PART ONE—
THE MEANING OF AIDS
1—
The Once and Future Epidemic
In And the Band Played On gay journalist Randy Shilts introduces one of the figures central to his history of the origins of the AIDS epidemic—Gaetan Dugas—at the 1980 San Francisco gay pride parade: Dugas's diagnosis of Kaposi's sarcoma just a few weeks before had not dampened his spirits since he expected the blemishes to disappear.[1] In the pages that follow, Shilts paints a picture of a self-absorbed profligate from whom AIDS radiated outward in an expanding circle, whose vainglorious sexuality enclosed others in the involuntary grip of AIDS. Mostly through And the Band Played On Dugas became known as "Patient Zero," the man whose erotic penchants and compulsions put him causally at ground zero of the American AIDS epidemic.[2] Shilts's portrait of Dugas recalls the literary visions of "anointers" who in earlier times "spread" bubonic plague,[3] and mass-media reports were quick to pick up the Dugas story in their headlines. Indeed, even the publisher's press release noted Dugas's story as one of the most salient features of the book.[4]
Others have also tried their hand at identifying the various forces that made the epidemic possible,[5] but And the Band Played On remains the most ambitious account thus far about the origins of the epidemic, about what persons and circumstances were responsible for the emergence of the unprecedented syndrome. And if there have been discussions about the origins of the epidemic, there have also been discussions about its future. In often dire and foreboding language many of these discussions conjure a future despoiled not only of health by the epidemic. Public
health analyst Ronald Bayer's Private Acts, Social Consequences: AIDS and the Politics of Public Health, for example, summons a future beset by trials of immense consequence and gravity in matters of civil rights should progress against the epidemic not keep pace with public expectation.[6] In law professor Monroe Price's Shattered Mirrors there is also augury of a future fatalistically vulnerable to moral desperation and political derangement.[7] Part of Price's haruspicy here is achieved through word choice. The following words, for example, occur on a single page of Shattered Mirrors chosen at random: enemy, virus, bacteria, parasites, vulnerable, puzzle, change, pessimism, AIDS, unrelenting, mocking, resistant, microbes, quarantine, illness, incubated, infectious, poor, disgrace, unchecked, infection, problem, doubtful, competition, survival.[8] The connotative force of page after page of dire language of this kind suggests a viral cataclysm whose outcome will determine the moral and medical perfectibility of man.[9]
The description of a figure who "spreads" AIDS is worth conjoining with considerations about the future of AIDS for what the conjunction reveals about the way responsibility is understood and assigned in the AIDS epidemic, about the way we think of the epidemic as a catastrophe, and about what remedies it requires. Its future turns out to be even more problematic than its present.
The "Spread" of AIDS
In describing the figure central to his account Shilts describes Dugas as "ideal for this community," the pretty-boy gay community, that is, by virtue of his sandy hair, inviting smile, trendy Paris and London clothes, and soft Quebec accent. By Shilts's account Dugas lived a life of parties, cocaine, Quaaludes, bars, baths, "poppers" (amyl nitrate), and travel. Once "the major sissy of his neighborhood in Quebec City," Dugas was an ugly duckling who became a swan, who could say with confidence: "I am the prettiest one."[10] But his dangerous sexual liaisons, not his looks, earned Dugas prominence in Shilts's account. Dugas kept, for example, an address book that amounted to an archeological record of his sexual history, with strata so old that he sometimes did not recall the fossilized names he unearthed there. He was unapologetic about his wide circle of lovers, an erotic life all the more attractive to him—according
to Shilts—as emotional compensation for an unhappy childhood. After years of taunting and torment by neighborhood bullies, he had carved "his own niche in the royalty of gay beauty, as a star of the homosexual jet set."[11] Dugas's mortal sin in Shilts's account was his unwillingness to abdicate his eminence in gay erotic hierarchy when doctors wondered whether his disease might be communicable. He not only ignored doctors' counsel to abstain from sex but after sex he even showed partners his lesions: "'Gay cancer,' he said, almost as if talking to himself. 'I've got gay cancer,' he'd say. 'I'm going to die and so are you.'"[12]
That he had been epidemiologically linked to 40 of the first 248 men identified with what was then called "Gay-Related Infectious Disease" (GRID) and that he ignored counsels to refrain from sexual relations made Dugas a prime target for explanations requiring a villain behind the epidemic. And acceptance of the characterization of Dugas as a villain has carried over even to accounts otherwise critical of Shilts's work. English professor James Miller, for example, observes, "I still shudder—whether with voyeuristic pleasure or zero-at-the-bone fright I can't tell—whenever I recall the lurid bathhouse scene where Patient Zero exchanges bodily fluids with a Castro Street clone and then cackles vampirically as he reveals his fulminant lesions: 'I've got gay cancer. . . . I'm going to die and so are you.'"[13] In describing Dugas's behavior in bathhouses, however, Shilts uses adverbs and adjectives sparingly. Only in describing Dugas's sexual willfulness does Shilts freely avail himself of a more expansive characterization, offering motives and attitudes.[14] Thus the spare description of the bathhouse scenes permits and elicits varying reactions. Though some readers have found Dugas a vengeful, viral sadist, it is not clear whether Dugas's remark that his partner is going to die means that Dugas has successfully caused disease in this partner or whether, in the fullness of sexual time, the partner cannot hope to avoid the disease because gay life is the way it is, because the partner already has the disease, or because the disease is unavoidable in any case.[15] Certainly, Shilts does not have Dugas cackling; on the contrary, he is talking almost to himself, whatever that might mean to a partner dressing hastily at his side, whatever that partner might have known—if anything—about gay cancer and its meaning for his own fate.
Despite the caution Shilts exhibits about directly attributing malevolent motives to Dugas in bathhouse scenes, he nevertheless stacks the narrative cards against Dugas from the beginning. There is little in Shilts's presentation that might exculpate Dugas or mitigate the view that Dugas, either in his person or in the ideals he epitomized, bore significant
responsibility for the epidemic. It even appears that Shilts has characterized Dugas as the Aristotelian efficient cause of the epidemic, insofar as he appears as its mechanism of transmission in this country, and gay ideals were the formal cause of the epidemic insofar as they shaped the culture in which transmission could occur easily. Shilts directs the reader's blame toward Dugas when he reports that one physician investigated legal measures to prevent Dugas from having sex and that strangers accosted Dugas on the street and told him to leave town. The narrative, moreover, cues the reader to identify with Dugas's "innocent" sexual partner. At one point, for example, Shilts describes Dugas's behavior in a bathhouse this way: "He would have sex with you, turn up the lights in the cubicle, and point out his Kaposi's sarcoma lesions."[16] By breaking the third-person narrative form here—the form typical of journalistic reporting—Shilts invites the reader to imagine being Dugas's victim. Such an invitation would be more readily accepted, of course, by readers prepared to imagine themselves open to gay sex and to bathhouses. Such an invitation may work in other readers to elicit a homophobic overlay to whatever other moral hostility they may feel about Dugas's behavior. The scenes even invite a conflation of homosexuality with promiscuity with callous, endangering behavior. This identification is amplified in its evocative force since Shilts never once cues the reader to empathize with whatever doubt and suffering Dugas must have endured during his sickness. Even Dugas's incredulity about the communicability of his condition—who had ever known cancer could be contagious?—is cast as denial; precious little sympathy is given to the skepticism Dugas might have had about the communicability of a hitherto unknown pathologic syndrome.[17] The social prestige and moral authority of medicine are powerful forces to be sure, but even so it would be hard to believe that medicine could produce new categories of disease. Shilts did not in fact interview Dugas (if such an interview was possible before Dugas's death), and there is no sympathetic word uttered by anyone on his behalf in the entire massive volume. In fact, Shilts does not offer Dugas as a portrait in biography so much as a one-dimensional scoundrel in a gothic novel, an occasion for lamentation about the evils of (gay) men.
Dugas's individual failings are not Shilts's only targets of criticism. Despite the claim that he is merely reporting, Shilts clearly fictionalizes Dugas's life as an emblem and symbol for gay life and especially for excesses imputed to it. If Dugas is blameworthy in the origins of the epidemic, by extension so too is the sexual ethos of gay life itself, because Shilts uses Dugas, and especially his willful sexuality, as a figure for all
gay men. Shilts says, for example, that Dugas had achieved what every man wanted from gay life. In his liberated life-style Dugas had freedom, travel, drugs, and plenty of sex. He was therefore the incarnation of gay male desire; only accidents of circumstance block other gay men from living like, desiring like, and being desired like Dugas. According to such a characterization, Dugas represented and gay culture pursued as its ideal that promiscuous, emotionally and materially unencumbered hedonism that opened the door to the epidemic. Fleshy immersion in sexuality was not merely accidental to Dugas's nature. Shilts says: "Sex wasn't just sex to Gaetan; sex was who Gaetan was—it was the basis of his identity."[18] To the extent then that Shilts uses Dugas as a figure for gay men—no other gay man in And the Band Played On is said to represent what every man wanted from gay life; not an activist, not a politician, not a journalist—the very defining properties of gay life provide the conditions of the epidemic's possibility. In an ideal gay world it would only be a matter of time before everyone slept with everyone—"so many men, so little time," lamented the motto of the age—with the result that there was nothing in gay sexual identity or its pursuits that would be a natural obstacle to or conscriptable ally against the epidemic.
According to this psychofictional characterization of gay life in And the Band Played On, gay males were not only vulnerable to the epidemic because of the ways in which they shared their bodies but also because they would be individually (like Dugas) and collectively (like bathhouse owners) compelled to resist measures to control the epidemic because of the way in which gay identity had been so narrowly defined and constructed. Control of the epidemic thus meant an undermining of gay identity by asking gay men to give up the sexual habits that had given them self-identification, self-affirmation, escape from oppressive personal histories, and the possibility of new forms of community.[19] By this logic any counsel or legal mandate to refrain from sex would have to be opposed by gay men as an assault on the foundations of individual and collective gay identity. It would follow that gay men would find counsel against gay sex, even if intended to protect their health, fulsomely resonant with echoes of moralistic and medical judgments that condemned gay sex as immoral, illegal, and even mentally disordered. So if the very nature of gay identity proved an obstacle to its own protection from the epidemic, then the conceptual foundations are laid for the protection of gay men from themselves by others, by public health authorities, for example, who would have to disregard gay protest. And indeed Shilts plots the bathhouse controversy in his analysis exactly along these lines.
Shilts concludes his "description" of Dugas, saying: "In any event, there's no doubt that Gaetan played a key role in spreading the new virus from one end of the United States to the other. The bathhouse controversy, peaking so dramatically in San Francisco on the morning of his death, was also linked to Gaetan's own exploits in those sex palaces and his recalcitrance in changing his ways."[20] Shilts sees Dugas here less as a person than as a kind of sexual constellation whose points of infection across the nation had been connected by the departure and arrival schedules of airline timetables. Certainly, Shilts sees Dugas as having achieved what every man desired from gay life, but at his death, Shilts says, "he had become what every man feared."[21] Dugas no longer belonged to gay culture in particular as its ideal but instead belonged to the world as a universal human threat, joining an elite rank of global terrors alongside nuclear destruction, biochemical warfare, and ecological calamity, every one of them linked with the specter of mass death.
Is Dugas what every man need fear? Even if one adopts a purely journalistic stance in regard to the life of Gaetan Dugas, there are other ways in which the story might have been told. Dugas was, after all, but a flight attendant without any particular history of moral strength; he lived unascetically in a culture that does not require sexual self-mortification. Claims about the transmissibility of cancer and of a new, previously unknown immune disorder would have been hard to believe even among those inclined to sexual asceticism. And even if Dugas had acknowledged his condition, in advance, to his sexual partners, it is unclear whether there would have been any more or any fewer cases of AIDS in the United States. Shilts offers no evidence that Dugas was specifically responsible for a diagnosis of AIDS in another person after being advised to refrain from sex. He does not cite a case of AIDS that would not have occurred otherwise except for the sinister bathhouse malevolence of that Canadian flight attendant betraying the obligatory altruism of his profession. In some respects too it was purely accidental that Gaetan Dugas became "Patient Zero." There were (and are) other gay men whose lives and exploits replicated his, whose address books held as many if not more names and telephone numbers, who were addicted in the etymological sense of the word (addicted meaning "assenting") to bathhouses, whose looks and sexuality were equally a career unto themselves. In many ways Dugas lived no differently from many of the continent-hopping, urban peers of his time. Why therefore should the hammer of judgment fall as heavily on Dugas as Shilts's narrative requires, especially since such a judgment replicates the homophobia that equates
homoeroticism with AIDS, especially since a large measure of Dugas's "fault" was not that he lived differently from others but merely that he—not they—got "it" first?
The claim that links Dugas to the emergence of AIDS in the United States is worth considering critically. Shilts reports that "at least 40 of the first 248 gay men diagnosed with GRID in the United States, as of April 12, 1982, either had sex with Gaetan Dugas or had sex with someone who did."[22] He further remarks that "a [Centers for Disease Control (CDC)] statistician calculated the odds on whether it could be coincidental that 40 of the first 248 gay men to get GRID might all have had sex either with the same man or with men sexually linked to him. The statistician figured that the chance did not approach zero—it was zero."[23] We do not know how the statistician made his or her calculations, but at one point a mean incubation period for the disease—the time between infection and emergence of symptoms—is stipulated as 10.5 months.[24] Such an assumption might support the claim that Dugas's role in infection in others could not be coincidental, but the measurement of latency in this way is meaningless since Shilts himself reports that infections could in fact date to 1976 (four years prior to Dugas's diagnosis), in which case the attributions of AIDS to sex with Dugas cannot be proved. A long latency period would in fact increase the likelihood of coincidence and diminish the certainty of causal connection. Certainly, the case for Dugas's causal role in the epidemic is far less convincing than Shilts represents it.
Dugas was certainly not exemplary in his behavior, but it is hard to say that his weaknesses were especially glaring given the times, given the nature and nurture of homoerotic desire in the United States. And whatever moral weaknesses he may have had were certainly amplified by the contrivances of contemporary culture. Easy airline flights across oceans and continents, for example, have had as much to do with the communicability of AIDS as much as any other epidemiological vector, including erotic ones. Perhaps the interesting question to ask about Dugas is not how one man continued to engage in risky behavior even after learning of his dangerous, communicable condition but why this story made its way into media reports and histories of the epidemic rather than reports on the deaths of gay men and analyses of the oppressive conditions of culture that contributed in a prejudicial way to the forms of gay identity in the United States which made gay men susceptible to infection. Why is it so easy to believe that the villainy of a few persons (or a class of persons) caused an epidemic through their deliberate be-
havior? Why is it that social contributions to the epidemic (in the form of increasing opportunities for sexual interaction) and medical contributions (in the form of increased control of other sexually communicable diseases) are ignored as relevant in assessing the "causes" of the epidemic? Focusing on Gaetan Dugas and his "personal" responsibility serves only to mystify the many forces that are the context, the unacknowledged preconditions, and sometimes the unknowable impetus of all human choices. Moreover, the synecdochic use of Dugas for gay men in general clearly risks making an anti-AIDS campaign into an antigay campaign.
There are, of course, people diagnosed with HIV infection or AIDS who do share beds and needles with unwarned others. But to focus on specific persons—individually or as a group—as responsible for the epidemic structures the analysis so as to avoid identifying other important preconditions of HIV infection. While condemnation of people who "spread AIDS," for example, is common, discussion about people who "contract" HIV by reason of failure to protect themselves is infinitely less common. Certain social responses show that even among people with HIV, blame is assigned in morally revealing ways. The ovations confirming Earvin "Magic" Johnson's standing as a national hero following the announcement of his HIV infection, for example, suggest that if there is villainy to be assigned in the epidemic, it does not very often go to the people who are "innocently" on the receiving end of an infection. The very terminology of "spreading" AIDS—terminology that is ubiquitously, unconsciously prevalent—suggests the premeditated, active transmission of disease to passive, innocent victims. The asymmetry revealed in the prevalence of language about "spreading" HIV and the comparative dearth of language about "contracting" the infection suggests that a cultural assumption is at work which believes that but for a malevolent few individuals—like Dugas—there would be no further "spread" of HIV. Such a presumption, however, is not only untrue to the facts of human nature, because it fails to acknowledge the way in which all persons are susceptible to some degree of erotic risks of infection, but also works as an obstacle for HIV education by imposing the responsibility for "containment" of the epidemic on a few persons whose duty it is to remain isolated in their viral quarantine. This kind of moral expectation—that people with HIV bear the burden of protecting all others—strategically relieves all others of duties in their own behalf, and the world is thus made safe once again for the noninfected and made safe in a way that requires no effort from the uninfected other than their contribution to the conceptual design of a moral quarantine.
We might also ask why Gaetan Dugas is represented as a greater social evil than, say, educational failures that even today leave teenagers confused about and unskilled in effective ways of protecting themselves against HIV infection. Some people (including prostitutes) with HIV infection have in fact been jailed here and there around the country when they have been found to have had sexual relations with others, and bathhouses have been closed in some cities. But what is the import of these events? That "johns" and bathhouse patrons have a right to sex without risks of HIV? That the duty of the public is to be outraged at sex and needle use among people with HIV? That public authority should be omnipresent to guarantee that all sex and needle use is without risk of HIV infection?
Narratives about individuals who "spread" AIDS offer easily identifiable culprits on whom to pin the blame for the epidemic and its continuing calamities. Shilts does make clear in his narrative that there is plenty of blame to go around for the epidemic—and he certainly does not spare some gay activists in this regard—but his depiction of Dugas's involvement with its beginnings is too facile. Shilts does not show, for example, the way in which human lives are socially intertwined and the extent to which human "choices" or identities are artifacts of culture. He does not read Dugas against the background of human fallibility, that fallibility that has sunk the best of both persons and nations, their best intentions notwithstanding. He does not read the sexual "fast lane" against the difficult emergence of gay culture in Western history.[25] Instead, the life of Gaetan Dugas is "reported" as a kind of sexual vortex whirling in a moral solipsism indifferent to the health and lives of others. Dugas hovers as a menacing, inverted incubus over the sleepy, dreamy sex play of gay men. To the extent that such a picture emerges and to the extent that Dugas serves as a figure for all gay men in this narrative, responsibility for the epidemic not unsurprisingly falls to individuals rather than to culture at large. Such a depiction also suggests that the reform or control of certain persons and places would restore what is otherwise a planet and a civilization in preordained moral and immunological equilibrium.
AIDS and the Body Politic
The conceptualization of the origins of the epidemic is instructive in the way in which blame is fixed and the catastrophe understood. If AIDS is
thought to follow the collapse of will—in either individuals or in the class of gay men and drug-users as a whole—such a view invites speculation about the necessity of controls that would restrict the range of sexual and civic choices traditionally respected in moral and political philosophy. Monroe Price's Shattered Mirrors , for example, fleshes out this kind of speculation, foretelling what the epidemic might mean for the future understanding of citizenship, rights, and freedom. Put at risk by AIDS, he says, are the equation between autonomy and sexual expression; the accustomed, limited role of government authority in shaping public thinking and morality; the fragile standing of minorities in American society; and the circumspect and rational use of government power. Given such a view, the continued elusiveness of either cure or vaccine may yet further wither faith in the state and its ideals; in desperation, public opinion may swing in favor of more drastic measures of control.[26] Price's book is full of proleptic prophecy that fear of the epidemic, limited success in containing the "spread" of AIDS, the traditional wide berth given to government action justified in the name of public well-being, and a brooding public opinion all threaten to provoke an assault on civil liberties as well as reconfigure an understanding of the meaning of American civic traditions.
Ronald Bayer has also advanced the view that AIDS may prove a pivot on which the nation could turn against its commitment to reason and civic traditions: Will reason, balance, and a search for modest but effective intervention, he wonders, fall victim to a rancorous din?[27] Thus we can understand the gloss he puts on a California referendum that would have put restrictions on the employment of people with HIV infections. Although the bill was in fact defeated, Bayer says, the referendum "revealed how popular discontent might be exploited in the years ahead as the absolute numbers of AIDS cases mounted. It had also demonstrated the existence of a popular base that could be mobilized for a repressive turn in public policy."[28] The conclusion of Bayer's Private Acts, Social Consequences also raises the question of whether the American public will at some time demand tougher, less voluntary measures against AIDS; it also points out the ease with which a voluntarist strategy for prevention of infection might be subverted.[29]
In one sense these kinds of analyses are merely tautologies that AIDS cannot but change the future. Time and again they fall back on the language of "may," "could," "can," and "might" and thus trade in the realm of logical possibilities. Fear of the endangerment of the nation "by" AIDS can, as Price says, muffle concern about constitutional
formalities and the protection of rights, but such a claim would be true about any durable and deep fear held in the nation, whether about AIDS or oil supplies.[30] It is always true that society might suffer mood swings in which it is prepared to jettison its carefully crafted legal precedents, its civic traditions, and the roles it expects of government, and this is no less true in and because of the AIDS epidemic. Yet society might respond otherwise to AIDS. Society might come to accept the burdens of AIDS as part of the human condition and not see the disease as requiring a special moral interpretation or the imposition of coercive measures. The epidemic might elicit untapped reserves of social altruism rather than transmogrify society into a punitive if "enlightened" garrison. Gay philosopher Richard D. Mohr has suggested that "ideas, thoughts, reason, and argument will have no significant role to play either in the formation of public policy or in changing individual behavior in the AIDS crisis."[31] His view of the future suggests that profoundly antigay values and structures in society will work to confound an honest confrontation of the epidemic. In this foretelling, a future beset by AIDS becomes not an aberration of contemporary society but its logical conclusion. At their worst, analyses, which raise dark visions of the future but do not equivalently argue against the evils of such a future, risk being self-fulfilling prophecies by reason of the very fears they create and popularize.
Looming behind many analyses of the influence of AIDS on the future is the sense that the real damages of the epidemic have yet to transpire. These analyses are often cast in terms of protecting the future from the present epidemic, as if the evils of the epidemic belonged most significantly, perhaps even exclusively, to the future. For example, one of the most alarmist analyses of AIDS is to be found in Gene Antonio's The AIDS Cover-Up?[32] which was published during a 1986 peak in national AIDS anxiety. Antonio argued that AIDS is more dangerous than plague or a major war because of the silent way in which it "spreads." In what he called "optimistic" projections, based on his own calculations, Antonio estimated that by the end of 1990 there would be sixty-four million infected Americans in addition to mass death, mass sickness, and a crushed and wasted health system.[33] Along the same lines, Finnish philosophers Heta Häyry and Matti Häyry called for action against AIDS in the name of the millions of people in the future who may fall victim to it. To make their point, they aver that "nuclear holocaust, the main source of fear among people today, will tomorrow look like the only peaceful way out of our misery if governments do not care to stop the
triumphant march of AIDS now ."[34] What dangers AIDS must pose if nuclear holocaust could in any way ever be a consolation! But if the dangers of the epidemic do belong primarily to the future, is not the political and moral effect to dismiss the urgency of AIDS? Rhetoric of this kind and pitch—ranged alongside the hyperbole typical in political analyses competing with all other world events for attention—could suggest that AIDS is not yet sufficiently important to require systematic concern, that it has not yet killed enough persons to justify trimming the budgets of other, important government expenses. Viewing the epidemic as a future harm not only provokes exaggerated depictions of its gravity but it also and ironically drains off energy and resources by situating the epidemic in some remote period distant from the interests and concerns of present life. Certainly, depicting nuclear holocaust as a "solution" preferable to a future with AIDS risks writing AIDS into the order of fate as a cataclysm against which no human effort could prevail regardless of how much money government set aside for AIDS-prevention programs. Situating the epidemic primarily in the future permits both an exaggeration and trivialization of the epidemic and in either case risks muting the current significance of AIDS.
Conjoined with a view of the future despoiled by the misuse of civil liberties meant for pursuits far nobler than bathhouse sex and drug use, it is little surprising that there would be analyses like those of Price and Bayer regarding the possibility of extensive civic revisionism which would brusquely assert public control over individual choice. Price observes that "law becomes a gracious song that can be sung when it is possible to sing but abandoned when it is not."[35] If people with HIV continue to threaten society with their disease, the subtext of this message reads, society must revert to an atavistic standard somehow morally superior to the excesses of contemporary civic traditions that are special and apparently temporary dispensations from a more compelling moral authority whose name is the public health or common weal. A concomitant consequence of depictions of "future AIDS" is that the moral and social intensity they would ostensibly marshall may be defused by the oracular futurity of their messages.
A "Scientific" Future
Discussions about the future of AIDS do not belong, of course, only to historians and political moralists. They are also to be found in science and
the media. Reports from the 1992 international AIDS conference, held in Amsterdam,[36] raised the future of AIDS in ways that not only replayed earlier forms of AIDS discussion but that also situated the import of the epidemic in the future.
Researchers at that conference held out little hope for an immediate cure or a vaccine,[37] and they forecast a disheartening AIDS toll. Since many predictions were prepared for the year 2000 the feared future of AIDS draws nearer all the time. An article in U.S. News & World Report , for example, said: "Researchers at the Harvard AIDS Institute expect that by the year 2000, the number of Thais afflicted with HIV will balloon to 2 to 4 million out of a current population of 58 million, largely through heterosexual intercourse."[38] The same piece said of AIDS in India: "Despite official statistics that calculate just 125 victims, an uncounted 6,000 people are now believed to be dying of AIDS in the country, with another 500,000 to 1 million people infected with HIV."[39] Worldwide estimates for the year 2000 were put at between 30 and 110 million people with HIV infection by 2000. By now, of course, ever-worsening prognostications are standard features of narratives about AIDS in almost all disciplines. The costs of treating people with AIDS also form part of the archetype of AIDS forecasting.[40] The future of the world's economy is often called into question as well: "The pernicious plague, now spreading misery around the world at an alarming rate, may also plunder the global economy over the next decade."[41] Litanies about the evils of AIDS offered by political commentators, religious leaders, and writers to Dear Abby invariably include AIDS among the woes of our age which imperil the future.
Beyond these fairly typical features of AIDS discussions, reports from the Amsterdam conference also raised the specter of a third virus responsible for patients with apparent AIDS who failed to demonstrate evidence of HIV infection. Several AIDS researchers reported the existence of such patients,[42] and one researcher said that he had even isolated a new virus from the patients.[43] Other researchers withheld comment about their findings pending the publication of reports in scientific journals.[44] The possibility of a novel pathogen fueled even further speculation about the future of worldwide AIDS. First, such reports called into question the state of biomedical knowledge about the pathogenesis of AIDS; they raised questions about the aggressiveness of the CDC in monitoring information and trends in this epidemic and about the worth of embargoes against release of research data to the media prior to publication in biomedical journals. Mostly, though, these
reports questioned whether current measures taken to protect blood products can be effective against an unidentified pathogen. Even the earliest reports about a possible third pathogen responsible for AIDS took pains to stave off panic about an "uncontrolled" epidemic. Several researchers pointed out, for example, that the new cases of "AIDS" may prove to be other forms of unrecognized immune disorders, the product of an increased vigilance for such disorders. Others pointed out that blood banks should be protected by virtue of the steps they already take to avoid pathogen-bearing blood. A New York Times lead editorial cautioned against panic at the identification of a new "AIDS virus." The thirty-some cases of idiopathic AIDS, the Times concluded, are not yet a threat and may never be: "The strange new AIDS-like cases may yet turn out to be more a scientific curiosity than a public health hazard."[45]
Contradictory reports about the contagiousness of AIDS viruses, however many of them there may be, also appeared in 1992. Newsweek , for example, said: "If there is a new AIDS virus, it doesn't appear any more contagious than HIV. Some of the stricken patients may deny having HIV risk factors, but there's no evidence that they have contracted, or transmitted, their illness through casual contact."[46] A report of HIV in Thailand, however, suggested that there were HIV "subtypes" that differed not only in "virulence" but also in contagiousness.[47]
The combined effect of all these reports is striking inasmuch as they underscore the role of authority and science in predicting AIDS ills and deepening the mystery over the disease without being able to offer any substantive biomedical control over the current and future epidemic. Against a predicted, global catastrophe of proportions not yet imaginable, the reports of novel occurrences of AIDS outside the reigning explanatory paradigm threaten a revolution against the confident authority of AIDS expertise. It is as if medicine owes as much to Cassandra as to Asklepios. Hence the rush to calm the public is accompanied by reports of a new virus that might elude the barriers ensuring the safety of blood used in transfusions and other medical applications. Uncertainty invites speculation, and where there is speculation people will see in the future what salvific qualities they think necessary for the redemption of the present as well as what catastrophes they think inevitable from current, objectionable practices. Certainly it is true that there have been many false leads regarding the pathogenesis of AIDS, and there are many reasons not to rush to judgment about the significance of cases of idiopathic AIDS and about questions of subtype virulence and transmissibility. Nonetheless, that the future remains the pervasive worry
about AIDS suggests the many ways in which AIDS is not felt in the present, the many ways in which the epidemic is undervalued as the evil that it is at present. It is certainly telling that in all the major media reports about a possible new pathogen, no one thought to mention the significance of that conjecture for people who suffered from that kind of disorder. Amid all the speculations about future victims of this virus, there was no mention of those who might already be affected.[48] Medicine and moral civilization apparently have no interest in such PWAs or their loss is already without significance. They are already apparently beyond the pale in a sense consonant with the origins of that phrase: pale, from the Latin word for stake and thus fence, in a phrase originally referring to the limits of the English empire in Ireland; a boundary beyond which civilization has no interest.
Conceptualizing the relationship between AIDS and the future is a problematic task. Certainly there is much to be done to protect future generations from the ravages of the epidemic. Yet invocation of the future may in fact serve other strategies that work against such protection, strategies that distance the epidemic from its immediacy, strategies whose hyperbole corrodes commitment to or even belief in the possibility of overcoming the epidemic, and strategies that in sum write off the present as beyond redemption. Such strategies may also "read" the epidemic into nature, suggesting that it is the order of nature, not the social order, that stretches the epidemic over the globe and concluding that human efforts of resistance are as of little use as trying to halt continental drift. We must even consider motives for the protection of the future: Is "public health" merely the continuation of politics by other means? Does "the future" have the same kind of coded meaning as "family values" and imply specific moral arrangements of human relations and only those?
The future, of course, has not been imagined only as an immunological dystopia in the style of, for example, German novelist Peter Zingler's Die Seuche (The Plague), in which a future society is highly polarized by HIV and Germany's extremist "solutions" to the epidemic.[49] On the contrary, there have been works of imagination which have tried to foresee a future protected from AIDS without at the same time invoking specters of mass death, of foretelling a world laid waste by bodily fluids. Often focusing on the political activism of people with AIDS, gay men, and their allies,[50] these works try to imagine a future without AIDS which links past and future in community with the present. One such act of imagination may be found in the final moments of the
1990 movie Longtime Companion , by Craig Lucas and Norman René. In that scene two lovers, Willy and Fuzzy, walk the beach with Fuzzy's sister and discuss demonstrations, arrests, their losses, and their conceits. "I just wanna be there if they ever do find a cure," Willy tells his companions. "Can you imagine what it would be like?" Fuzzy wonders. A pregnant moment later a swarm of the "dead" rushes over the hill toward the trio, full of sound, color, and life. James Miller has observed that in such an ending "all losses are restored and sorrows end in an extemporaneous party scene that recaptures the joie de vivre of the Fire Island revelers at the beginning of the film, minus, of course, the poppers and booze and virus."[51] As an act of imagination and as one of the very few, sustained cinematic features about AIDS, Longtime Companion could not be expected to fulfill all hopes, and the movie faced criticism not only for its rich, white character demographics but also for the escapism of its all-too-utopian ending.[52] Longtime Companion does not offer a future ravaged medically and politically by AIDS. Neither, though, does it offer merely an escapist, apolitical revery, merely an AZT-laced opiate for the masses. The future envisioned by these longtime companions is no religiously earned "compensation" for present trials and sufferings, no delayed gratification deserved through virtuous living. Instead, the ending of Longtime Companion enacts a momentary dissolution of time and thereby robs it of any capacity to frame invidious conflicts between the past, present, and future. Judgments about the origin of AIDS disappear as insignificant because some future cure has for a moment reached into the past. The protection of the future cannot serve as a pretext for any political cause since there is no other moment but this one. Questions about blame for the past and responsibility for the future also collapse in this scene because—except that these terms are no longer meaningful—the "living" embrace the "dead" in a temporally indivisible community.
An observation by the seventeenth-century French philosopher Blaise Pascal may have an uncanny relevance to this postmodern epidemic. In the Pensées Pascal commented on the human condition: "We almost never think of the present, and if we do think of it, it is only to see what light it throws on our plans for the future. The present is never our end. The past and present are our means, the future alone our end." In our studied avoidance of the present, Pascal observed, we (whom he called "thinking reeds") fill our lives with vanities and diversions: "Thus we never actually live, but hope to live."[53] Controlling our penchant to see our lives through lenses of the past and future can itself determine
whether we live or only and merely hope to live in and with the epidemic. There are many ways in which to tell the story of the origin of AIDS, and there are many ways to imagine its future. But there is certainly a lethal combination in the view that people with HIV are themselves alone morally responsible for the "spread" of the epidemic and in the view that the "real" dangers of the epidemic have yet to transpire. Against such narratives, we would be wise to underscore human fallibility in determining responsibility for the emergence of this divisive epidemic. It would certainly be unwise and unfair to hold out a future so damaged by AIDS as to indulge rightist fantasies of stern "anti-AIDS" measures or to characterize the evils of the epidemic as not yet having "really" happened. Shilt's depiction of Gaetan Dugas may satisfy the anthropomorphizing desire for an explanation of evil, and the lure of "get tough" politics may satisfy the hunger for assurance that "something" will be done to protect the immunological and economic purity of the future, but narratives emphasizing "individual responsibility" and "future damage" prevent seeing the many complex social forces that to this day conspire to permit further HIV infection as well as ways in which the epidemic has yet—future damage apart—to be appreciated as the damage it already, irrevocably is. In this epidemic imagined another way, time does not have to be viewed as either the engine of willful conspiracy or the horizon of inevitable tragedy. In an epidemic thus understood as something other than an antagonism between the past and the future, hope may proceed in the name of a people undivided by time.
2—
The Search for a Cure
The search for a cure for AIDS has raised important ethical questions about access to drugs and experimentation with new medication. Some PWA organizations, for example, demand full access to all drugs that show any therapeutic benefit; others have even rejected the distinction between experiment and therapy altogether.[1] One of the founding motives of ACT UP, according to its founder, gay writer Larry Kramer, was to get drugs into the bodies of PWAs.[2] While treatment by orthodox medicine has vastly improved since the beginning of the epidemic, in 1994 biomedicine still cannot offer predictable control over AIDS, much less any therapy that amounts to a decisive cure. Given the desperation of PWAs for a cure, it is not surprising that quackery has found a thriving business. PWAs have sought relief in diverse and unlikely nutritional regimens, exercise programs, blood-heating techniques, faith healing, and assorted psychodynamic approaches. They have sought cures wherever there is hope for sale. By contrast, some policy analysts have called for more stringent control over access to drugs and more reliance on the "gold standard" of double-blind trials, which include control groups receiving no drug, only a placebo, as a means of demonstrating the actual efficacy of drugs under experimental review.[3] Critics of an open-access drug policy decry as futile any pharmaceutical research and treatment carried out on an ad hoc basis, and they insist on the importance of painstaking standards of biomedical research as the only pathway toward progress, even if that progress amounts merely to consumer protection
from useless and dangerous "remedies," even if that progress cannot promise to secure the life of anyone now living with AIDS.
Narratives by and about PWAs are less sanguine about the process and progress of orthodox medicine. In these accounts the search for a treatment is always obstinate, often quixotic, sometimes dangerous, and ultimately futile, as the narratives to be discussed here make abundantly clear. Conflict between PWAs (trying to keep themselves individually healthy) and bench scientists (trying to identify treatments effective on randomly selected groups) is likely to continue as long as no wholly efficacious treatments for HIV-related conditions emerge. But besides the troubling ethical concern about access to experimental therapies and the design of clinical trials, there is another important ethical concern: the effect of the search for a cure for AIDS on PWAs and on gay PWAs in particular. Thus far the search for an AIDS cure has not only proved an ambiguous benefit to PWAs, it has sometimes even brought cognizable harm. I do not wish say that both orthodox and alternative medicine have not brought relief and solace to many PWAs, for they undeniably have, but the relentless search for treatment and a cure does sometimes open PWAs to new vistas of suffering and hopelessness they would not otherwise know. Hope may also be an iatrogenic suffering.
Borrowing Time
On the very first page of his 1988 Borrowed Time Paul Monette says, "I take my drug from Tijuana twice a day."[4] This unspecified drug came from Mexico because, no doubt, it had not been approved for use in the United States or was substantially cheaper there. Either way, this admission is an affront to medical and pharmaceutical practices in this country which force PWAs to rely on the sometimes illegal drugs of a developing nation in order to secure their health. The depiction of medicine in the rest of Monette's memoir of a lover and friends looking for a cure only deepens that challenge. Consciously and unconsciously, the memoir documents how the search for an AIDS cure opens PWAs and their lovers and advocates to unreasoning hope and subjects them to the depredations of institutional medicine and what homophobia abides there.
While Monette and his lover, Roger Horwitz, do encounter some caring and compassionate individuals in their search for treatment, Monette more typically represents the institutions and practitioners of medicine as consistently failing them across the range of their needs as gay men worried about, sick with, and dying with AIDS. Inasmuch as the memoir amounts to a virtual catalog of the damages of medicine, those few patches of text offered on behalf of the humanity and accomplishment of medicine are rare oases indeed. More often, Monette scores traditional medicine, especially the operations of its experimental arm. At the beginning of Roger's illness, for example, medical uncertainty about the nature and significance of AIDS permitted patients some hope that would eventually prove ill founded. While talk about the fatality of AIDS was in the air, its symptoms were so unclear that gay men did not understand what medical problems qualified for diagnosis as AIDS proper. Monette cannot understand, for example, how his friend Cesar Albini's swollen, unhealing leg is related to the rare pneumonia and cancer that were the conditions first gropingly identified as AIDS.[5] Similarly, Roger's minor cough and a not-very-serious swelling in Paul's neck lead them worriedly to physicians, who told them that their symptoms did not match the criteria set forth for AIDS, that they did not even qualify for something called at the time pre-AIDS. Such epistemological uncertainty about the nature of the syndrome on the one hand functioned to make gay men worry unrelievedly about whether they had the fatal illness while on the other hand offered them false hope when practitioners could not identify their illnesses as AIDS-related. While it would be unfair to blame medicine for its uncertainty about a newly emerging viral syndrome, the effect of that uncertainty was to create informational and educational vacuums in the public at large and to permit diagnostic imprecision in the clinic as well as false hopes in its clients. Uncertainty about the nature of AIDS and the uncertain distinction between pre-AIDS and AIDS itself comes to a farcical collapse in Borrowed Time when one of Monette's friends dies with doctors all around insisting that while they did not know exactly what it was that killed him, it certainly was not AIDS.[6] How many more, Monette wonders, died but never made the lists?[7] In an even more ironic twist, one of the very physicians whose reports signaled the formal 1981 beginning of the U.S. epidemic wrongly told Monette his symptoms would probably prove to be nothing.[8]
The HIV-related sickness and death of Cesar Albini and Roger Horwitz are shadowed with iatrogenic suffering. Roger undergoes many of
the predictable blood tests, X-rays, CAT scans, invasive and disabling bronchoscopies, and takes home the grocery bags of drugs that are the medical fate of PWAs, all of which inflict burdens of one kind or another on him; at one point both Roger and Paul are misdiagnosed with amoebiasis. Monette criticizes the depersonalization that occurs in hospital settings: the stripping away of personal identity, the reduction of the individual to a medical problem. Many of the health-care difficulties experienced by Monette and Roger are not, of course, limited to PWAs. Physicians elsewhere make mistakes, misdiagnose patients, and cannot promise to cure all human ills. Not only can physicians not treat all conditions, they often fail to approach individual patients in sympathetic ways. New interns do all appear improbably young and interchangeable, and they often relate to patients only through newly learned questions that crudely impose a biomedical framework on the unscientifically ordered lives of their patients; encounters between sick men and women who construct stories of their sickness in relation to their personal biographies often clash in narrative entanglements with physicians who try to see diseases and disorders apart from those personal histories. Many people cannot afford the luxuries of private medical care and must seek recourse in the limited health-care services available at publicly supported hospitals.
But AIDS produces its own unique circumstances in this account too. After Roger is hospitalized, he undergoes a bronchoscopy, in which a tube is inserted through the throat into the lungs in order to retrieve a tissue sample for study. The experience is exceptionally painful but necessary in order to confirm certain diagnoses; the discomfort of this sadistic parody of fellatio[9] leaves Roger mute and racked with pain. Shortly after his first hospitalization, a physician appears in Roger's room and announces that tests do confirm Pneumocystis pneumonia, but he says no more. As Monette says, "The intern had never once said the word."[10]Pneumocystis served as a cultural code for AIDS, a code that permitted discussion of AIDS without the need for direct use of the term, a code that reflected the need even in medicine to discuss AIDS in an indirect fashion because of its unsavory social connections with gay sex, drug use, and immorality. Uncertainty about the nature of AIDS had previously permitted Roger and Paul to hope Roger was not affected, his symptoms notwithstanding. The intern's silence about AIDS might be motivated by sympathy, a wish to spare Roger the burden of a diagnosis that was as much a scandal as a threat to his life. But from Roger and Monette's perspective, the physician's diagnostic evasion was merely
paralepsis, confirming AIDS while pretending not to mention it. Such a reined-in diagnosis offered no important benefit to them. The doctor's reluctance to use the word AIDS recapitulated social inattention to AIDS and foretold a doomed outcome. The diagnosis in any case plunged Roger and Paul into the larger uncertainty of coping with an entirely untreatable condition.
The diagnosis does launch Paul and Roger on a crusade for a cure. They are favored by their economic standing and intellectual acumen, and they know as much. They know other gay men with AIDS who do not have access to any experimental drug protocols, including one man who waited hours to see a doctor in a public hospital all the while knowing that the doctors had no clue about how to help him.[11] But the lovers' privileges do not come without a price, especially as all these experimental efforts not only do not save Roger's life but also endanger him and tether him inextricably to physicians and hospitals. Throughout the memoir Monette chronicles the reticulated network of the AIDS underground, an informal cluster of friends and activists who keep watch for the newest drugs, especially antivirals, those that would attack the infection itself. As Monette put it: "The struggle for the drug gave us a great surge of purpose that colored everything. Any news about any drug could cut through my blackest despair."[12] Attention to this grapevine earned Roger placement in two drug trials. The first, for suramin, started in a Zurichlike clinic, all quiet and fastidiously clean. For the promise of the drug trial and the presence of a gay doctor in this sheltering clinic, Monette was grateful, but the gratitude was tempered by the secrecy he and Roger felt necessary about the diagnosis. Roger once even moved to another room in order to prevent contact with a patient who knew him. While the trial went forward in these favored circumstances, however, Monette worried all the while that if this drug failed, there would be no magic bullet.[13]
The drug did fail both Roger and others around the country: "As for the suramin—water under the bridge which seemed more lethal with every report that came in. . . . I felt ridiculous and ashamed. I who had pushed suramin all summer as practically a miracle drug." But Monette decides his own connivance in getting Roger into this trial is forgivable since he was gullible while "others knew exactly what they were doing" in offering so toxic a drug.[14] Monette censures the way in which other test sites continued their suramin studies even after it was clear that the drug was too toxic: "There was even one doctor who kept his patients on suramin through the winter, even when we knew how lethal the side
effects were, and even as the patients died off one by one."[15] In the end, even as the clinical drug trial offered the only hope then available in the armamentarium of orthodox medicine, such experimentation simultaneously underscored the vulnerability of PWAs and their lovers and advocates. Most important, it didn't help; it almost killed Roger.
But on the grapevine there was already word of another drug, something known as AL-721. A personal connection at UCLA—favoritism, really—got Roger into a study of that new drug, which proved to be AZT, and Monette turns to this trial with hope, undaunted by the first near-disaster: "The thrill of the undercover operation kept us going, and this at a time when AZT had the status of a Holy Grail in the AIDS underground."[16] Roger was apparently the first person west of the Mississippi to be treated with the drug; Monette calls him the AZT poster child. And like suramin before it, the drug held out hope where elsewhere there was none. For a time the drug appears to work; at least Roger's clinical condition improves. Soon an AZT culture starts to flourish everywhere, with the beepers of friends and strangers going off at four-hour intervals to remind people to take their medication. But the promise of the drug is not fulfilled, and Roger succumbs to various complaints: shingles, anxiety attacks, aphasia, dementia, and the increasing blindness that precedes his decline to death. But even that blindness was fought with an experimental surgery.[17]
Monette and Horwitz's search for treatments and a cure, problematic in any case by reason of the mysterious nature of AIDS, was complicated by their sexual identities too. Dated from the appearance of those Morbidity and Mortality Weekly Reports pointing out the unusual occurrence of Pneumocystis pneumonia and Kaposi's sarcoma in 1981, the AIDS epidemic formally began less than eight years after the contested decision by the American Psychiatric Association (APA) to remove homosexuality per se from its categories of mental disorders. Many gay men who came of age in the fifties, sixties, and the early seventies would not even have viewed that decision as their "liberation" (though some did) so much as a confirmation that sexual reorientation therapy was their own Tuskegee syphilis experiment, as evidence that medicine did not value them in their lives and loves and understood their worth only in relation to the outcome of medical experiments carried out on them, sometimes involuntarily. The search for a medical cure for homosexuality had led to some grotesque efforts in chemical and electrical aversive therapy, drug treatment, testicular transplants, and even brain surgery.[18] And the practice of conversion therapy has not disappeared even today.[19]
It is not surprising that when medical authorities announced the emergence of a new, pernicious syndrome attacking gay men, many would have received the news suspiciously, even skeptically. Was this new syndrome the next phase of medical homophobia? In the history of APA classification homosexuality was first claimed to be a sociopathic personality disorder, then a sexual disorder, then an ego-dystonia, and finally—as the vestigial form of this pathological classification—sexual-orientation distress. Was AIDS a continuation of the perceived biomedical agenda to link homoeroticism with pathology? And even if gay people did not have a specific skepticism about AIDS per se as a continuation of a pathologizing homophobia, still after sometimes hard rites of passage to adulthood they would nevertheless have difficulties returning to the care of social institutions knowing as they did that schools, churches, government, and even doctors often failed to acknowledge, protect, and nurture them.
While Monette does not report a physician or nurse refusing to treat a PWA because he or she was gay, we nonetheless recognize in Borrowed Time an expectation of homophobia from medical institutions and health-care workers. Monette mentions that in the past a gay man with any disease even faintly venereal would seek out a physician who was also "on the bus." In other words, he would seek out a gay physician in order to avoid embarrassment or in hope of some understanding, even what Monette punningly calls "fellow feeling."[20] Such an observation suggests the way in which gay men often do not believe that heterosexual physicians understand them or are prepared to tolerate the diseases that attend their sexual lives. Though medical professions may no longer profess the pathology of homoeroticism, many gay men still do not believe that they will be accepted in the kind of unconditional doctor-patient relationship afforded straight people. It was, after all, only in mid-1993—almost twenty-five years after the beginnings of gay liberation at Stonewall and twelve years after the announcement of the existence of AIDS—that the American Medical Association (AMA) voted to declare discrimination on the basis of sexual orientation unacceptable within that professional organization.[21] Even then, the policy statement met opposition. The entrenched homophobia of medicine is underlined in Monette's narrative by an anecdote about a physician who rolled his eyes in a way to make plain that Roger's father must have done something very wrong to have had not one but two gay sons, and with two different wives no less.[22] In such an adversarial context the question
"Are you a homosexual?"—even if asked by a conscientious doctor looking for a means of HIV infection—triggers every protective instinct in a gay man against a homophobic environment and can have the effect of alarming gay PWAs rather than convincing them that the question is posed in their best medical interest.
An openly gay doctor does appear at the UCLA medical center where Roger is being treated. Peter Wolf is one of the few health-care workers in this account who offers the two refuge from the fear of medical homophobia. In a number of instances the best care given to Roger comes from persons capable of imagining themselves or their relatives as PWAs, a perspective easy enough for someone gay or friendly with gay men. Of Peter Wolf Monette relates: "Explaining that he had been treating AIDS patients since his first day as a doctor, he spoke simply and feelingly of looking down at a stricken man in bed and thinking: 'This is me.'"[23] Later on, a nurse with a gay son exhibited a committed interest in the well-being of her PWAs "so maybe if someone ever has to take care of him, they'll treat him like a son."[24] There is also a kindly gay phlebotomist singled out by Monette for praise. By contrast, when Monette poured out his worries about Roger's diagnosis to his own straight physician and asked what to do, that doctor "shrugged his shoulders with a cavalier unconcern I can only attribute to his certainty that he was safe himself. I've seen that straight man's shrug a hundred times. 'Burn the sheets,'" he replied . . . and then added, "You live alone, you die alone."[25] Monette does not say that no straight doctor offered support and consideration—in this regard Monette has nothing but highest praise for Dennis Cope ("And not once in twenty months did he not have time"[26] )—but by and large the institutions and practitioners of medicine in his account distanced themselves from PWAs. Medicine stands apart from PWAs in the way it functionally forces the burdens of learning about AIDS diagnoses and treatments onto PWAs themselves. It stands apart in the labored efforts of dentists to appear—against all evidence—comfortable in the infection-control procedures of mask, gloves, and warily executed contact. It stands apart in the promotion of therapeutic strategies that permit hope of the most dubious kind. In the expectation that increased visibility of gay health-care workers would lift some of this burden, the very first item of the "Founding Statement of People with AIDS/ARC" recommends that health professionals "who are gay come out, especially to their patients who have AIDS."[27] Their presence is expected to mitigate—as it does in fact in Monette's mem-
oir—the homophobic context of medicine by diminishing the way in which the conventions of the closet compromise the care of gay people with AIDS.
Eventually, since this is a memoir and not a biography in progress, Roger's decline accelerates, with fevers and sweats, coughing, the collapse of injectable veins, a catheter implant for drug injection, the infection of the catheter, disorientation, and increasing need for nursing care and AIDS buddies. Nevertheless, Monette continued to believe in the miracle of AZT. It fell to Dr. Cope, Roger's doctor, to point out to Monette the significance of Roger's fourth bout with Pneumocystis pneumonia: "It wouldn't be the worst thing if this were the one that took him."[28] In his last conscious moments, Roger "speaks" to Paul one last time by fluttering his eyelids. Knowing that it is finally over, Paul goes home. Awakened later by the phone, he and Roger's mother listen to a nurse's voice speak through the electric gauze of the answering machine: Roger has died. The days of his experiments are over even as Paul's had scarcely begun.
The representations of medicine in Borrowed Time are, to be sure, colored by personal grief and anger, and medicine may be wrongly blamed for the evils that belong to human frailty more than personal iniquity, but these characterizations are instructive nevertheless about the meaning of the quest for a cure. Even when fully committed and engaged, biomedical institutions on the cutting edge of research prove themselves helpless before AIDS. Even though gay men are occasionally present as health-care workers, their tokenism does not wholly offset the homophobia gay men fear from the medical establishment. Despite all the efforts expended on Roger's behalf and all the lessons that might have been learned about his own illness, Monette does not expect that he himself will fare any better than Roger in finding help. Thus the opening line of the memoir ("I do not know if I will live to finish this") may be understood not only as a reflection on Monette's own mortality but also as a reflection on the state of medicine. Despite the structured efforts on the part of biomedical scientists to find a cure, there may never be a "magic bullet," even though the very pursuit of that objective fosters expectations of deliverance. Monette's memoir shows how medical promise can prove a receding, beckoning horizon that stays slightly beyond the hope it engenders in PWAs.
This treacherous kind of hope is somewhat tempered by an ambiguous effect of the search for a cure: the emergence of an AIDS under-
ground. As Monette says of the band of gay men and PWAs looking for a cure:
This network has the feel of an underground railway. It could be argued that we're out there mainly for ourselves, of course, and the ones we cannot live without. But on the way we have also become traders and explorers, passing the word till hope is kindled in places so dark you can't see your hand in front of your eyes. If the government was going to act as if we didn't exist, if the medical establishment was prone to gridlock over funds, if the drug companies were waiting till the curve got high enough for profit, then we would find our own way.[29]
The AIDS underground functioned in part as a social form binding gay men together in ways that would not otherwise be possible in the shadow of homophobic medicine (and that would indeed not be required absent the epidemic). The search for a cure made some gay men more expert about AIDS early in the epidemic than most doctors, even in the most prestigious medical schools in the nation. Participation in a drug trial represented a willfulness to live that rang particularly strong in a culture whose medicine had declared "homosexuals" mentally ill and whose morality viewed homosexuality as ending in lonely, self-inflicted death. Anger at government and society at large and the search for an AIDS treatment at least had the effect of uniting PWAs in ways that served their own purposes. Monette's novel Afterlife, which followed Borrowed Time, continues this theme in showing how gay men and gay PWAs keep vigil over one another in homophobic society.[30]
In an implacable quest for an AIDS treatment, however, clinical drug trials and unorthodox treatments alike become overlaid with expectations that they could not possibly hope to meet. More important, their purposes may not be the purposes of individual PWAs. For example, even while suramin and AZT failed Roger, these failures are biomedical "successes" in the sense that they at least identify the limitations of those drugs as treatments. Even though they prove failures in saving individual lives, these kinds of "successes" can be as important to biomedical knowledge as clinical successes. Individuals may look to the advances of biomedical research for their individual salvation, but biomedical research need not save any given individual in order to advance itself. The AZT trial appears to have extended Roger's life for a time, and the search for a cure generated a camaraderie among the HIV infected that would not otherwise have been possible. There are reasons enough to acknowledge the worth of these advantages, but in the context of a
health-care system that can be inimical to all patients and especially gay PWAs, even these advantages are not without their costs. How many times, after all, is a PWA supposed to want to survive the emergency hospitalizations, the intubations for mechanical ventilation, and the medications and sedation that are the treatment of Pneumocystis pneumonia? While biomedicine may benefit from putting PWAs through all these seemingly endless treatments in the sense that the pool of knowledge is thereby increased, still it is important not to mistake the needs of experimental research and the education of physicians for the needs of each individual PWA.
Medicine from the Garden Shed
David Wojnarowicz's "Living Close to the Knives" describes how his friend Peter Hujar, close to death and sicker all the time, explored various AIDS treatments. This memoir differs from Monette's in that its subject does not seek a cure in the halls of prestigious health centers. On the contrary, Peter gropes his way through unorthodox treatments. He had seen one researcher, for example, who had been working with "nontoxic antiviral drugs he'd developed." The researcher's investigations had elicited some sort of trouble with the federal government, but legal action failed to impugn the integrity or character of this particular researcher. In fact, action by a government discredited by its failure to appreciate the nature and magnitude of the epidemic actually enhanced his reputation: "The fact that the government entered the scene was one of the things that convinced Peter that the doctor might be a genius."[31] Part of the attraction here was the bold idea that the doctor had developed: injecting his patients with a "vaccine" made from human excrement.[32] Not even the fecal origin of this vaccine detracted from the doctor's credibility with his clients: "I figured that because shit was one of the most dangerous corporeal substances in terms of passing disease . . . maybe this guy figured out something in the properties of shit to develop a vaccine. After all, the bite of a rattlesnake is treated with a vaccine made of venom."[33] The doctor did fall from grace, however, when it was learned that only one person's excrement was the source of everyone's vaccine, that he covered up adverse reactions, and that he lied about how well others were doing ("fine, fine") when they were in fact sometimes dead and buried.
Wojnarowicz went next to a doctor on Long Island who was administering typhoid shots to PWAs on a theory that the injection somehow bolstered the immune system. Peter's raw emotions and disorientation beset the trip out to the doctor, but the encounter with the doctor proves more disconcerting still. The waiting room is full of familiar faces from the AIDS underground, fellow travelers recognizing one another from other waiting rooms, with a grapevine all their own. As in Monette's account, these cure seekers have assumed responsibility for their own treatment. One so-called "Dorian Gray," for example, both diagnoses and prescribes for himself, saying he won't need AL-721 because he only has AIDS-Related Complex, not AIDS.[34] In an ironic reversal of orthodox researchers' worries that their experiments will be disrupted by patients' taking unapproved drugs, other PWAs in the waiting room advise Peter to conceal his own use of AZT because this researcher wants to keep his unproven therapy uncontaminated by the confounding use of one of the drugs then formally licensed for the treatment of HIV infection![35]
The Long Island researcher opens up whole new possibilities of hope when he finally meets with Peter.[36] Ostensibly raising the question in the name of diagnostic certitude, the doctor asks Peter how he knows he has AIDS, adding, "After all, you may not have it." This question calls into doubt Peter's entire medical history and recasts his future. His "AIDS" might conceivably be cured by proving it never existed in the first place. The actual injection that Peter receives that day is an anticlimax to this more engaging possibility of deliverance. The narrator and another friend, however, are skeptical. Under their questioning, the "doctor" turns out to be "a research scientist with degrees in immunology" who offers them only a vague account of his theory connecting typhus injections with the thymus gland. They come away with their confidence in his medical knowledge significantly undercut. Neither the injection nor the prospect of correcting a misdiagnosis, however, proves of benefit; Peter dies later in the confines of an orthodox hospital, in keeping with his original orthodox diagnosis and prognosis.
Alternative medical treatment proves attractive for a number of reasons in this account.[37] Not only has Peter exhausted the routines and treatments available to him from orthodox medicine, but Wojnarowicz feels that orthodox medicine also stands as a figure for and is of a piece with the larger and morally corrupt society it serves. Wojnarowicz accuses the government of inaction and willful malfeasance toward PWAs. He notes, for example, how medicine's cultural distance from the sick
and its general antipathy for gay men have forced PWAs to become not only their own researchers but also their own research subjects:
The government is not only witholding money, but drugs and information. People with AIDS across the country are turning themselves into human test tubes. Some of them are compiling so much information that they can call government agencies and pass themselves off as research scientists and suddenly have access to all the information that's been withheld and then they turn their tenement kitchens into laboratories, mixing up chemicals and passing them out freely to friends and strangers to help prolong lives. People are subjecting themselves to odd and sometimes dangerous alternative therapies—injections of viruses and consumption of certain chemicals used for gardening—all in order to live.[38]
While Wojnarowicz applauds the heroism in the efforts of PWAs to take matters into their own hands, he clearly does not find the cookery of alternative medicine any great consolation, given the brutal risks it entails and the larger social failing it represents. Wojnarowicz sees the therapeutic need created by AIDS as ultimately the responsibility of government and federal health agencies. Their failure to respond has turned PWAs by default into hobby researchers and kitchen chemists because they have no alternative.
Wojnarowicz connects Peter's death—and all deaths with AIDS—to the larger social hatred of gay men, to a homophobia and violence so pervasive that it both produces and sustains the ills of the epidemic. Given the willingness of people to blame PWAs for their illness and even a readiness to round them up in camps or to tattoo them, Wojnarowicz explains: "What's going on here but public and social murder on a daily basis and it's happening in our midst and not very many people seem to say or do anything about it."[39] The matter of rage at society is intimately connected with the search for an AIDS cure. In "X Rays from Hell," a tale that begins in a late afternoon conversation about the worth of living when, AZT notwithstanding, a friend's T-cells have plummeted to thirty, Wojnarowicz expresses this anger: "My rage is really about the fact that WHEN I WAS TOLD THAT I'D CONTRACTED THIS VIRUS IT DIDN'T TAKE ME LONG TO REALIZE THAT I'D CONTRACTED A DISEASED SOCIETY AS WELL."[40] He rejects the punishment theory of disease: that people die with AIDS because they have transgressed some moral norm or because they have internalized society's hatred of homosexuals.[41] He says, "I simply can't accept mystical answers or excuses for why so many people are dying from this disease—really it's on the shoulders of a bunch of bigoted creeps who at this point in time
are in the position[s] of power that determine where and when and for whom government funds are spent for research and medical care."[42] AIDS here stands not only for the sickness set in motion by an HIV infection but as an indictment of pervasive and corrupt moral attitudes. A "cure" for AIDS therefore requires a much more broadly construed rescue than experimental pharmacology can by itself offer. Wojnarowicz observes:
Outside my windows there are thousands of people without homes who are trying to deal with having AIDS. If I think my life at times has a nightmarish quality about it because of the society in which I live and that society's almost total inability to deal with this disease with anything other than a conservative agenda, think for a moment what it would be like to be facing winter winds and shit menus at the limited shelters, and rampant TB, and the rapes, muggings, stabbings in those shelters, and the overwhelmed clinics and sometimes indifferent clinic doctors, and the fact that drug trials are not open to people of color or the poor unless they have a private physician who can monitor the experimental drugs they would need to take, and they don't have those kinds of doctors in clinics because doctors in clinics are constantly rotated and intravenous drug users have to be clean of drugs for seven years before they'll be considered for experimental drug trials, and yet there are nine-month waiting periods just to get assigned to a treatment program. So picture yourself with a couple of the three hundred and fifty opportunistic infections and unable to respond physiologically to the few drugs released by the foot-dragging deal-making FDA and having to maintain a junk habit; or even having to try and kick that habit without any clinical help while keeping yourself alive seven years to get a drug that you need immediately—thank you Ed Koch; thank you Stephen Joseph; thank you Frank Young; thank you AMA.[43]
Given Wojnarowicz's concern for the socially and medically disenfranchised, we are not surprised that he expresses so much interest in unorthodox medicine, even measuring its worth by the extent to which medical and governmental health agencies oppose it. At least unorthodox medicine will not be automatically tainted by complicity with these larger social failings.
As in other writing by gay men about the epidemic, Wojnarowicz's solution to the epidemic is intimately connected with greater access to drugs, government initiative in the development of treatment, and larger social reforms that work primarily to end homophobia but also to help the homeless, the poor, and the junkie PWAs. From this perspective a cure for AIDS cannot be limited to a pharmaceutical magic bullet that has as its only effect the control of HIV, for the oppressions of AIDS are more than the sum of their pathogenic parts. Even more than Monette, Wojnarowicz expresses a seething anger at the profound indifference of
American society to the lives of gay men and other disenfranchised minorities.
Orthodox medicine faces an important challenge in recognizing and responding to the meanings of AIDS in the lives of those whose economic and social situations do not permit them the luxury of monitoring the national AIDS grapevine for new drugs or checking themselves into comfortable hospitals for extended periods of experimental therapy. Even if medicine is on the road to the discovery of a cure for AIDS, the PWAs who inhabit Wojnarowicz's pages do not stand to benefit from it. Orthodox medicine not only fails to deliver what health-care services are available to all, it also fails to enroll PWAs in experimental anti-HIV drug trials. Drug-users and women, for example, generally face considerable obstacles in enrolling in drug trials.[44] Orthodox drug trials thereby become one of the problems facing socially disadvantaged PWAs of whatever sexual orientation. The "gold standard" of long-term, multisite, placebo-controlled testing, all carried out with the profit motive in mind, can prove no friend to the homeless PWA. By contrast, unorthodox treatments seem a kind of pharmaceutical lightning, which if it hits, may do so powerfully and memorably, but even Wojnarowicz's sympathetic account depicts the humiliating limits of alternative methods. Injections of shit into the bodies of PWAs serve as their own reductio ad absurdum.
Compassionate Access
Set in Paris, Hervé Guibert's To the Friend Who Did Not Save My Life is a thinly disguised account of Michel Foucault's death with AIDS and the author's own struggles with his HIV infection.[45] Professor of French literature Emily Apter rightly calls the work a mixed narrative form, neither fiction nor pure autobiography.[46] Foucault's longtime companion labeled the work a vicious fantasy, though it is clearly biographical in parts.[47] Sorting out what is and is not fictive in this account is not as important here as considering the encounters with medicine that dominate To the Friend . The portrait of medicine that emerges is anything but flattering. In fact, the narrative is a relentless account of the missteps, limitations, and duplicity of medicine. The account opens with a declaration that despite three months of despair, the narrator will prove one
of the first survivors of AIDS. The author explains how his hopes are buoyed and sustained not by AZT or an underground treatment but by an "AIDS vaccine" coming from orthodox origins in American vaccine research. Yet in spite of the hope this vaccine inspires, To The Friend is largely an account of the way in which medicine fails people with AIDS.
Bill, an American manager of a large pharmaceutical lab that manufactures vaccines, is the first to tell the narrator (who stands for Guibert) in 1981 of a disease in the United States that is killing gay men. When the narrator passes this information along, his famous intellectual neighbor and friend, Muzil (who stands for Foucault), responds with incredulous laughter: "A cancer that would hit only homosexuals, no, that's too good to be true, I could just die laughing."[48] Ironically, Muzil will be among the first in France to die with the disease and among the most famous worldwide. His death in this narrative is made more ironic by his one-time encounter with a physician who hoped to establish dying centers where people could go and die quickly and painlessly, avoiding the long, revolting death agonies of hospices. Muzil had laughed this suggestion off too, though a version of this disappearing way of dying would prove attractive to him in his final days:
That nursing home of his, it shouldn't be a place where people go to die. Everything there should be luxurious, with fancy paintings and soothing music, but it would all be just camouflage for the real mystery, because there'd be a little door hidden away in a corner of the clinic, perhaps behind one of those dreamily exotic pictures, and to the torpid melody of a hypodermic nirvana, you'd secretly slip behind the painting, and presto, you'd vanish, quite dead in the eyes of the world, since no one would see you reappear on the other side of the wall, in the alley, with no baggage, no name, no nothing, forced to invent a new identity for yourself.[49]
This portrait of a vanishing, of a pretend death—taking the form, as the gravity of his illness became more apparent, of a wish to disappear in world travel—proves an ironic foil to Muzil's own all-too-corporeal death in the very hospital whose care of prostitutes and the insane Foucault had studied. There is precious little here to humanize Muzil's illness and death, and toward the end even such innocent trifles as pudding and copies of his new books were banished from his hospital room. The laughter that was Muzil's reaction to the first report of AIDS is transformed into a hacking cough that ends finally in his inability to speak. Before he died he knew full well how completely the body loses its identity once it is delivered into medical hands, "becoming just a
package of helpless flesh, trundled around here and there, hardly even a number on a slip of paper, a name put through the administrative mill, drained of all individuality and dignity."[50]
There is some question in Foucault's own case of whether he knew or admitted to himself that he had been diagnosed with AIDS. Muzil's own expectations regarding diagnostic disclosure would permit him and others to avoid any unwanted information. In this regard Guibert reports Muzil as saying: "The doctor doesn't tell the patient the truth straight out, but he gives him the means and the opportunity, by talking in a roundabout way, to figure it out for himself, which also allows him to remain blessedly ignorant, if that's what he really wants."[51] The narrator does confront Muzil with the diagnosis of AIDS: "Actually, you hope you have AIDS." But Muzil "shot me a black look, one that brooked no appeal."[52] Even if Foucault knew that he had AIDS, there is still uncertainty about what he took it to mean. This uncertainty would at least have had the effect of staving off the doom associated by the media with the diagnosis in 1983 and 1984; there is even one point at which Muzil receives an astonishing declaration from a physician that he is in perfect health.[53] Not even this distancing of himself from AIDS, though, saves Muzil, who eventually dies under the reductive gaze and authority of medicine, all his expressed hopes for a death unattended by medicine thwarted, his death shadowed not only by the irony of his own earlier dismissal of a disease that stalks gay men but also by intimations that he knowingly participated in sex that might have infected others.[54]
The portrait of medicine that emerges in the course of the narrator's discovery of his own HIV infection paints medicine in castigating terms. Throughout this account there are all the predictable humiliations of patients, practically conventions of medicine, that are common in stories of sickness. Patients are kept waiting for unaccountable periods, they are left unattended during embarrassing and painful procedures and in unfriendly environments, and in one instance the narrator observes how his blood vials have been accidentally mixed up with those of another patient.[55] For his first blood tests, moreover, the narrator visited a clinic in an otherwise deserted and shuttered hospital on the verge of complete closure, the perfect cinematic symbol for medical desolation. Elsewhere in the account, physicians are rebuked for improprieties. One doctor insisted on an HIV test the narrator did not want.[56] Another put the narrator at risk of liver cancer through mismanagement of hepatitis.[57] Another gossiped indiscreetly about his patients.[58] A homeopath diagnosed the narrator's throat abscess as "spasmophilia," a semivoluntary
condition caused by a lack of calcium, something requiring the "treatment" of mineral water and lemon.[59] That same doctor treated female patients by "shutting them up nude inside metal chests after affixing needles all over their bodies, needles filled with concentrates made from herbs, tomatoes, bauxite, pineapples, cinnamon, patchouli, turnips, clay, and carrots . . ."[60] Yet another doctor diagnosed Guibert as suffering from "dysmorphophobia," a hatred of all forms of deformity.[61] A psychiatrist challenges a patient to admit that his AIDS is the culmination of his own longing for death.[62] So harsh and humiliating are Guibert's encounters with medicine here and in his subsequent book that Emily Apter has called his work a "tragicomic version of La Ronde, in which doctors, visited in rapid succession and submitted to without a word, are substituted for the tricks of old."[63]
While the narrator's emotions are infused with hope for treatment of his HIV infection, his search for a vaccine parallels the kind of willful submission to mortification which is typical of masochism. The term vaccine is used by Guibert, as it has been used by Jonas Salk and others, to describe a treatment used on persons already infected with HIV which introduces some altered and nonpathogenic form of HIV in order to evoke an immune response capable of acting against pathogenic HIV. Such a treatment could then be administered prophylactically to others not yet infected. Bill, an American pharmaceutical executive, describes the possibility of a trial of such a vaccine in France and it becomes the narrator's sustaining hope. At the very same time Dr. Chandi invites the narrator to participate in a double-blind, placebo-controlled drug trial. This kind of trial meets the scientific community's requirement of ruling out the psychologically powerful placebo effect (in which the mere expectation of benefit from a drug produces the benefit sought). The pretense of placebos is found repugnant by the narrator ("abominable, real torture for all the patients involved"[64] ) and all the more so when he discovers that Dr. Chandi had lied to him. Dr. Chandi admitted that "he was already convinced at that time that the real medication was as useless as the dummy." It was only at the insistence of the pharmaceutical company that physicians continued to seek subjects for the study.[65]
After his formal diagnosis of HIV and his refusal to participate in Dr. Chandi's drug study, the narrator's T-cell count starts to fall, and it appears that his only option is AZT. But even if the AZT is successful in sustaining his life, it will entail lifelong dependency and pose such side effects as nausea, vomiting, headache, skin rash, stomachache, muscular pain, insomnia, intense fatigue, diarrhea, dizziness, and taste disorders.
Against this background the narrator listens in awe to Bill's description of the vaccine. But the hope held out by the vaccine—months away at best—is still no reason for unalloyed optimism. As Guibert puts it: "Now I was entering a new phase, a limbo of hope and uncertainty, that was perhaps more terrible to live through than the one before."[66] The personal treachery that follows justifies this description. Bill had promised to find a way to put the narrator (and companions Jules and Berthe) in the French trial, making sure they did not get placed in the placebo arm. Bill even went so far as to say that he would take the group to the United States and have the vaccine's creator vaccinate them if necessary.[67] Bill proves, however, unfaithful and unreliable, and all his many promises do not lead to the vaccine. He does, however, find a way to put another friend in the trial. This outcome should not have been too surprising; the narrator himself notes how hard it had been to secure a ride home with Bill. The very scarcity of the vaccine trial slots opened the narrator and his companions to manipulation. The "science" of biomedical research proves itself again susceptible to human vice, in this case favoritism, a bias that may not work against the results necessary for science but that surely works against the interests of the narrator, who looks to biomedicine for his very survival. This favoritism even deranges what camaraderie is possible between gay men in the epidemic.
As in Monette's writing, Guibert's narrative pitches PWAs into a maelstrom of conflicting opinion even as they are forced to acquire what expertise is possible on AIDS. Guibert's narrator finds himself trapped, for example, between conflicting opinions on how much AZT to take, opinions from two equally credible physicians offering equally credible rationales for their dosage recommendations.[68] The scene is a medical reenactment of the paradox of Buridan's ass: situated equally distant from two identical and equally attainable bales of hay, unable to identify any advantage in one over the other and therefore unable to choose between them, the ass starves to death. In such circumstances when all medication options appear equally limited, the prospect of an AIDS vaccine did offset psychologically the symptoms Guibert was enduring, fatigue and thrush among them. But the lure of a vaccine also and more importantly offered shelter from the responsibility for decisions about medication and offered the appearance of medicine more attentive to human needs and less wracked by the vagaries of conflicting scientific opinion.
There are instances in Guibert's narrative in which he pursues medical and emotional certainty another way. After examination by one partic-
ularly unorthodox doctor, the narrator says, "I'll kiss the hand of the person who'll tell me I'm doomed."[69] Or again, he says, "I felt better the moment I learned I had AIDS."[70] "If Bill were to file an appeal against my death sentence with his vaccine, he'd plunge me back into my former state of ignorance. [The diagnosis of] AIDS has enabled me to make a huge breakthrough in my life."[71] Even as he anticipates the possibility of the vaccine, his commitment wanes: "But [Bill] was tired, and so was I, and it was as though neither of us believed anymore in the possibility of this vaccine and its power to bring my disease under control, as though, in the end, languidly, we no longer gave a damn, just didn't give a fucking damn."[72] Or again, the narrator imagines Bill stealing the vaccine and crashing with it into the Atlantic.[73] Whatever else these declarations might reveal about the psychology of the narrator, they show how the anticipation of death can offer a repose incompatible with the demonic stalking of the ever-new offerings of medicine. Guibert's narrative demonstrates how the pursuit of a cure requires that hope submit—as a condition of its very possibility—to endless medical scrutiny and experimentation, the brusqueness of physicians, and the venality of pharmaceutical executives.
Although the book opens on a note of optimism and commitment to being among the first survivors of AIDS, the narrator's final medical decision is to discontinue AZT. He ends his book saying: "I'm in deep shit. Just how deep do you want me to sink? Fuck you, Bill! My muscles have melted away. At last my arms and legs are once again as slender as they were when I was a child."[74] The failures of medicine in this account are often personal ones, belonging to specific physicians, nurses, and Bill especially. But the narrator's indictment—"In Bill's eyes, I'm already dead"[75] —encompasses the practitioners, the institutions, and the principles of medicine alike, if not for their outright abandonment of PWAs then at least for the way medicine can—in the guise of helping them—actually flog people with HIV toward their deaths.
The Cost of a Cure
Placebo means in Latin "I will please." Clinical drug and surgical trials attempt to isolate and extinguish any outcome that depends on the placebo effect, the improvement based on the expectation of benefit by
the experimental subject. But as the chronicles discussed above indicate, many more "pleasures" are extinguished in medicine besides those that confound experimentation. In their chronicles of the search for an AIDS treatment Monette, Wojnarowicz, and Guibert try to reintroduce important pleasures of PWAs back into medicine. Their search for an AIDS cure almost starts from the assumption that medicine is no antagonist to their pleasures, especially the pleasure of individual recovery from AIDS. Their own accounts, however, do not always support the uncritical fervency with which they pursue a cure for AIDS.
These authors do not confine their expectations of medicine to their own isolated hopes of healing. In their narratives the hope for an effective AIDS treatment is virtually indistinguishable from expectations about biomedical reform generally, and if their narratives are read as indictments they fault not only individual practitioners for harsh treatment but also the institutional values of medicine as prejudicial to gay men and those in need of experimental medicine. Nevertheless, Monette, Wojnarowicz, and Guibert all seem to believe that the march of biomedicine cannot but produce a cure, and this view is shared by others in AIDS activism as well. The operational assumption of Larry Kramer, for example, is that a cure for AIDS exists and that it is merely necessary to find it; in his analysis finding a cure means getting past the homophobia, bureaucratic intransigence, and political incompetence that keep medicine from doing its job.[76] Cinema historian and AIDS activist Vito Russo also proclaimed that one day the AIDS crisis will be over.[77] But perhaps unwittingly and contrary to their intentions Monette, Wojnarowicz, and Guibert make it clear that advances toward a cure are paid for in the currency of the suffering of people with AIDS. More often than not, a diagnosis of AIDS sets in motion a litany of examinations, tests, hospitalizations, and desperate fumblings in the realm of alternative medicine.
I do not wish to say that PWAs or any other group of persons suffering from illness ought not to pursue treatment and cures even if it falls to them to become experts about their conditions and prove the moral conscience for medicine. But I do wonder whether advocates of an unyielding belief in a cure for AIDS and a demand for that cure don't underappreciate the damaging effects of medical care and research. It is worth asking whether the search for a cure is modeling itself on a relentless consumerism, with the pursuit of experimental drugs taking its place alongside the Jaguar, the hillside home with pool, the imported goods, and the other amenities of upscale urban living as the symbols of
a fulfilling life. We may also ask in light of the narratives considered above to what extent the despair of PWAs can actually be an artifact of misplaced faith in the very capacities of biomedicine. Activist demands for an AIDS treatment come at a time when other social and legal forces are converging to secure ways of protecting patients from unwanted, ineffective, and sometimes brutalizing medical treatment. The federal Patient Self-Determination Act, for example, was prompted in part by the desire to protect patients from the damages of unrestrained medical treatment,[78] and the death-delivering "Mercitron" of Jack Kevorkian and the thanatological recipes of Derek Humphrey's Final Exit have adherents of their own among the sick and dying.[79]
In 1993 the Ninth International AIDS Conference in Berlin ended in pessimism about the prospect for early development of a prophylactic HIV vaccine, and its reports cast a long shadow over the efficacy of AZT, the most widely used drug for treatment of people with HIV-related disease. Conference presenters and reports associated this pessimism with the slow nature of science rather than with the nature of HIV.[80] One may read this kind of pessimism in the same way that the 1993 National Research Council Report on AIDS[81] can be read: as the predictable reeling in of a decade of outlandish discourse on the future of AIDS. After all, immunological prosperity was said to be around the corner more than once. One need only recall Secretary of Health and Human Services Margaret Heckler's overweening declaration in 1984 that a vaccine for what was then called HTLV-III was only two years away.[82] Or one might read the somber, circumspect reports from the Berlin conference as evidence of waning social and medical commitment to the cause of discovering a cure. Either way, the conference functioned as a biomedical echo of these turn-of-the-decade narratives by Monette, Wojnarowicz, and Guibert about the results of a committed search for an AIDS treatment: all heroic efforts notwithstanding, there is no curative treatment for the pathogenesis of HIV infection, and none is on the horizon.
The enormity of the task of finding a cure for AIDS permits raising the question of moral responsibility in that task. Certainly people with severe illnesses want to discover a treatment that will restore them to health, and certainly society should invest in therapies and research. But it is hard to see that a morally defensible argument could maintain that PWAs and others with incurable conditions are individually duty-bound to discover a cure. It is also hard to see that any PWA has the duty to be the first person whose AIDS is cured. AIDS activism committed to
the demand for an immediate cure sets the threshold for "responsible" living with AIDS higher than would seem to be justified in terms of a person's moral duties. If, as Larry Kramer says, a cure for AIDS exists and merely needs to be discovered, it is easy to see PWAs and society at large as amiss if they do not pursue that cure with every effort that can be mustered. But such a judgment is unreasonable given the distance that appears to separate PWAs from a cure. If, moreover, one assumes that governmentally coordinated medicine may identify a cure for AIDS, one may wonder by extension whether similar efforts could not also identify cures for many other conditions. To the extent human disorders are the result of identifiable biological processes open to human intervention and control, in theory a cure would exist for all such human suffering. If so, there are more failures than successes in medicine, and to the extent these failures belong to human action and indecision the government not only has blood on its hands but buckets and buckets of it.
A cure for AIDS is important, yes, but it does not follow that each and every PWA must commit to the pursuit of that cure as if it were the only morally permissible objective for him or her. Since the task of finding a cure appears more and not less daunting with every passing international AIDS conference, it is well to keep in mind the dangers of overcommitment to a goal whose pursuit appears to be largely a matter of supererogation, of individual willingness to tolerate the limitations and disappointments of medicine. There is every reason to pursue treatment and a cure, but not a cure that imperils the other values important to PWAs. Recognition of the dangers posed by medicine to PWAs is not incompatible with views advocating stronger social investment in efforts to care for PWAs in all their needs. In extending the dominion of medicine over the cruelties of nature, the search for a cure affirms the worth of PWAs and the importance of human knowledge. But the pursuit of an AIDS cure, if it is swollen beyond reason, may prove as defeating as utter resignation to the inevitability of death with AIDS. In a review of Hervé Guibert's To the Friend Who Did Not Save My Life, gay novelist and essayist Andrew Holleran observed: "As the deaths increase in number, and the dead become more various, the recriminations are going to mount. In the broadest sense, everyone who survives did not save the lives of those who didn't."[83] A cure for AIDS, envisioned as involving the rehabilitation of medical research, the eradication of homophobia, and the humanization of medical practice, is certainly attractive in its revolutionary ambitions. At the same time, though, Holleran's remark can be interpreted to suggest that uncritical insistence on a cure risks
expanding the breadth of human moral depravity to the point where mere survival amounts to complicity in others' deaths with AIDS. Surely the search for treatment and a cure should not have to incriminate every innocent of every human life and stoke every rage against dying when death can sometimes offer the sick more consolations than medicine.
3—
Testimony
The writing about the experience of sickness and death in the AIDS epidemic, much of it by and about gay men, comes on the heels of the rise of noteworthy gay literature in the United States. Richard Hall has drawn attention to some of the ways that literature has changed considerably since World War II. What was once a literature of secrecy, guilt, and apology has become a literature of defiance and celebration of sexual difference, a literature offering characters who are gay without complaint: "No more slashed wrists and leaps into the sea."[1] Such characters are no longer typically enmeshed in psychiatric and moral quagmires by reason of their homoerotic lives; they have escaped definition by social stigmas, and they resist the distortion of their private truths by public mythology.
Gay and lesbian literature now charts the familiar problems of looking for love, finding a family, determining the worth of career and power in the order of things.[2] In moving to concerns about relationships and families, gay literature has had to move beyond coming-out stories in order to address the trials of ordinary human life, love gone wrong, and the aging and death of parents. And such a literature has also had to countenance the HIV / AIDS epidemic and grapple not only with unexpected illness and death but also with its moral and cultural meanings.
This writing has taken various forms in fiction, poetry, biography, autobiography, and even obituaries. Obituaries are now as much a
standard feature of the pages of the Windy City Times , the Advocate , and the New York Native as their inevitable phone-sex ads. In obituary form or otherwise, much of this writing has taken as its task the blessing of the dead. Of course, not only gay men have written about their experiences and losses in the epidemic. Other people close to the devastations of AIDS and its antecedents in HIV infection have also set down their encounters with illness, dying, loss, and fear. But on the whole, there are precious few encomiums penned to poor, drug-using men and women who have died with AIDS. Gay men, either as author or subject, dominate the written word in the literature of the epidemic. Their publications and booksellers are the epicenters of writing about AIDS.
Douglas Crimp has said, "Anything said or done about AIDS that does not give precedence to the knowledge, the needs, and the demands of people living with AIDS must be condemned. "[3] Taken literally, this position condemns the worth of writing about those sick or dead with AIDS unless that writing also serves in a utilitarian way the cause of those with AIDS who remain behind. But this would be a stern requirement imposed on those who want, whatever else they want to do with their writing, to testify to the worth and value of those persons who have died. Writing about the dead may or may not have explicit activist dimensions—some writing does certainly involve explicit and implicit political critique—but to declare such writing worthwhile only insofar as it advances a political or medical reformation is to deny its own inherent moral integrity. In fact, Crimp himself has come to conjoin rather than detach mourning and militancy.[4] Elegiac writing does not say all that needs to be said in the epidemic and it may be sometimes a poor substitute for informed and effective political discourse. But it is better to write something than to say nothing and thereby let death in its extinguishing finality arrogate to itself all privilege in deciding the fate and worth of human life. Elegy, or testimony, as I prefer to call it, belongs to the continuum of moral and political conscience which fuels activism in the epidemic and has an important function in the protection of the individual.[5] Such testimony also offers the opportunity for resisting the infantilizing of the dying and the dead which often occurs in the context of their health care. The moral and political dimensions of elegies and their insistence on the primacy of the individual are evident in representative examples from the literature of testimony.
The Testimonials
Barbara Peabody was among the very first to chronicle in journal form her experiences in caring for her son, sick and dying with AIDS. In The Screaming Room[ 6] she describes how her gay son, Peter VonLehn, aspired to a career in opera and theater but worked mostly as a waiter in New York. She remembers him as bright, inquisitive, musical, introspective, intellectual, imaginative, humorous, and independent. After being diagnosed with AIDS in December 1983, Peter returned from New York to live with his mother in San Diego. Peabody tells of tending her son on the good days and the bad. In this account small events loom large against the confines and constraints of Peter's illness; as a result, her story has much in common with the often slow, tedious, and oppressive narratives of prison life. There were sleepless nights and intractable diarrhea, reclusive behavior and loss of memory, endless trips to doctors and hospitals, spinal taps and drug regimens, the loss of sight, and finally the watch at the deathbed. There is pain and suffering on every page of this book. At Peter's death there is nothing left for Peabody but tears: "I am just another mother who has lost her child, who holds his empty, wasted body in her arms and mourns, grieves, cries for loss of part of her own body and soul."[7] But for all the suffering, for all the costs she paid in caring for him, the book remains nevertheless a memorial to Peter and to her love of him. And despite the suffering they both endured, she never hoped for his death.
Andrew Holleran's novel Dancer from the Dance appeared in the late seventies and told the tale of drag queen Sutherland and his handsome protégé Malone as they spent their lives looking for love in Manhattan's nights, discos, parks, and bathhouses, at summer parties in the Pines, in drugs, in any pair of eyes, really, that offered a promise of repose. Instead, now, of stories about long nights, extravagant parties, and the art of cruising which were integral to his Dancer and the later Nights in Aruba ,[8] Holleran writes mostly about the consequences of the HIV epidemic, about hospitals and funerals, about the deeply felt loss of friends, about the loss of the period he described in his haunting first novel, a period that looks to be gone forever, felled by the most archaic form of life, a virus. Nostalgia permeates these essays, which continue to appear in Christopher Street , nostalgia for the forms of intimacy and belonging which the epidemic has closed off to gay men.
Holleran also offers reflections on the all too many men in his circle who have died. There is a remembrance of Cosmo, thus nicknamed for his worldly air.[9] He and Holleran became friends in Philadelphia. Cosmo had a mania for puns as well as a wicked sense of humor. "He seemed, on his ten-speed with his knapsack, utterly independent, as if all he needed in life was a combination lock, a Penguin paperback, and a can of V-8 juice." After a separation of a few years, Holleran dialed Cosmo's number only to be told that Cosmo was dead with AIDS. "Cosmo was not like everyone else," Holleran says, "Cosmo was special." "Cosmo loved life, treasured his body, was only thirty-five, succeeded in his career, and had much to look forward to." Holleran is grieved to observe that despite the death of a person so much to be treasured that New York and the world at large could proceed as if Cosmo were utterly dispensable. The New York Times would continue to make its daily report and Chernobyl's radioactive cloud would spread westward across Europe as if there had never been a Cosmo. Though Holleran had already experienced other deaths with AIDS and knew as well as anyone that everyone dies, still he was shattered by the inexplicable death: "Cosmo's death horrified. What a waste! What an insult!" No theory could make sense of the death as a moral judgment, as the consequence of self-hate, the inability to love, or even shame at being gay: "His death does not illuminate anything that leaves us morally edified, or superior, or enlightened—it was just part of the vast human waste that is occurring; just mean and nasty."
Holleran also remembers Ernie Mickler, author of the well-known White Trash Cooking . Holleran points out that Ernie was funny, had high spirits, nerve, wit, style, and stories to tell. Mickler planned the details of his funeral down to the menu to be served at the luncheon afterward, and Holleran finds himself feeling helpless at not being able to thank his friend for this last kindness. He finds the world emptier without Ernie even as the world seems to bespeak his presence: "The day is hazy and warm, the river flat and still, the woods soft and empty, and the whole afternoon, somehow, like the lunch itself, part of Ernie."[10] Holleran also recalls Eddie, whose life Holleran found essential to the vitality of New York. Eddie lived nocturnally, was in the clubs almost every night, knew the details of New York, knew where to get a Shiatsu massage, to buy cowboy boots, to see a strip show near Times Square. Eddie unfailingly enjoyed everything new in the city: nightclubs, phone systems, winter coats. Holleran has the impression that Eddie got AIDS only because,
ironically, he was the first to do everything. After Eddie's death, Holleran finds, the city is less vital even as, somehow, Eddie remains present in spite of his death.[11] This refrain recurs in much writing about people who have died with AIDS: death does not extinguish personal presence. On the contrary, death and absence may confirm its very existence and importance.
Holleran writes about many more deaths besides. There was the death of Charles Ludlam, the founder of the Ridiculous Theater Company. Holleran is lavish in his praise here: Ludlam was actor, playwright, genius, anarchist, madman. He was loony as Rasputin and funny beyond accounting.[12] There is also a reflection on O., sick with AIDS, less known to the world but worldly nevertheless, especially as a host par excellence. Facing O.'s likely death, Holleran wonders how it is possible to thank him for the many years of wit, wine, conversation, laughter, happiness. How is it possible to make sense of so substantial a man laid waste by this disease?[13] There is an account of Michael, who came from a good family, went to Cornell, kept a garden, was a talented architect, and, before the sickness, was concupiscent and lascivious. What, Holleran wonders, did the germs need with him?[14] In tracing the swath of death through his friends, Holleran also memorializes the late George Stambolian, professor at Wellesley College and editor of the well-regarded Men on Men collections, as "handsome in a way faces were handsome hundreds of years ago, in Byzantium."[15] As the dying is not over yet, one may suppose that Holleran will offer more memorials as there comes more death day after day, name after name, without end in sight. Such portraits as these put a face on the epidemic and offer a counterliterature to the discourse of medical journals where PWAs are described as patients or cases or to the discourse of the media where PWAs are still described and represented as victims and predators. These testimonials certainly give the lie to the notion that PWAs are beyond the moral community—are both unloving and unloved. Such portraits may not always "analyze" the broad cultural assumptions which encase the epidemic, but they do identify those in whose name analysis and activism go forward. One could not, after all, find Peter VonLehn or Eddie Mickler when looking at the numbers in the latest edition of the HIV/AIDS Surveillance Report from the Centers for Disease Control. As a mere assortment of diagnoses and treatments their medical charts would also be unrevealing. If there is a counter-discourse to the stereotyping and stigmatizing uses of "AIDS," it must
begin with the names and lives of those who have borne the burden of the epidemic.
Testimony and Its Meanings
AIDS incites the impulse to memorialize, but that impulse is not uniform in its purposes or forms. The meanings of testimonial range from verbal portraiture to personal healing to examination of the meaning of sickness and death in the order of human life. Its methods range from ceremonious hagiography to self-conscious wit. The methods and styles of testimony often converge as acts of memory about the lives of the dead, and it is worth examining testimony's form and content to assess what those acts are understood to mean. Testimonial writing first creates a record of the lives of the dead, sharing details beyond name, age, and residence. Such writing often attempts to approximate—to the extent this is possible—a verbal equivalent of the presence of the dead. Yet writing is no substitute for the dead themselves, and their loss—a loss that cannot be recompensed—leaves authors like Holleran looking for answers about the meaning of the epidemic, of life itself. What can it all mean that these men suffer and die? What can all the beauty and intimacy of men be for if not to live and love in the ways they can? What can all the virtue and accomplishment of life mean if they die nonetheless?[16] If, as Holleran's writing seems to suggest, the world does not care about the dead, there are still those who do care when they write and those who do when they read testimonials. Thus is this writing also a protest at what happens to mortal beings.
This is not to say that these pieces have been written only as eulogy. Most authors of these accounts say that they have written for other reasons as well: Many speak of the need to make sense of events. Peabody said she wrote to fend off grief: "I gradually found my way out of my screaming room by sorting out and writing down all that happened to us."[17] Elizabeth Cox says that she wrote Thanksgiving , recounting her husband's death with AIDS, to create something that would help her remember, make sense of the unexplainable, and give her a place to put the anger she felt at the cruelty of life. Andrew Holleran has said too that writing offers a way of coping with adversity, even if only to probe the questions forced by unexpected death.[18] Paul Monette offers the same
motive: writing offers a small measure of power over the nightmare.[19] Much of the writing about those with HIV-related conditions also details the considerable efforts exerted by family and friends to secure help and comfort for the sick and the dying.[20]
Testimonial writing also seems to offer some measure of healing—and this is not an inconsequential good. Such writing is not typically, however, mired in its own solipsistic needs. Writers like Peabody and Holleran frequently express the hope that others will not have to go through such trials, that the epidemic will be brought to an end. Although these authors may begin with private grief, many of them consciously aim beyond the limits of personal anguish and, in articulating the need for the conquest of the epidemic, do not mistake profound sorrow as any substitute for education and social action. Without judging the extent to which she may have been successful in this regard, Elizabeth Cox says, for example, that she wrote to help overcome social ignorance and indifference to AIDS.[21] Even if testimonial writing begins as so much flailing at unbearable emotions, it nevertheless can heal and can have the effect of making it easier for others to talk about AIDS—easier for others, whatever their political, sexual, and cultural agenda, to care about the epidemic.
Borrowed Time remains the most accomplished memoir to appear in English thus far. There Paul Monette discusses the life and loss of his friend and lover, Roger Horwitz. Monette has also written about their relationship and the place of AIDS in it in a collection of poems, Love Alone .[22] Paul and Roger met at a party on Boston's Beacon Hill and were lovers for over twelve years, not without difficulties, not either without sex outside the relationship. Roger was diagnosed with AIDS in March 1985 and died in October of the following year. Monette himself also has the HIV-related disease: "The virus ticks in me."[23]
Roger's illness began as minor frets—the loss of a few pounds, minor coughing, short periods of fever, nothing really that made either of them think of AIDS—and ended in a broad array of debilitating disorders: bouts of Pneumocystis carinii pneumonia, thrush, herpes, kidney disorder, blindness, shingles, and more. Like Peabody before him, Monette tells about shuttling Roger to doctors, about experimental drugs, about all the kinds of care Roger needed, about the worries and concerns of friends and family, about watching others in their circle of friends fall ill and die after diagnoses of AIDS. Monette protects Roger in the ways that he can: providing the right food, dousing him with vitamins, steering
him clear of dirt, cautioning against strain, berating neighbors for the overflow of their septic tank.
Monette offers unreserved praise for Roger throughout the memoir:
How do I speak of the person who was my life's best reason? The most completely unpretentious man I ever met, modest and decent to such a degree that he seemed to release what was most real in everyone he knew. It was always a relief to be with Roger, not to have to play any games at all. By a safe mile he was the least flashy of all our bright circle of friends, but he spoke about books and the wide world he had journeyed with huge conviction and a hunger to know everything.[24]
Monette, moreover, even characterizes Roger as a paradigm of the classical Greek ideal of virtue, sophrosyne: the whole of virtue characterized by a harmony of soul acting according to right reason. He lavishes praise and celebrates Roger's native intellect, his commitment and devotion in their relationship, and his endurance throughout the nineteen-month course of illness. When Monette's own disturbingly low T-cell counts came rolling in, Roger was there, says Monette, with loyalty and concern.[25] Even in the worst throes of illness, Monette credits Roger with always looking on the bright side.[26] He is hard pressed to understand why Roger does not cry out against his blindness.[27] It is, Monette thinks, as if Roger had an instinct to make others feel better.[28]
Monette does not try to resurrect Roger with this memoir; nor does he mistake writing for taxidermy. It is not Roger's life that Monette is trying to hold onto here, it is his goodness . And the incentive for that effort is nothing more than the finitude of human life resisted by the counsels of human love. "Loss teaches you very fast," Monette says, "what you cannot go without saying."[29] Disease may kill, but it cannot always diminish the importance of a single human life, cannot always silence the voice of tribute. The line between praise of the dead and protest against death is a slim one indeed.
Narratives about those dead with AIDS typically praise the worth of the dead, citing variously their interests and their contributions. They speak of love of travel and cooking, attachment to friends and family, affection for pets, passion in politics, accomplishments of intellect, and madcap senses of humor. In this regard obituaries in the gay press are often more indulgent than those in mass-circulation papers. Such obituaries may describe in some detail the persons who have died with AIDS and their influence on the circle of people who loved them. Any one obituary chosen at random from, say, the PWA Newsline shows con-
siderable effort at sympathetic portraiture. For example, in describing John B. Hettwer, an artist and dancer, his lover Stephen describes him as "a striking vision of compact muscular power and physical beauty with crystal blue eyes and a golden halo of hair. He was the most generous and kind person I have ever known. His smile spoke of a warm heart, a great sense of humor, [a] sexy and confident young man of strong opinion and honest conscience."[30]
Testimonial writing does not necessarily blink away individual failings. Barbara Peabody was aware of certain failings of her son, seeing in his character the weakness that put him in the path of HIV infection; she thought him impetuous and self-destructive and inattentive to his native gifts.[31] In Borrowed Time Monette likewise expresses his anger at Roger for getting sick: "My anger was growing more and more unmanageable. But I thought I understood the difference—then, anyway—between being mad at him and being made at AIDS."[32] Elizabeth Cox also reports a great deal of anger toward her husband when she discovered his relationships with men.[33] Yet in the end anger was either a luxury made impossible by the demands of caring for the sick or it was beside the point.
It may be surprising that so many sins are forgiven and vices forgotten in writing about the dead. The living we often judge unsparingly. Why do the dead escape our harsh judgments when they can no longer exert any form of resistance or revenge? Why does vice wither away without a trace in the grave? In the end, for example, Elizabeth Cox does not dwell on the way her husband may have put her and their son at risk of HIV infection. There are no angry remonstrances in Borrowed Time about whose sexual liaisons might have been responsible for whose infection. Perhaps such forgiveness is itself an act of compassion, a way of making amends for the evil suffered in death. Silence about vices is perhaps a way of saying that no evil deserves the consequence of death or that in death there is already what punishment any theory of retribution could require.
In their spoken and unspoken meanings obituaries and other first-person accounts of the dead have much in common with the appliqué panels of the Names Project.[34] However else they might be interpreted, the panels can be seen as soft-sculpture tombstones whose display, for example, on the Capitol Mall in the District of Columbia, evokes a cemetery in visual expanse and moral purpose. The panels themselves are sometimes beautiful, witty, poignant, and funny. Even when they are simple and artless, they are motivated by a desire to name and preserve
the significance of the person who has died and to honor if not assuage the loss felt by those left behind. Letters often accompany these panels as they come into the headquarters of the Names Project. Often simple and always sad, these letters written by lovers, friends, mothers, fathers, sisters, brothers, and even strangers explain how they have come to make the panel they are submitting. They describe the persons with AIDS in an endless catalog of virtues: talented, special, courageous, compassionate, loyal, dedicated, encouraging, original, honest, kind, helpful, warm, gentle, motivating, confident, assured, artistic, funny, intelligent. The letters and panels make it clear that they seek to preserve the memory of a life that touched them, that deserves something better than silence.
The attempt to point out individual virtues is an archetypal feature of writing about the dead. Assertions of love, of worth, and of loss are universal. Some descriptions raise the religious belief of an afterlife in order to hope the dead will go on living, their virtues intact for all eternity. And it is interesting that the chief value perceived in that afterlife is not typically union with God and the glory of that experience but the chance to see human friends and loved ones again, which says as much about the origin of heaven as any other account. A hope of this kind is an assertion that one cannot be alone in the universe, that there must be something at the center of being that impels human lives toward their happiness, that people cannot live with others and love them only to have them turn to dust. Not all persons, of course, share such a religious belief, and for those who do not, death is that much more a tragedy without recompense. But what consolations there may be are nevertheless found and asserted: the time shared together, the hope that one person's struggle with AIDS will help spare others in the future or that a life's influence will continue to be felt even long after death.
Testimonials almost always protest that those who have died with AIDS have died too early, too young, with too many things undone. Implicit in such a view is the notion that death is less an atrocity if it comes later in life. Perhaps aging is after all a consolation in the way it prepares us for death by withering our bodies, minds, and even our hopes. But perhaps this is the rationalization of inevitability. If senescence were a disorder inflicted on us involuntarily by another person or caused by a communicable virus, it would be intolerable: we would condemn it outright as an immorality of the first order. Perhaps, then, we need to wonder if aging and death are any less an atrocity because they come from nature. Perhaps we need to wonder if illness, death, and grief teach us anything that we do not already know many times over.
Could it be that all death—and not only death with AIDS—is always an atrocity? That the origins of medicine are to be found in its protest? Barring any breakthrough that could stave off aging and death, we are left of course to countenance the lives we must have. In the circumstances in which we live, the years are precious enough, writers about the unexpected dead seem to say, that not even one can be spared.
There is much solemnity in elegiac tributes to the dead. Funerary rituals—obituaries, funerals, religious services—invite such responses. This very chapter has observed a grave tone. Given the link posited between humor to aggression, no one is surprised that on occasions of sickness and death humor is set aside in favor of dignified discourse. But humor and wit also represent resilient energy and strength and these forms break through in testimonials as well. The "'zine" Diseased Pariah News appropriates its name from a cultural perception of people with HIV and serves as "a forum for infected people to share their thoughts, feelings, art, writing, and brownie recipes in an atmosphere free of teddy bears, magic rocks, and seronegative guilt."[35] That desktop publication treated the death of one of its founders satirically, showing on its cover an immolated teddy bear: "Darn!" read the accompanying headline, "One of our editors is dead!" Such satirical treatment and the coupling of wit with grief do not deny the importance of death, but neither do they submit tamely to the formalism of funereal forms and cheap sentiment, and they permit expressions of strength and resilience even in the face of the epidemic. Thus is to be explained the possibility of laughter in the epidemic.[36] Laughter and not only rage function as refutation of worthlessness in the epidemic. Laughter as much as tears can affirm the worth of the dead.
Obituaries and Activism
For all the good intentions at work in memorializing, writing about the dead sometimes risks sentimental self-indulgence. It is, after all, easy to find in another's death evidence of one's own good fortune and moral nobility. The effort exerted on behalf of writing may seem, moreover, ill-justified when printed pages do not take anyone out of a hospital bed. In "Reading and Writing," Holleran says he cannot imagine anyone reading books about AIDS with pleasure. The only thing people want
to read, he suggests, is the headline: CURE FOUND. How can one write when the suffering is so real? when all that matters is taking care of friends, starting support services, and carrying out the lab work that can bring all the misery to a hasty conclusion? Writing is helpless, he says, because it cannot produce a cure, it cannot heal, and it cannot explain. The best writing, he predicts, may likely turn out to be a lament that we are as flies to wanton gods killing us for their sport or a simple list of names—those who behaved well, those who behaved badly in the epidemic.[37] Nonetheless, he acknowledges, one must continue to write if only to relieve anxiety and depression.
Other good reasons exist as well. Thus are to be explained the many AIDS volumes and articles on cultural criticism, social policy, legal analysis, medical research, and other topics yet to be considered. This wealth of motives and forms of narrative about the sick and the dead show that writing is not always an idle extravagance. On the contrary, such writing amounts to an assurance that if death cannot be staved off, lives nevertheless may be "saved" another way. French philosopher Gabriel Marcel offered an account that is revealing and relevant to the descriptions offered in so much testimony about AIDS.[38] In his analysis, testimony is always subjective, bearing on an event that is unique and irrevocable: testimony always comes after. If events or lives could be reconstructed, testimony would be superfluous. But events and lives are lost, and testimony is the only way in which it is possible to preserve a sense of the worth and merit of persons: "To witness is to act as guarantor."
Thus construed, testimony is even morally obligatory inasmuch as it is an essential part of our relationships with one another, as much as honesty or fidelity. Grief and mourning are not therefore only psychological states serving cathartic resolution of grief or anguish. The open affirmation and willingness to face disbelief which define testimony are part of morality itself. Testimony is thus a judgment of worth, an estimate of loss, an acknowledgment of limitations, and for those who remain behind an opportunity for intimacy.[39] Testimony about the dead is not driven by a desire to overcome death but to prevent it from eroding the meaningfulness of life. Testimony, not death, is the last word.
The worth of writing and speaking in protest or lament is not to be undervalued; it is something, after all, other than tears writ large. It is certainly true that reading about AIDS to delight in the suffering of one's moral enemies would be ghoulish, yet it would be worse, by several orders of magnitude, if there were no writing at all about the epidemic
or the dead. The narratives about the dead with AIDS cannot by themselves generate lab space or produce educational programs, but they have their place in the order of human needs. It is not surprising that these narratives typically focus on the unique role the PWA held in the narrator's life (as son, friend, lover, husband) and those qualities that did not deserve the end to which they came. This is why those narratives which try to summarize a person by demographics of race, occupation, and residence fail to be morally interesting or convincing. A testimony is more than demographics. Neither does testimony attempt to substitute words for persons; that would be mere fetishism. Testimony is witness before an indifferent world about the worth and merit of persons. And thus one writes for a world unconvinced that someone was here and that, death notwithstanding, a presence remains.
Personal names loom large in AIDS testimony because we understand names as symbols of persons, not as summaries. The effort in AIDS testimony to ensure that names endure, names like Peter VonLehn, Roger Horwitz, and Eddie Mickler, can also be seen in those memorials that typically insist on the primacy of names. All of these shun the horror of mass graves. In the years following World War II the Imperial War Graves Commission listed in page after page of the seven volumes of the Civilian War Dead in the United Kingdom 1939–1945 the names of civilians killed in the course of the war, many of whom were killed by bombs falling on their homes. Inside the west door of Westminster Abbey in London one of these volumes is always open to display the names of some of those who died: "George Alfred Yeomans. Age 46; of 10 Troutbeck Road. Husband of Laura Rose Yeomans. 2 August 1944 at 10 Troutbeck Road," or "Beryl June Yeomans. Age 15; of 10 Troutbeck Road. Daughter of George Alfred Yeomans. 2 August 1944 at 10 Troutbeck Road." Like this register of persons, the Vietnam Memorial in Washington is finally remarkable not because of its materials, form, or design but because it found room for the name of every person who died during that divisive conflict and is thus a reminder that such testimonials are not finally about art but about persons.
Literary critic Jeff Nunokawa has pointed out that there is a deep cultural presumption associating male homosexuality with death as a foreordained extinction.[40] A cultural tradition which defines death as an essential attribute of gay men, of course, places unique demands on writers who reject that damning linkage. Some memorialists so want to distance their dead from the tradition of "deadly" homosexuality that they take pains, even on panels in the Names Project, to state the route
of infection so that the deceased is not stigmatized with homosexuality and its imagined evils. This kind of cemeterial apartheid, of course, extends the cultural presumption that some people with AIDS are and some are not "innocent" victims: there are those who develop AIDS following a blood transfusion, artificial insemination, or robust heterosexual promiscuity, as in the case of Magic Johnson, and then there are gay men.
It is a challenge to memorialize men who are generally supposed to be responsible for their own death. It is also difficult to memorialize gay men without invoking and reinforcing the view that homosexuality leads ineluctably to death, especially when other views of the lives of gay men are pervasively and systematically absent from the media of entertainment and education. Many of the writers discussed here have met this challenge inasmuch as they create what Nunokawa has called alternative obituaries.[41] While some experiences have been fictionalized, first-person narratives and obituaries are the primary venue for writing about those who have died with AIDS. This writing remains primarily the province of gay authors and readers, if only because gay authors and readers find obstacles in venues outside their control. Some newspapers, for example, will not list gay lovers in obituaries, even if the relationship had existed for years, even if the biological family had long since been geographically and emotionally absent.[42] Gay newspapers, by contrast, routinely name surviving partners and often use the word "lover" in place of the usage preferred by some mainstream papers, "companion." They will often mention the number of years the men spent together and, along with blood relatives, may also cite the friends who from day to day became a gay man's family. By themselves, of course, testimonials written for gay men will not rectify larger cultural views that gay identity is necessarily doomed, but they do offer gay men the opportunity to speak with their own voice about the meaning, their meaning of their lives and death.
While struggle about public representations of gay men continues even in regard to their obituaries, it is characteristic nevertheless of all obituaries, regardless of their policies about survivors, to find what kind word there is to say of the dead, whether he or she is the chairman of a university academic department, a Roman Catholic priest, a bartender, or a librarian. As a matter of preserving the meaning of lives, testimony in fiction, eulogy, and monument is a moral act. It is the moral heart of writing about the epidemic. It is the essence of the deeply personal Names Project. Testimony is an essential part of any moral analysis of the
epidemic. It is an important way by which to challenge the public mythology about promiscuous, fast-track, unloving gay men. The grief of the epidemic and the incentive to memorialize are no mere biological reflexes; they are an assertion against the leveling effect of death that persons are not replaceable, that death does not nullify presence. They can also be important embodiments of moral wisdom and vehicles of social criticism.
In Borrowed Time the metaphor Monette invokes to represent the experience of AIDS is that of living on the moon. But it is clear that Monette does not intend the moon as the faithful, consoling light of the night sky, the Roman patroness of the hunt. He invokes the moon as a barren and lifeless expanse inhospitable to human hope and love.[43] Only those who know the epidemic firsthand can know what this desolation is like, Monette says; those who live in the lush expanse of good health cannot appreciate the hopes and fears AIDS brings, cannot appreciate the rarity of abundant health. It is no wonder then that Monette finally blurts out to a friend: "I'm not going to be around long myself, and I don't want to talk to people without AIDS anymore."[44]
But in their writings Monette and all the others mentioned here do talk to people without AIDS. Indeed, they will be talking to people with and without AIDS as long as their writing endures. They do so because the failure to testify would amount to betrayal, would be continuous in meaning with the absurdity of the epidemic. The personal narratives of those dead and dying of AIDS may have ambitions in regard to social reformation and medical advance, but they all begin as the story of an individual life, an individual person. This kind of narrative is nothing so much as a will to preserve in ink and paper the virtues of persons that are lost in the more evanescent medium of flesh. It is what way there is to resist the absurdity of suffering and death. To be sure, memorial testimony is not the only form of discourse required to speak against the absurdities of suffering and death, especially to the extent the epidemic is abetted by political and social cowardice and hypocrisy, but it is a necessary voice and one that has moral import even where it reveals only the homely truths that we deserve better than we get, that we mourn more than the world can know, that we are each other's only refuge.