: Stories from the Quilt (1989),²¹ cinematic focus turned from primarily documenting the crisis to the telling of more intimate human stories. Few films do this as effectively and deliberately as Philadelphia.²² Released in 1993, this Hollywood production tells the story of Andrew Beckett, a gay lawyer with AIDS, who sues his former law firm for wrongful termination. Like Dallas Buyers Club, Philadelphia highlights how individual patients were forced to bear the mantle of self-advocacy during the crisis.

The 2009 drama Precious²³ uniquely pauses to examine the stories of those who are overlooked, both in AIDS narratives and in life. Directed by Lee Daniels, the film tells the bleak yet surprisingly affirmative story of Precious, an overweight, illiterate, and imaginative 16-year-old living in 1987 Harlem. She is pregnant with her second child, a product of rape by her father, and the film follows her as she escapes into fantastical daydreams in which she retreats from repeated trauma. Towards the end, Precious demonstrates astounding inner strength as she come to terms with her own HIV diagnosis. Throughout, it is clear that sometimes humanizing is accomplished not only in telling the narrative (as in Philadelphia or Dallas Buyers Club) but also in simply allowing the camera to settle on the day-to-day moments, honoring dreams and small triumphs, and not reducing a person to their social circumstances.

Humanizing is not accomplished only through stories of suffering, however. Through laugh-out-loud humor and moments of sweet and sincere connection, the 1995 comedy Jeffrey,²⁴ directed by Christopher Ashley, follows a sex-loving gay man, Jeffrey, as he navigates the fear, frustration, and irony of living in Manhattan at the height of the AIDS epidemic. He faces a dilemma defined by his fear of the contagion and his desperate need for intimacy—a plight that many of us can relate to during the COVID-19 pandemic. With the help and support of his friends, he learns to thrive despite his fear.

This is a theme threaded through many of the films canvassed here—human resilience and the importance of striving even in the face of illness and disease. Perhaps Darius, a character in Jeffrey, says it best: “Just think of AIDS as the guest that won’t leave, the one we all hate. But you have to remember: Hey, it’s still our party!”²⁴ This quotation not only represents a powerful LGBT response to AIDS, but also offers a lesson in learning how to live fully—with love, fellowship, and laughter—despite the threat of contagion.