Hektoen International

A Journal of Medical Humanities

AIDS literature: a cross cultural perspective

Clara Orban
Chicago, Illinois, United States


With the onset of Acquired Immunodeficiency Syndrome (AIDS), gay writers in the United States wrote texts disparaging the political inertia when confronting the disease, almost as though the struggle to cure AIDS were an extension of the political struggle for gay rights. French authors are often less political and more philosophical in their constructions of gay identity. In many French AIDS texts, disease transforms the body as it alters the individual; it serves as a way to explore identity as it shifts and changes. Through comparison of a few AIDS literary works in the United States and France we can see how responses to this disease become often culturally motivated.

AIDS literature has become a subgenre of literature, which, for Michael Denneny, is akin to World War I literature.1 Poets who fought in the trenches—Rupert Brooke, Edward Thomas, Siegfried Sassoon, Ivor Gurney, Isaac Rosenberg, Wilfred Owen—chose to write of the helplessness and futility of a war waged to gain inches. Their poetry, written in hurried strokes reveals an “aesthetic that requires distance and the distance is not available, not to the writer, not to the reader.” For Denneny, AIDS literature shows this devastating immediacy.

The United States and France have produced more AIDS texts than any other countries.2 To a great extent, the development of this genre has followed the spread of the disease, and has flourished in countries where a vibrant gay community existed, where AIDS was recognized early, and where research on AIDS first began. Artists started to express their frustration through literature: frustration at the devastation caused by the disease, at the slow pace of progress on the cures, and at the return of fear into a newly liberated community.3

The moralistic attitude towards Persons with AIDS (PWA) that has conditioned the political response to the disease appears often in American AIDS fiction. Authors often allude to the political manipulation of information as the disease spread.4 AIDS literature became a recognized phenomenon in 1985, with the success of two New York plays, William M. Hoffman’s As Is and Larry Kramer’s The Normal Heart. Kramer’s play tells the story of Ned Weeks, an AIDS activist who preaches an extreme response: abstinence. The play received numerous awards such as the Sarah Siddons Award for best play of the year.5 Kramer, a well-known AIDS activist and co-founder of ACT UP (AIDS Coalition to Unleash Power), later wrote political polemics about the disease such as Reports from the Holocaust: the Making of an AIDS Activist (1989).

Randy Shilts was one of the first openly gay journalists whose work exposed the political hypocrisy surrounding official responses to the AIDS crisis. Shilts’s And the Band Played On (1987) is a work of investigative journalism that tries to understand why the medical and political establishment did so little for so long to explain the disease.6 It chronicles the spread of the disease and blames the Reagan administration’s lack of political will to fight its proliferation. Even before the prologue, Shilts includes a one-page section, “The Bureaucracy,” in which he outlines the corporate structure of the government health agencies and their roles in disease control (the CDC, the FDA which monitors the blood supply, etc.). Shilts begins: “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” (xxii).7 Shilts’s text looks at structures and roles, to determine where failures occurred in the hopes of finding a pragmatic solution to a problem, a practical approach in line with American cultural models. Paul Monette’s Borrowed Time (1988) recounts the progression of AIDS symptoms in his lover, Roger Horwitz, and the entire community. Monette declares: “I don’t know if I will live to finish this. Doubtless there’s a streak of self-importance in such an assertion, but who’s counting? Maybe it’s just that I’ve watched too many sicken in a month and die by Christmas, so that a fatal sort of realism comforts me more than magic. All I know is this: The virus ticks in me.” 8

Perhaps the most wide-reaching text of AIDS literature in America comes rather late in the evolution of the genre. Tony Kushner’s Angels in America is a two part theatrical extravaganza where the AIDS epidemic intersects with the political, cultural and religious implications of a gay disease as lived in the United States during the late 80s. The political superstructure of the text appears in the title of part II, Perestroika, “restructuring,” a reference to Mikhail Gorbachev’s political reforms introduced in June 1987. It would be impossible to fully explore the intricacies of this massive “gay fantasia on national themes,” as Kushner calls it, but I will mention a few key moments. Joe, an ambitious chief clerk for a Federal Appeals court judge, a Mormon tortured by his closeted homosexuality, is also a protégé of Roy Cohn, a lawyer and Republican power broker. Cohn’s character may be the most memorable of the play. Sick with AIDS, a condition he continues to deny,9 Cohn makes a stark reflection on the connection of gay sexuality and AIDS as a political reality. When his physician tries to convince Cohn that he has AIDS, Cohn declares the political nature of his refusal to be labeled with the disease:

Your problem, Henry, is that you are hung up on words, on labels, that you believe they mean what they seem to mean. AIDS. Homosexual. Gay. Lesbian. You think these are names that tell you who someone sleeps with, but they don’t tell you that. Like all labels they tell you one thing and one thing only: where does an individual so identified fit in the food chain, in the pecking order? Not ideology, or sexual taste, but something much simpler: clout. Not who I fuck or who fucks me, but who will pick up the phone when I call, who owes me favors. This is what a label refers to. Now to someone who does not understand this, homosexual is what I am because I have sex with men. But really this is wrong. Homosexuals are not men who sleep with other men. Homosexuals are men who in fifteen years of trying cannot get a pissant anti-discrimination bill through City Council. Homosexuals are men who know nobody and who nobody knows. Who have zero clout. Does this sound like me, Henry? (Part I, 45) 10

This rationale provides the basis for the play’s critique of the political reality of AIDS. Politics provides the backdrop for the play because during the Reagan years, funding for the disease was minimal, and public discussion was largely stifled when AIDS seemed limited to the gay community. In America it seems as if only through political action can scientific progress occur. Even getting experimental drugs depends on being politically connected; Roy Cohn has managed to get a supply while other patients in the hospital go without. Only Belize, the wise empathetic gay nurse, breaks through the political stalemate and redistributes Cohn’s drugs to others. Cohn uses his clout to get the “real AZT” drugs as opposed to the placebos he may be given in the double blind study of the drugs’ effectiveness. But he receives so many bottles of the medication Belize knows he will not miss a few of them. Meaningful treatment depends on political connections. Kushner suggests increased activism, even at the local level as evidenced by Belize’s intervention in the hospital, will make the difference. Perhaps Kushner paints the AIDS epidemic in a very American way, showing how cultural and medical responses depend on politics. 11

In France, the best known author of AIDS literature is Hervé Guibert. He seemed to despise his family, except for two great-aunts, Suzanne and Louise, sisters ten years apart in age. Guibert identified with them in his body, as he poignantly mentioned in his late works. Through his body submitted to the viral infection that would kill him, he saw himself decay. As his body withered away, he wrote that he was beginning to resemble the two octo and nonagenarian aunts physically as well as spiritually. He also produced La pudeur ou l’impudeur (Modesty or Immodesty), in which he filmed himself from June 1990 to March 1991 dying of AIDS, focusing the camera on his dying body, his attempt at suicide, and his musings on life.

Guibert’s works can in some regards be divided into two periods, before and after he acquired AIDS. When he was diagnosed with AIDS in 1988, his works began to confront the disease, and the disease in him, head on. Some of his most famous works, To the Friend Who Did Not Save My Life, The Compassion Protocol, The Man with the Red Hat, and Cytomegalovirus: A Hospitalization Diary, deal with coming to terms with the illness, attempts at experimental treatments, the search for treatments not yet readily available legally, and facing the prospect of blindness due to cytomegalovirus, with the impending impossibility of continuing to write. 12 The pen and the IV line are both lifelines in the hospital as he waits for a cure. Sexuality is part of the narrative when the body is well; decay becomes the centerfold when the body is dying.

Guibert’s sexuality clearly defines from the outset his identity as a human being and as a writer. Creating auto-fictions about gay sexuality means recreating his own biography, viewing it through distorting lenses, but revealing it clearly through others. But, unlike most American gay writers, Guibert does not write about gay sexuality as a way to politicize sexuality or as a way to confront heterosexual hegemony. Instead, Guibert takes for granted, in some sense, that sexual identity means desiring bodies of the same sex. The disease that killed him also became a marker of a new phase of bodily identity: he was a young man in his thirties trapped in an elderly, decaying body.

For Guibert, AIDS is the paradigm in the project to uncover the self. AIDS represents a way of structuring the work of writing, which will be the path to uncovering identity. To the Friend Who Did Not Save My Life, recounts Guibert’s friends and lovers who are dying or have died of AIDS, his own awareness of what the disease was doing to his body, and his struggle to come to terms with death all the while searching desperately for a cure. The narrator recites the chronology of his probable infection with the virus eight years before. This disease becomes a structuring core of his life:

In this eight year chronology that encompasses and sweeps away illness, even though we now know the incubation period is between four and a half and eight years according to Stéphane, physiological accidents are no less determinate than sexual encounters, nor the premonitions of illness that one tries to erase. 13

As he chronicles his realization that he is infected with HIV (human immunodeficiency virus), Guibert states that the whole enterprise of writing exists in the realm of failure, or of potential failure: “The book’s only reason for being comes from this borderland of uncertainty common to all illness”. The hope of the promised but not delivered cure becomes precisely what the narrator needs to continue writing which is the goal of the last period of his life. Writing becomes a way to understand the illness in all its manifestations. For Guibert, AIDS spurred self-discovery.

In To the Friend Who Did Not Save My Life, centered on a disease and the body, politics plays a scant role. In some sense, Guibert explores the limits of activism. The friend does not help, does not save his life. Guibert confronts the disease through writing but almost never through politics. Although the French National Health Service is a government-run agency, meaning that the availability or lack of drug treatments and experiments to cure new diseases is directly linked to political interest, Guibert does not indulge in criticism of the politicians in charge of health care in France during the late 80s when he is seeking a cure. 14 In this book, Guibert addresses AIDS as it affects him personally, and does not see the disease as a manifestation of a political identity.

In some ways this is contrary to our stereotypes: French culture is often considered highly politicized, whereas American culture seems more apathetic by comparison. But in gay literature, perhaps, the opposite is true. If we think, for example, of Cyril Collard’s Les nuits fauves, another central text of French gay literature, the main character struggles to confront his selfishness in the face of his HIV positive status. He knowingly has sex with a female lover, hoping that “he will be saved,” a phrase that often arises in the work to suggest the character’s essential loneliness in the face of a disease he cannot cure and that sets him apart from everyone else. Collard’s character as in Guibert’s negotiates the disease as a reflection of an identity crisis, with virtually no mention of the political reality behind the epidemic. 15

Interestingly, however, AIDS has left a lasting mark on French politics. A political scandal erupted when an upper level politician, Laurent Fabius, was convicted of having allowed tainted blood into the blood supply in the earlier days of AIDS. Although an American test for AIDS in the blood supply was available, the French government waited for the French test to be developed. In the six to nine intervening months, hundreds of people who received transfusions were infected. The United States had not lived a similar “affaire du sang,” (the “blood affair” as the French media calls this scandal) despite the tainted blood supply during the same years. There were local scandals such as the resistance to closing gay bath houses in San Francisco in the early days of the epidemic, or the race between the National Institutes of Health and the Pasteur Institute to claim credit for discovering the virus, but there has been no national scandal in the United States. 16

It seems political responses to the disease in both countries have also been culturally motivated. Silence reigned in the US until Hollywood “got AIDS.” In France, political corruption and ineptitude led to political disgrace. In literature, however, American gay writers used their texts to express anger at the political and cultural establishments that allowed them to die of AIDS. In France, having AIDS is a tragic development that changes identity. By examining how other cultures have talked about a disease that carries social markers we can see to what an extent responses to this disease are culturally motivated.

Literature about AIDS is unique in that it brings the voice of the one who is suffering a terminal illness to bear on posterity. Unlike “pathographies,” written by patients often from the vantage point of having survived, AIDS narratives are imbued with the sadness of impending death. They are filled with characters that often crave more time for they know there is none left to them. Common to these texts is a feeling that compassion is lacking, that only other AIDS sufferers can understand.



  1. Michael Denneny, “AIDS Writing and the Creation of a Gay Culture,” in Confronting AIDS Through Literature: The Responsibilities of Representation. Champaign: University of Illinois Press, 1993. 36-54.
  2. Much information concerning AIDS literature around the world is available in The Gay and Lesbian Literary Heritage. A Reader’s Companion to the Writers and their Works, from Antiquity to the Present. Ed. By Claude J. Summers. NY: Henry Holt and Company, 1995.) For reasons of space, I will concentrate my efforts on the two countries which have seen thus far the greatest proliferation of AIDS literature.
  3. Gay liberation was a recent phenomenon in the US before the onset of AIDS. The politicization of homosexuality in many ways dates from the Stonewall Rebellion of 1969, when gays fought back as police raided the Stonewall Inn in New York.
  4. Public consciousness towards AIDS in the United States was roused at the death of Rock Hudson. During the Reagan years, much confusion existed concerning AIDS, its transmission, and its scope, unfortunately exacerbated by a scientific war to produce an AIDS vaccine largely between the 2008 Nobel Prize winner Luc Montagnier of the Pasteur Institute in Paris and Robert Gallo of the Center for Disease Control. In 1985, when Rock Hudson, the manly, charismatic actor, personal friend of the president, was reported to have died of AIDS, the public was shocked to learn of his sexual orientation. That he died of AIDS led to the disease being discussed more openly than it had been previously. Since AIDS was seen as a gay disease, at least until the 1990s for the most part, and since gays were almost simultaneously struggling for political identity, American authors often create AIDS texts in which the political realities of the crisis loom large.
  5. Gregory W. Bredlock, 421.
  6. Claude J. Summers, 659.
  7. Randy Shilts, And the Band Played On, 1987.
  8. Paul Monette, On Borrowed Time, 1988.
  9. Cohn says he’s dying of liver cancer when asked, and insists the hospital staff continue to provide that official diagnosis.
  10. Tony Kushner, Angels in America, Part I.
  11. One of the most interesting aspects of the play is it’s portrayal of the Mormon Church, an American-born religion.
  12. This condition was particularly devastating to Guibert, also a photographer
  13. Hervé Guibert, To the Friend Who Did Not Save My Life, 1990.
  14. are references to politics mention Bill’s dealings with the Reagan administration.
  15. Collard was also the star of the film based on the novel, which drew far more attention than the novel, since it received a prize at the Cannes Film Festival awarded as Collard was dying.
  16. Hélène Cixous has written a play about the scandal, The Perjured City.



 CLARA ORBAN, PhD is a Professor of French and Italian at DePaul University, Chicago.  She is also a member of our Editorial Board.


Highlighted in Frontispiece Winter 2009- Volume 1, Issue 2

Winter 2009  |  Sections  |  Infectious Diseases

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.