Literature and Healthcare

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If dialogue—sophisticated, passionate, often angry dialogue— is the mark of a lively field of inquiry, then the study of creative literature is thriving. Central to the dialogue has been the question of the relation, if any, of literature to the world outside itself—that is, to the so-called real world of culture, politics, and ethics. Some of the most influential philosophers of literature (e.g., Derrida; see also Belsey) have been warning readers that they can no longer go to the classics of literature to mine gold nuggets of knowledge about life. Ironically, all this has been happening at the same time that certain prominent ethicists have been rediscovering the moral value of literature while speaking of "virtue" (MacIntyre) and—most prominently—"narrative ethics" (Hauerwas and Burrell; Nelson, 1997; Chambers; Charon and Montello). Have literature and ethics passed each other in the night? This much is clear: Before anyone can speak responsibly of the relationship of bioethics to literature, it is necessary to understand the general terms of the literary professionals' fight about meaning.

Theoretical Contexts

Of course, the agitation is far more complicated than it will appear here in a nontechnical summary. But the commentators can fairly be divided into two loose groups called valuesoriented and language-oriented theorists. This distinction is related to the ethics/aesthetics, art for life's sake/art for art's sake, and content/form divisions of the past in that the first term of each pair (values, ethics, life, content) encourages the use of literature as a tool for living a good life, and the second term (language, aesthetics, art, form) points to a view of literature as an important end in itself. But today's values/language debate, particularly the language side, is by no means strictly congruent with past positions. Values-oriented people can be taken to include those who believe that the relationship between literature and ethics can be richly productive of change in individuals and society; the language-oriented group includes those who believe that, given contemporary understandings of language, such a relationship is an illusion. Thus far, the language theorists have prevailed— if not in the classroom, then certainly in the scholarly conferences and journals as well as in the commercial reviews.

VALUES-ORIENTED THEORIES. The values side has nevertheless been accorded intelligent attention, too, and their side is showing strong signs of renewal (Booth, 2001). Using various technical terms for values in literature (e.g., classic realism, hermeneutics, ethical criticism, and moral imagination), literary commentators have: (1) suggested that, in the words of Mark Twain, the reports of their death have been greatly exaggerated and would, in any case, be disastrous for both literature and society (Graff); and (2) proclaimed that moralists may very well have died but should be resurrected and readmitted, within certain limits, to the practice of criticism (Booth, 1988). Influential endorsement for the values-oriented position has also come from outside literature. Most notably, the philosopher Martha C. Nussbaum has insisted in a string of influential books that literary narratives of ideas and emotions constitute an essentially—and, for her, sometimes the solely—adequate depiction of ethical dilemmas. Another philosopher, Geoffrey Galt Harpham, agrees. And psychiatrist Robert Coles has championed the traditional view of literature as balm for the human spirit.

The complete history of values-oriented critics must make space for the two towering figures who, in the first half of the twentieth century, took up the mantle of the English poet and critic Matthew Arnold (1822–1888) to proclaim that a commitment to individual and social morality was the mark of supreme writers. In 1967 F. R. Leavis wrote in The Great Tradition that the finest novelists "are all distinguished by a vital capacity for experience, a kind of reverent openness before life, and a marked moral intensity" (p. 9). And Lionel Trilling, whose influence in the United States was once as widespread as Leavis's in England, said in The Liberal Imagination: "For our time the most effective agent of the moral imagination has been the novel of the last two hundred years" (p. 209).

Today, the two men are ignored or reviled by many of the most famous critics of literature. To some of them, Leavis's and Trilling's classics-minded disciples share part of the blame for enthroning the traditional academic canon— largely produced, in the now infamous phrase, by "dead, white, male writers"—as opposed to a more flexible list that is open to writers of both sexes and those of multicultural origins. The followers of Leavis and Trilling are among those who have been tagged as "liberals" and "humanists" by self-proclaimed "radicals" of the Marxist, African-American, and feminist schools of literary criticism. But, if examined closely from the perspective of this entry, these arguments are all in the family—the family of literary critics whose guidelines promote discussions of values. So are the arguments of the so-called reader-response critics, such as Wolfgang Iser, who locate the meaning of literature in the interaction between the text and the reader, and, probably, even the "formalists" of various stripes (e.g., Mikhail Bakhtin), who emphasize form over—and occasionally at the expense of—content.

LANGUAGE-ORIENTED THEORIES. The true opposition to the values-oriented approach comes from the theorists who, under several different banners (most often "semiotics," "deconstruction," and, according to some definitions, "postmodernism"), deny that literary texts have an objective relationship to the world outside themselves. The founding father of these language-oriented thinkers is often said to be Ferdinand de Saussure, whose revolutionary book, Course in General Linguistics, was published in 1916 and is still being analyzed for its contributions to literary studies. Paul de Man, Roland Barthes, and Jacques Derrida are other influential writers whose theories undermine literature's direct contribution to ethics.

The basis of their position, which is introduced by Catherine Belsey, is roughly this: Contrary to the empiricistidealistic tradition that language, and therefore literature, is a reflection of the real world of facts, objects, and transcendent states of being, language is arbitrary and constructed solely by cultural convention. Language does not name things that are already in existence, but is, instead, responsible for a person's recognition of distinctions in what would otherwise be a blurred continuum. If, for instance, our language recognizes a difference between the color blue and the color green, we will see a line on the horizon over land. If there is no such distinction, the sky will melt into the earth. In other words, the language-oriented literary critics say, we cannot experience the world except through language; there is no reality except for language. In effect, we are prisoners of the languages we understand, for language structures our world.

None of these ideas is remotely startling anymore. But trouble arises when they are logically extended, because, with these ideas in place, it is foolish to speak of a literary text as possessing any "truth" about ethical matters or about an empirical world in which ethical matters must be considered. Language is not related directly to the world, but only to other language, texts only to other texts. Does this post-Saussurean conclusion leave any room for ethicists seeking help from literature? For the most extreme of the language theorists, the answer is "very little." They would grant that literature might portray people making moral decisions or, at most, shame readers into feeling "a little ethical flutter, a little frisson" (Bly, p. xix). But they would add that because language by itself has no agency—that is, no power to bring anything about in the real world—then neither has literature.

For bioethicists, what is finally important about the maelstrom of contemporary literary/linguistic theory is that, first, whether they acknowledge it or not, people who think about bioethics and literature (e.g., Brody, 1987, 1992; Jones; Brock and Ratzan; Clouser and Hawkins) generally derive their theoretical justification from the values-oriented thinkers, and, second, these ethicists are thereby ignoring the dominant literary epistemology of recent decades.

The Ethics of Literary Form

To be sure, there have always been routes through literature to ethics that circumvent the entire values/language debate. A number of these routes are a matter of form as opposed to content.

THE STUDY OF NARRATIVE FORM. Chief among these routes is the form called "narrative" or "story." Narrative is not exclusively literary: Writers from nearly every academic discipline have asserted that human beings tend to perceive life not as isolated ideas, facts, or problems, but as stories— series of plotted events involving characters and told from certain perspectives. In literature, the study of narrative form has become highly sophisticated (Martin; Newton), and literature-and-medicine scholars have participated in its development (Hunter, 1991). Narrative ethicists use the narrative paradigm to counter, or at least to supplement, an ethics based solely on abstract principles (Reich; Clouser and Hawkins; Nelson, 1997; Charon and Montello). In other words, narrative ethics is an attempt to return ethical dilemmas to the messy, complicated lives from which they arose and to plumb those narrated dilemmas with other stories that are coherent and meaningful.

Narrative ethics usually stops there, and it should not. No one looking to literature for moral anecdotes should think that the task is complete when they are found, for the narrative form itself may present—or, more commonly, mask—ethical problems. Most ethical problems derive from questions about the adequacy and authority of what is called the "narrative point of view." Whether a story is oral or written, whether it is from life or art, the audience needs to know the narrator's angle of perspective. That is, who is telling a particular story, and what constitutes his or her authority for doing so? Did the narrator witness the events related or is the report secondhand? Is the narrator deeply involved with the events, distant from them, or perhaps not able to understand them? T. Hugh Crawford points out that one needs to determine the narrator's social privilege, which, in the case of physicians, may be so great that the truth of their stories will go unchallenged. An ethicist should also realize that the narrator always functions as an editor and therefore inevitably omits some elements of the imaginary "complete story" that may have a substantial moral impact. A second set of questions should concern the audience to whom the narrator directs the story, for the tale will be adjusted accordingly.

The questions become more complicated when a story is written, more complicated still when it is part of literary art. For instance, the narrator must not be unthinkingly identified with the real man or woman who composed the story, especially when the story is written in the first person, or even when authors use their own names for the narrators. The doctor who narrates the William Carlos Williams stories about patients in Rutherford, New Jersey, where the author practiced medicine, is not the same person as the Dr. Williams who made house calls or the Bill Williams who was Floss's husband; for the simple truth is that the author is never precisely the same as the narrator. Medical ethicists, writing about paternalism in Williams's famous short story "The Use of Force" (1933), do not always make this distinction, and their conclusions are thereby less precise.

Nevertheless, most literary narratives are written in the third person (e.g., "Sid was thinking that the surgeon seemed unresponsive"). It is an ethical, as well as an aesthetic, question to ask whether the narrator is positioned inside Sid's head, as it were, and therefore knows authoritatively only what Sidney knows, or whether the narrator also knows that "the surgeon was thinking about Sid's gall bladder," that outside "the wind was pushing the fall leaves around the parking lot," and that in the world at large "it was the worst of times." The first kind of narrator is technically a "concealed narrator" or "center of consciousness," the second an "omniscient narrator." Fashion in the twentieth and early twenty-first centuries has favored the first kind for its epistemological and ethical qualities because the omniscient narrator's sweeping knowledge is suspect. In the United States, especially, people tend to balk at according anyone— a president, a spouse, a doctor, a narrator—that kind of power.

These sticky questions about narrators lie in wait for medical ethicists when they are using their favorite narrative form, the case history. When "participant–observer" David Barnard published an extended case history, his intentions were to broaden the social and temporal bases from which ethical decisions are made and to show that a given illness affects the caregivers as well as the patient. He achieved these goals, but literary critic Eric Rabkin challenged the form of the case, asserting that Barnard-as-narrator and the physician, Valerie Walsh, had unconsciously produced "a story in which each could be the hero" (Banks, et al., p. 52). The resultant furor, summarized by Barnard (1992), who later(2000) accepted the criticism as valid, has helped to clarify the ethics of narrative form, but some aspects are still underexplored.

THE IMPORTANCE OF GENRE. The study of narrative is only one of the important ways to understand how literary form affects ethics. In fact, an awareness of what genre a given work falls into—is it a story or a play, a comedy or a tragedy?—is almost always important for the ethicist. Because drama, for instance, is distinguished from other literary forms by virtue of its dialogue and conflict, perhaps ethical conflicts should be presented in dramatic form rather than in narrative case histories. Not only would the various positions on a problem be fully embodied in the individual language of each "character," the format would also encourage the greater objectivity for which drama has a reputation. An argument can also be made that great plays and their first cousins, films, ought to be studied by ethicists to sharpen their awareness of not only dialogue and conflict but also such matters as role, costume, setting, set speeches, and audience reaction, because all of these factors change the moral climate of any scene from life. It would not matter whether the play chosen was specifically about bioethics or not. Any good play would serve the ethical goals (Banks, 1990).

Genre also affects more pervasively and subtly, because genres are, finally, forms that cultures select to convey their deepest values. Granted, for language-oriented theorists, the traditional distinctions among the genres have blurred— even disintegrated. Texts are texts, no matter what the form. They refer solely to other linguistic productions in an endless line of what literary critics call "intertextuality" and "subjectivities." These are important concepts. Nevertheless, traditional genres yield valuable information for ethicists. For example, the form of Greek tragedy inevitably introduced certain ethical values. One of the most troublesome for modern individualists is the widespread attitude toward fate (often personified as the vengeful Erinyes, or, in Rome, the Furies), whereby the Greeks believed that once a sequence of events had been set into motion, human beings had no ability to prevent its outcome. Once Oedipus had unknowingly killed his father, he was destined to marry his mother. Furthermore, he had to be punished for these acts even though he had no evil intention. That is, in order for the good to triumph in the ultimate balance of the universe, all those who had done wrong, whether consciously or not, had to pay. Like all great artists, Sophocles (c. 496–406 b.c.e.) lived in creative tension with what conventional form forced upon him: His Oedipus sees himself as free enough to be blamed and to inflict his own punishment by blinding himself. Nevertheless, a belief in what might be called the "Greek tragic plot" not only affected ethical decisions—in a sense, it precluded them. Though less confining, certain ethical perspectives are already inherent in modern authors' affinity for mixing the traditional genres, as in "tragicomedy" and "docudrama." We may be too sophisticated to separate the serious from the funny, the real from the make-believe; or—and here is the ethical issue—we may be too confused to understand the difference.

AN EXAMPLE FROM SHAW. If literary form may thus limit ethics, form may also free it. The British playwright George Bernard Shaw's The Doctor's Dilemma can serve as an efficient illustration of both capabilities. Next to Williams's "The Use of Force," Shaw's play is probably the most oft-cited example of medical ethics in literature (see, e.g., Brody, 1991, on teaching Shaw in an ethics class). Shaw, of course, was a first-rate comic writer: The pompous, ignorant, and fee-grabbing physicians in this play are squarely in the tradition of the hilariously unethical doctors created by the seventeenth-century French playwright Molireè. But Shaw was also a playwright of great moral passion, an unabashed didact who mounted theatrical soapboxes to preach his ideas about social reform. The play form simply did not give this second Shaw enough room. Therefore, to most plays he published, he attached an essay of polemical prose that allowed him to go over much of the same material in a different literary form. In the case of The Doctor's Dilemma, this material was medical ethics.

The two forms, preface and play, dictate two startlingly different takes on the same ideas. Whereas the preface requires precision, the play requires ambiguity, or, more accurately, encourages it. In the play, Sir Colenso Ridgeon, who has recently discovered a successful treatment for tuberculosis, is forced by limited resources into deciding whom to treat and whom to allow to die. Specifically, he must choose between a poor, worthy—and dull—doctor, and a poor, reprehensible—and uniquely brilliant—artist. The situation is complicated by Sir Colenso's amorous feelings for the artist's wife, whom he imagines as an available widow. That is the dilemma of the title. Sir Colenso resolves it by treating the doctor. His justification for this action is that because the artist has no moral integrity, he, Sir Colenso, is saving the wife from discovering her husband's deceit and killing herself, as she has threatened. When he reveals his reasoning to the wife, now the widow, she accuses him of murder. In reply, he justifies his actions by citing Arthur Hugh Clough's satiric poem, The Latest Decalogue: "Thou shalt not kill, but needst not strive/Officiously to keep alive."

Shaw's play raises more questions than it answers. When he writes polemical prose, Shaw argues easily, logically, and from an unshakable moral perspective. But when he takes ethics into the personal realm of drama, he cannot manage equally clear conclusions. So the play, as distinct from the preface, reverberates with moral ambiguity. Sir Colenso and an older, sensible physician soundly debate the central dilemma—but no conclusion is drawn by Shaw. Similarly, Sir Colenso's decision is padded with ethical red herrings. When, with no apology, he recommends as a physician for the artist a man of eminent reputation but shameful ignorance, Sir Colenso is behaving in a superficially licit manner that serves to distract him from the ethical problem. What the playwright does face directly is that ethical decisions in medicine are difficult to sort out logically; that no physician alone, or even in consultation with other professionals, can make them on objective grounds; that the results, when allocating limited medical resources, will be a type of murder; and that these burdens are too much for one person to bear.

For Shaw the playwright, then, the dilemma of who shall live and who shall die cannot be answered without dishonor and tragedy. (He calls this play, and this play only, a tragedy.) For Shaw the political philosopher, the same question is answered in terms that, by contrast to the subtleties of the play, are chillingly clear. He asserts in the preface that "invalids, meaning persons who cannot, beyond reason, expect to be kept alive by the activity of others," must be allowed for social reasons to die. "The theory," Shaw concludes firmly, "that every individual alive is of infinite value is legislatively impracticable … the man who costs more than he is worth is doomed by sound hygiene as inexorably as by sound economics" (pp. 86–87). And that's that.

Abortion and AIDS, among Others

Shaw, Williams, Molireè: These names are the beginning of a long, long list of first-rate creative writers who have narrated, dramatized, and, in general, illuminated specific topics of bioethics. Hundreds of other names and their works could be added. A partial roll call of the most useful would include Tobias Smollett's The Adventures of Roderick Random (1748), Herman Melville's White-Jacket (1850), Anthony Trollope's Doctor Thorne (1858), George Eliot's Middlemarch (1871–1872), Georg Büchner's Woyzeck (1836), Henrik Ibsen's An Enemy of the People (1882), Sinclair Lewis's Arrowsmith (1925), Albert Camus's The Plague (1948), Peter Nichols's A Day in the Death of Joe Egg (1967), Joyce Carol Oates's Wonderland (1971), and Peter Shaffer's Equus (1973).

In the first bibliography of literature and medicine (Trautmann and Pollard), which annotated about 1,400 literary works from classical to contemporary times under thirty-nine categories, ethicists can check for information not only under "medical ethics" but also under "abortion," "euthanasia," and "evil doctors." The years since the bibliography's publication have, of course, added more authors, and many more works, to the inventory of resources. It is intriguing that the years have also changed the categories. Among the bibliography's topics, "age," "handicaps," "mental retardation," "plague," "suicide," "venereal disease," and "women as patients" have taken on extensive political, and therefore ethical, implications. New categories have emerged too. "Cross-cultural," for instance, must be clearly distinguished from the old "poverty and health"; "AIDS" deserves its own category, having grown beyond "plague" and "vene-real disease" (which itself has developed into "sexually transmitted diseases").

Bibliographic assembly for literature and healthcare has, since 1993, been under the direction of Felice Aull at the New York University (NYU) School of Medicine. Aull and a large board of editors and annotators have brought their subjective, interactive, and regularly revised bibliographic work where it needs to be—to the Internet. The NYU group has tripled the number of Trautmann and Pollard's subjects and mirrored the movement in literary criticism toward cultural studies, thereby broadening the definitions of text and literature to include, for example, film and the visual arts. Following the trend in ethics, medicine has also been broadened to include not only nursing but also all the newer healthcare professions.

Along with the expansion of creative work about bioethics, the field of literature and healthcare has seen an enormous growth of books about these works. The studies are generally about topics and people at some distance from U.S. culture's centers of power: the feminist body (Grosz); disabilities (Thomson); aging (Wyatt-Brown and Rossen); pain (Scarry; Morris); and caregivers (Poirier and Ayres).

To demonstrate precisely how literature illuminates bioethics, it might be helpful to analyze, first, a traditional work on an established ethics topic—in this case, abortion— and, second, a group of fiery works about a newer topic, AIDS.

ABORTION AND THE CIDER HOUSE RULES. One of the most important novels on U.S. medical ethics is John Irving's The Cider House Rules, which was made into an influential film that was released in 1999. Morality—the metaphorical "rules" of the title—is its central concern, specifically the morality of abortion before Roe v. Wade, the 1973 U.S. Supreme Court case that established abortion's constitutionality. One of the book's two main characters is Dr. Wilbur Larch, who performs illegal abortions at the orphanage he has established in a remote area of Maine. He offers women a choice—an orphan or an abortion. The other character is Homer Wells, one of those orphans, who, as a young man, is an ardent antiabortionist, able to articulate arguments in opposition to Larch. But, in the end, breaking his own and society's rules, Homer assumes a medical identity that allows him to take over Dr. Larch's practice.

As is so often the case in life, Homer's position begins with an image rather than an idea. At the age of thirteen, Homer sees a dead, nearly nine-month-old entity, whom Dr. Larch wants to call a "fetus," but Homer feels compelled to call a "child." After that, Homer immediately links any argument from Larch about "the products of conception" before the quickening to the image of the dead baby. Now the pictures of even the eight-week-old fetuses in Gray's Anatomy strike Homer as having an "expression," or, the narrator tells us, what other people call a "soul."

Nor is Dr. Larch initially won over to abortion by arguments. As a medical student, Larch sees for himself the damage inflicted on women by the alleyway butchers and poisonous aborticides. He stares into the dead face of a woman to whom he had refused an abortion. He witnesses the deprivations of orphans. Later, Dr. Larch adds reason to his emotions. He has a large array of arguments at his command, including, for instance, his disgust at someone "who cares more for the misgivings suffered in his own frail soul than for the actual suffering of countless unwanted and mistreated children" (Irving, p. 260). He presents another argument that finally convinces Homer. Written in a letter, it reads: "If abortions were legal, you could refuse—in fact, given your beliefs, you should refuse. But … how can you feel free to choose not to help people who are not free to get other help?" (p. 488).

These characters, these events, and these ethical concepts are all embedded in a form that must be described and its intimate connection to the ethical content made plain. Basically, the form is adapted from the nineteenth-century, realistic, English novel because it suits Irving's traditionalism— his sense that fiction has as its chief mission the examination of values. In that regard, his model is surely Charles Dickens. The Cider House Rules has Dickensian size. Like a Dickens novel, it is openly concerned with individual and social ethics. Every night, Homer reads Dickens's David Copperfield or Great Expectations to the boy orphans, who unquestioningly accept the novels as portals to morality.

To the girls, by the way, Homer reads Charlotte Brontë's Jane Eyre, whose orphan heroine is blatantly offered as a role model—and is sometimes blatantly rejected. Jane's sweet optimism is too much for one angry, world-weary orphan. In a vividly comic instance of what scholars such as Wayne C. Booth and Nussbaum would be forced to call "ethical criticism," the hulking, teenaged orphan demonstrates the power of literature:

"Even for me [chirped little Jane Eyre], life had its gleam of sunshine."

"'Gleams of sunshine'!" Melony shouted in violent disbelief. "Let her come here! Let her show me the gleams of sunshine!" (Irving, p. 84).

From the nineteenth century, too, comes the novel's narrative voice. It is omniscience, moving freely in and out of any character's mind and making such general observations as: "Society is so complex that even [the little town of] Heart's Haven had a wrong part to it" (Irving, p. 125). The narrator knows everything in this created world. If he (let us say) can build an aesthetically convincing world, readers may believe he knows a great deal about the real world, too. Irving has tried to buttress the authority of his novel's narrator by appending the scholarly apparatus of endnotes. Tied to certain pages and narrative "facts," these notes assert that Irving has researched his material. He has read medical texts, both old and modern. He has consulted with physicians, including one of the canonical authors in literature and medicine, Richard Selzer. All the evidence points to this author being very serious about the real world, a valuesoriented thinker as described earlier, rather than one for whom language is a closed system.

Irving writes tragicomedy. One distinguishing mark of an Irving novel (the most successful was The World According to Garp [1978]) is that, after much humor, someone innocent dies. This is Dickensian too: Think of Little Nell in The Old Curiosity Shop. As noted earlier, the mixed genre of tragicomedy is a favorite twentieth-century form, and cultural critics are still sorting out its implications. More and more, tragicomedy seems appropriate to the creative literature of medical ethics because the genre deals simultaneously with patients' tragic losses and caregivers' need to continue in spite of them. Tragedy ends something, but comedy always implies continuation, and the two are interdependent. Here is a literary lesson that bioethicists, whose "quandary ethics" proceeds from an exclusively tragic premise, have yet to learn. As that wily moralist, Shaw, has Dr. Ridgeon say in The Doctor's Dilemma, "Life does not cease to be funny when people die any more than it ceases to be serious when people laugh" (p. 185).

SEVERAL WORKS ABOUT AIDS. Literary writers have responded to AIDS faster and more often than to abortion. They have also tended to leap more aggressively from art to ethics. Taken as a group, the narratives, plays, poems, films, and critical essays about AIDS (see Nelson, 1992, for a bibliography) are fervently contesting the ethical boundaries of language itself. For a start, some of the creative writers and critics who write about AIDS are activists. Larry Kramer, author of The Normal Heart, was an early and loud voice. These activists insist that the first goal of AIDS literature must be to change the critical circumstances of the disease and its sufferers. They call for "stridently interventionist cultural practice" (Nelson, 1992, p. 8, citing Douglas Crimp). They say that to write about AIDS at all is automatically to be a moralist, for, in this battle, no sidelines exist. Demurrers about art for art's sake are irrelevant and themselves immoral. So one question about activist AIDS literature is: Does such work fit into the artistic genre called "social realism" or is it not art at all, but, instead, blatant propaganda whose first and last goal is social change? To the first category, literary historians have assigned, for instance, Ibsen's An Enemy of the People, which is an ardent piece about an idealistic doctor's crusade to warn tourists about his town's polluted public baths in the face of community pressure, as represented by his brother the mayor, to keep his mouth shut. The play is comparable to Kramer's The Normal Heart, in which another doctor battles to get money for AIDS research in a New York whose mayor seeks to prevent would-be tourists from knowing about the epidemic. But where do we draw the line between taking a stand and propaganda, wherein the end shapes, even justifies, the means?

What might any writer, activist or not, be excused for saying in order to bring about a desired end? What language— which images, which metaphors—may validly be used to inflame audiences with a just passion? One of the most common metaphors for the AIDS epidemic in the homosexual community is the Holocaust (e.g., Nelson, 1992), which was said in the early days of activism to be recurring through the establishment's lack of a plan to prevent the genocide of gay men. Is this horrifying image apt? Is it logical? Alternatively, are these questions themselves out of place in view of the absolute primacy, for some people, of subjective data about illness?—that is, "I have AIDS, and it feels as though I am living through another Holocaust. What do you know about it?"

The morality of metaphor is the territory famously covered by Susan Sontag in Illness as Metaphor (1978). There she argues that to substitute metaphors, especially negative metaphors, for the reality of bodily suffering is to impose a spurious meaning on illness and a sense of guilt on the patient. If cancer, in the common military metaphor, is a battleground, then the patient can be blamed for not winning. Sontag comes back to her point in AIDS and Its Metaphors (1989), where she contends that "plague," the most common metaphor for AIDS, implies judgment on a corrupt society. In her own story about AIDS, "The Way We Live Now" (1987), there are no metaphors for the illness. Moreover, in what would seem to be a further attempt to free AIDS from contaminating linguistic associations, she does not even name it.

Sontag's reasoned approach to this crisis is similar to the theories of the German playwright Bertolt Brecht (1898–1956). Unlike the AIDS plays, most of which are designed to be deeply cathartic, Brecht's plays aimed for the "alienation effect" in order to limit his audience's emotional involvement in the work. He used various devices to remind audiences that they were watching illusion, not reality—a play, not life. This distancing, he hoped, would free their minds to reason clearly that humanitarian action was needed in the world outside the theater. A former medical student, Brecht wanted to achieve the theatrical equivalent of clinical objectivity. His goal, like that of AIDS activists, was to change society, but, unlike some of them, he thought it unethical to reach minds by manipulating emotions.

In arguing against metaphor, Sontag seeks to chip away at the use of language as a shield to protect people from difficult experience. Given the symbol-making nature of the human mind, she has chosen a position that finally may be impossible to defend. She seems to know that, and yet she thinks it eminently worthwhile to fight for the "thereness" of the human body, for the indisputable fact of its physical presence. So does literary and film critic James Morrison, who is worried that postmodernism (read: "language-oriented thinking") has infected criticism about AIDS literature. Defining allegory as "a series of metaphors arranged in sequence" (Nelson, 1992, p. 169), Morrison complains that the postmodern attraction to allegory—that is, to expressing experience as an abstract text that refers only to other language and not to the real world—has moved readers further away from the actual experience of AIDS. In his eyes, allegories dictate that both AIDS and the person with AIDS be classified as "other"—something, at any rate, that cannot be approached without the intervention of elaborate figures of speech. The allegory to which he objects most vehemently is the series of metaphors that describe the body as text. When logically extended, he says, such an allegory would allow someone to "read," as it were, "the lesions of Kaposi's sarcoma as indexical signs" of the body-book (Nelson, 1992,p. 171). This he thinks a ludicrously unsympathetic way to approach the body in pain.

Morrison may not realize it, but his challenge implicitly goes out to the scholars in the interdisciplinary field of literature and medicine for whom the patient-as-text is both metaphor and method. He might just as well challenge every one of us, because the process of abstracting that he condemns in the case of literary criticism and AIDS seems to be a universal human phenomenon. The combined evidence of the writers examined here suggests that all of us are trapped between our suffering bodies and our symbolizing minds— that is, between a world whose existence we can prove simply by stubbing a toe and the engrossing stories that we are constantly creating about that world. It would appear to be nearly useless to ask which level of experience, the physical or the imaginative, is more real; or to look to one, at the exclusion of the other, for ethical insight.

In a sense, this brings us back to the values/language split with which this entry began. In calling for a clear-sighted view of every specific person with AIDS, Morrison aligns himself with the values-oriented camp. He wants not only creative writers but also commentators on literature to write justly. So does Sontag. But, as she demonstrates in her own fictional works, language is a powerful and playful human trait that tends to seek its own ends, regardless of its possible relationship to the real world of ethical problems. Language, in fact, creates new worlds all the time. Consider only Tony Kushner's Angels in America, so magnificent an achievement that it transcends the category of AIDS play. In short, the values/language dichotomy is more properly seen not as a true division but as a perpetual ethical tension.

joanne trautmann banks (1995)

revised by author

SEE ALSO: Bioethics; Ethics; Narrative


Banks, Joanne Trautmann. 1986. "A Controversy about Clinical Form." Literature and Medicine 5: 24–26.

Banks, Joanne Trautmann. 1990. "Literature as a Clinical Capacity: Commentary on 'the Quasimodo Complex.'" Journal of Clinical Ethics 1(3): 227–231.

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Barnard, David. 1992. "'A Case of Amyotrophic Lateral Sclerosis': A Reprise and a Reply." Literature and Medicine 11(1): 133–146.

Barnard, David. 2000. "Consider the Philosophers of the Field, How They Narrate; They Admit It Not, but Oh, Do They Spin." Medical Humanities Review 14(2): 83–88.

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Brody, Howard. 1987. Stories of Sickness. New Haven, CT: Yale University Press.

Brody, Howard. 1991. "Literature and Bioethics: Different Approaches." Literature and Medicine 10: 98–110.

Brody, Howard. 1992. The Healer's Power. New Haven, CT: Yale University Press.

Chambers, Tod. 1999. The Fiction of Bioethics: Cases as Literary Texts. New York: Routledge.

Charon, Rita, and Montello, Martha, eds. 2002. Stories Matter: The Role of Narrative in Medical Ethics. New York: Routledge.

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Coles, Robert. 1989. The Call of Stories: Teaching and the Moral Imagination. Boston: Houghton Mifflin.

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Graff, Gerald. 1979. Literature against Itself: Literary Ideas in Modern Society. Chicago: University of Chicago Press.

Grosz, Elizabeth. 1994. Volatile Bodies: Toward a Corporeal Feminism. Bloomington: University of Indiana Press.

Harpham, Geoffrey Galt. 1992. Getting It Right: Language, Literature, and Ethics. Chicago: University of Chicago Press.

Hauerwas, Stanley, and Burrell, David. 1989. "From System to Story: An Alternative Pattern for Rationality in Ethics." In Why Narrative? Readings in Narrative Theology, ed. Stanley Hauerwas and L. Gregory Jones. Grand Rapids, MI: William B. Eerdmans.

Hunter, Kathryn Montgomery. 1991. Doctors' Stories: The Narrative Structure of Medical Knowledge. Princeton, NJ: Princeton University Press.

Hunter, Kathryn Montgomery, ed. 1994. "Narrative and Medical Knowledge." Literature and Medicine 13(1).

Irving, John. 1985. The Cider House Rules: A Novel. New York: Morrow.

Jones, Anne Hudson. 1987. "Literary Value: The Lesson of Medical Ethics." Neohelicon 14: 383–392.

Kramer, Larry. 1985. The Normal Heart. New York: Samuel French.

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MacIntyre, Alasdair C. 1981. After Virtue: A Study in Moral Theory. Notre Dame, IN: Notre Dame University Press.

Martin, Wallace. 1986. Recent Theories of Narrative. Ithaca, NY: Cornell University Press.

Morris, David. 1991. The Culture of Pain. Berkeley: University of California Press.

Nelson, Emmanuel S., ed. 1992. AIDS: The Literary Response. New York: Twayne.

Nelson, Hilde Lindemann, ed. 1997. Stories and Their Limits: Narrative Approaches to Bioethics. New York: Routledge.

Newton, Adam Zachary. 1995. Narrative Ethics. Cambridge, MA: Harvard University Press.

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Poirier, Suzanne, and Ayres, Lioness. 2002. Stories of Family Caregiving: Reconsiderations of Theory, Literature, and Life. Indianapolis, IN: Center Nursing Publishing.

Rabkin, Eric. 1986. "A Case of Self Defense." Literature and Medicine 5: 43–53.

Reich, Warren Thomas. 1988. "Experiential Ethics as a Foundation for Dialogue between Health Communication and Health-Care Ethics." Journal of Applied Communication Research 16: 16–28.

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Smith, David H. 1986. "The Limits of Narrative." Literature and Medicine 5: 54–57.

Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus and Giroux.

Sontag, Susan. 1987. "The Way We Live Now." In The Best American Short Stories 1987. ed. Ann Beattie and Shannon Ravenel. Boston: Houghton Mifflin.

Sontag, Susan. 1989. AIDS and Its Metaphors. New York: Farrar, Straus and Giroux.

Thomson, Rosemarie Garland, ed. 1996. Freakery: Cultural Spectacles of the Extraordinary Body. New York: New York University Press.

Trautmann, Joanne, and Pollard, Carol. 1982. Literature and Medicine: An Annotated Bibliography, rev. edition. Pittsburgh, PA: University of Pittsburgh Press.

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Williams, William Carlos. 1961. "The Use of Force," In The Farmers' Daughters: The Collected Stories of William Carlos Williams. New York: New Directions Press.

Wyatt-Brown, Anne M., and Rossen, Janice, eds. 1993. Aging and Gender in Literature: Studies in Creativity. Charlottesville: University of Virginia Press.


Aull, Felice, et al. "The Literature, Arts, and Medicine Database." 2003. New York University School of Medicine. Available from <>.