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The Exotic and the Mundane
At about 6 A.M. on June 26, 1982, Solange Eliodor expired in Jackson Memorial Hospital in Miami. When not in the hospital, the twenty-six-year-old Haitian refugee spent her final year in a rickety boat, which reached the shores of Florida the previous July, and in prison, as the reluctant ward of the U.S. Immigration and Naturalization Service (INS). The Dade County Medical Examiner denied that the young woman showed any signs of tuberculosis—"She didn't have it. Period."—although the INS had initially maintained otherwise. The medical examiner also said that "there was no sign the woman suffered a blow to the head," an allegation raised by the director of the Haitian Refugee Center. Other Haitians interned in the Krome Avenue INS detention facility may have been dealt blows to the head, but Solange Eliodor was not one of them. The verdict was toxoplasmosis of the brain, a parasitic infection that, though common, is usually rendered harmless by immune defenses. The woman's death merited a headline in the June 30 edition of the Miami Herald: "Krome Camp Detainee Died from Infection Transmitted by Cats."
The details of the entire grisly story—the flight from Haiti in a boat, INS detention, the newspaper headline, the mistaken accusations of both tuberculosis and a blow to the head—are of a piece with a single, if complicated, narrative. Early in the AIDS pandemic, a number of Haitians, including Solange Eliodor, fell ill with opportunistic infections characteristic of the new syndrome. Some of the ill Haitians lived in urban Haiti; some had emigrated to the United States or Canada. Unlike most other patients meeting diagnostic criteria for AIDS, the Haitians diagnosed in the United States denied homosexual activity or intravenous drug use. Most had never had a blood transfusion. AIDS among Haitians was, in the words of North American researchers, "a complete mystery." In 1982, U.S. public health officials inferred that Haitians per se were in some way at risk for AIDS, and suggested that unraveling "the Haiti connection" would lead researchers to the culprit. In a sample of the melodramatic prose that came to typify commentary on Haitians with AIDS, one reporter termed the incidence of AIDS in Haitians "a clue from the grave, as though a zombie, leaving a trail of unwinding gauze bandages and rotting flesh, had come to the hospital's Grand Rounds to pronounce a curse" (Black, in Abbott 1988: 254–255).
The Haitian cases and subsequent "risk-grouping" spurred the publication of a wide range of theories purporting to explain the epidemiology and origins of AIDS. In December 1982, for example, a physician with the U.S. National Cancer Institute was widely quoted as announcing that "we suspect that this may be an epidemic Haitian virus that was brought back to the homosexual population in the United States." This theory, although unbolstered by research, was echoed by other physicians and scientists investigating (or merely commenting on) AIDS. In North America and Europe, other commentators linked AIDS in Haiti to "voodoo practices." Something that went on around ritual fires, went the supposition, triggered AIDS in cult adherents, a category presumed to include the quasi-totality of Haitians. In the October 1983 edition of Annals of Internal Medicine, for example, physicians affiliated with the Massachusetts Institute of Technology related the details of a brief visit to Haiti and wrote, "It seems reasonable to consider voodoo practices a cause of the syndrome."
Why, precisely, would it be "reasonable to consider voodoo practices as a cause of the syndrome"? Did existing knowledge of AIDS in Haiti make such a hypothesis reasonable? Had voodoo been previously associated with the transmission of other illnesses? Careful review of the scholarly literature on AIDS and on voodoo would lead us to answer these three questions with "No reason," "No," and "No." The persistence of these theories represents, in fact, a systematic misreading of existing epidemiologic and ethnographic data. But ideas about the Haitian cult seemed to resonate with emerging notions about AIDS. Such a resonance might have been predicted decades earlier: "Certain exotic words are charged with evocative power," wrote Alfred Métraux in 1959. "Voodoo is one. It usually conjures up visions of mysterious deaths, secret rites—or dark saturnalia celebrated by blood-maddened, sex-maddened, god-maddened' negroes" (Métraux 1972: 15).
Although further acquaintance with the syndrome made it difficult to posit a Haitian origin for AIDS, armchair theorists were reluctant to let go of voodoo altogether. The Journal of the American Medical Association published a consideration of these theories under the fey title, "Night of the Living Dead." Its author asks, "Do necromantic zombiists transmit HTLV-III/LAV during voodooistic rituals?" Tellingly, he cites as his source not the by then substantial scientific literature on AIDS in Haiti, but the U.S. daily press:
Even now, many Haitians are voodoo serviteurs and partake in its rituals (New York Times, May 15,1985, pp. 1, 6). (Some are also members of secret societies such as Bizango or "impure" sects, called "cabrit thomazo," which are suspected to use human blood itself in sacrificial worship.) As the HTLV-III/LAV virus is known to be stable in aqueous solution at room temperature for at least a week, lay Haitian voodooists may be unsuspectingly infected with AIDS by ingestion, inhalation, or dermal contact with contaminated ritual substances, as well as by sexual activity. (Greenfield 1986:2200)
Social scientists were also seduced by the call of the wild. In a heroic effort to accommodate all the exotic furbelows available in the American folk model of Haitians, the following scene is depicted by Moore and LeBaron (1986:81, 84): "In frenzied trance, the priest lets blood: mammal's [sic] throats are cut; typically, chicken's [sic] heads are torn off their necks. The priest bites out the chicken's tongue with his teeth and may suck on the bloody stump of the neck." These sacrificial offerings, "infected with one of the Type C oncogenic retroviruses, which is closely related to HTLV," are "repeatedly [sic] sacrificed in voodoo ceremonies, and their blood is directly ingested by priests and their assistants." The model is completed with the assertion that "many voodoo priests are homosexual men" who are "certainly in a position to satisfy their sexual desires, especially in urban areas."
Similarly lurid scenarios were taken up in the popular press, which drew upon readily available images of voodoo, animal (and even human) sacrifice, and boatloads of "disease-ridden" or "economic" refugees. Such articles had a considerable impact on Haiti, which once counted tourism as an important source of foreign currencies. But the AIDS association affected Haitians everywhere, especially those living in the United States and Canada. Gilman (1988a: 102) might not be exaggerating when he suggests that "to be a Haitian and living in New York City meant that you were perceived as an AIDS 'carrier.'" Many of the million or so Haitians living in North America complained that speculations about a Haitian origin of AIDS had led to a wave of anti- Haitian discrimination.
What gradually became known about the new syndrome in Haiti seemed to have far less impact on popular and professional "AIDS discourse" than did preexisting conceptions of the place. The link between AIDS and Haiti seemed reminiscent of a North American folk model of Haitians. The contours of the model are suggested by a recent study of Haitians living in New York. It recalls the image Haitians found waiting for them when, in the 1970s, many emigrated to the United States: "Haitians were portrayed as ragged, wretched, and pathetic and were said to be illiterate, superstitious, disease-ridden and backward peasants" (Glick-Schiller and Fouron 1990:337). Historical study shows that Haiti has long been depicted as a strange and hopelessly diseased country remarkable chiefly for its extreme isolation from the rest of the civilized world. This erroneous depiction fuels the parallel process of "exotification" by which Haiti is rendered weird. According to a journalist writing in 1989 in Vanity Fair, "Haiti is to this hemisphere what black holes are to outer space." Or consider the epithet given Haiti by a U.S. news magazine: "A bazaar of the bizarre." Over the past decade, AIDS has been incorporated into that folk model so that, now, AIDS is every bit as necessary as any of the preceding referents.
Fieldwork in Haiti, 1983–1990
This study is based in large part on fieldwork in rural Haiti. Although both the folk model about Haitians and the nature of AIDS-related discrimination against them could best be studied in North America, an interest in AIDS in Haiti mandated research on the island. HIV did not only affect Haiti indirectly, through the prejudices of North American scientists, employers, landlords, and tourists. In 1983, the country was in the first years of its own substantial AIDS epidemic. The featured topic of that year's conference of the Haitian Medical Association was "the new syndrome." It was not clear at that time just what was causing AIDS, but many experts were already betting on a retrovirus that attacked the immune system, eventually rendering its host vulnerable to infectious agents. At the conference, several Haitian clinicians presented case material that put the quietus on any doubts whether or not the syndrome seen in Haiti was the same as that encountered in the urban United States. Clinical presentations, suggestive of immune deficiency and subsequent opportunistic infection, were often strikingly similar in these very disparate settings.
What was more striking, however, was the accusatory tone of much of the symposium. Blame and counterblame were a prominent part of these usually sober scientific gatherings. Haitian researchers claimed that North American physicians and scientists had erroneously painted Haiti as the source of the worldwide AIDS pandemic. The Haitian scholars asserted that such a hypothesis reflected North American racism, and countered that the syndrome had been brought to Haiti by tourists from the United States—and not vice versa, as had been claimed. Haitians were not "mysteriously" at risk for AIDS, they argued, documenting the role of international homosexual prostitution, bisexuality, and a contaminated blood supply in shaping the contours of the Haitian epidemic.
The debates in Port-au-Prince soon made it to the front page of the New York Times, where the president of the Haitian Medical Association attacked the "unscientific and racist attitude" of epidemiologists from the U.S. Centers for Disease Control. He was seconded not only by his colleagues on the island, but by hundreds of Haitian community leaders living in North America. Several deplored an epidemic not of AIDS, but of AIDS-related discrimination against Haitians. There were reports of American mothers who would not permit their children to attend school with Haitian-born students; of families "with black skin and French names" evicted from rented housing; of Haitian cab drivers who had learned to maintain that they were from Martinique or Guadeloupe (ironically, islands with higher AIDS attack rates than Haiti); of endless quests for jobs for which Haitian applicants were "just not right." Accusation, it was fast becoming clear, was a recurrent theme in debates born of the AIDS pandemic.
A similar dynamic would later be played out in the village of Do Kay, where the majority of the ethnographic research presented in this study was conducted. A community of fewer than 1,000 people, Do Kay stretches along an unpaved road that cuts north and east into Haiti's central plateau. By the end of the summer of 1983, a careful survey had revealed that no one in Do Kay had AIDS. In fact, when I initiated research there the word sida, as AIDS was termed, was just beginning to work its way into the rural Haitian lexicon. In Do Kay, illnesses are usually the topic of much discussion; sida was not. Some villagers had never heard of the disorder already held to be responsible for the ruin of the once important urban tourist industry; others had only vague ideas about causation or typical clinical presentation.
But HIV, the silent precursor of AIDS, was probably already present in Do Kay. If villagers were then aware of but uninterested in sida, interest in the illness was almost universal a scant three years later. By 1987, one of the villagers was dying from AIDS, and another was gravely afflicted. Further, ideas about the disorder and its origin had changed drastically. This was only to be expected. If no collective representation of sida existed in 1983, when the subject elicited little interest and no passion, it is not surprising that some sort of consensus began to emerge when what was at stake was nothing less than the life or death of a fellow villager. There resulted a profusion of illness stories; active debate about what constituted the key features of sida, its course, and its causes was suddenly the order of the day. These narratives substantially shaped nascent understandings of sida, and helped to place a new disorder in the context of much older understandings of sickness and misfortune.
And there had been plenty of sickness and misfortune in the area around Do Kay. Indeed, the advent of a new and fatal disease was, in the words of one who lives there, "the last thing." The last thing, that is, in a long series of trials that have afflicted the region's rural poor. When people from Do Kay speak of sida, it is quite often in the same breath as other afflictions, past and present, that have rendered life in rural Haiti a precarious enterprise. It is almost a cliché, now to note that Haiti is "the poorest country in the hemisphere," and "one of the twenty-five poorest in the world." An officially reported per capita annual income of $315 in 1983 misrepresented the situation in the countryside, where it hovered around $50. Expert opinion on Haiti has long been given to grim assessments and dour predictions.
With each passing year, it seemed in rural Haiti that simple survival was becoming increasingly difficult. The years between 1983 and 1990 were dramatic ones in which to be doing fieldwork there. The advent of HIV was often upstaged, first by the popular revolt that in 1986 helped to bring down the Duvalier family dictatorship, in place for thirty years, and then by vicious efforts to repress an embryonic popular movement. The years following 1985 have been punctuated by six coups d'état, several politically motivated massacres, and the striking irruption of the previously silent poor. These years have been rife with the Machiavellian pronouncements of a diverse cast of characters including unreconstructed Duvalierists, returning exiles, and representatives of the United States embassy. As will become clear in the following chapters, these "large-scale" events and commentaries regularly impinged upon the lives of those living—and dying—in Do Kay.
Framing Analysis in Medical Anthropology
Caribbean ethnography has for decades been replete with reminders of the local effects of large-scale change, and Do Kay offers an extreme (if inapparent) example. During the rainy season, the journey from Port-au-Prince can take several hours, adding to the impression of isolation. That impression, however, is misleading. The village owes its existence to a project conceived of in the Haitian capital and drafted in Washington, D.C. Do Kay is actually a settlement of refugee peasant farmers displaced over thirty years ago by Haiti's largest hydroelectric dam. Before 1956, the village of Kay was situated in a fertile valley, near the banks of the Rivière Artibonite. For generations, these families had farmed the broad and gently sloping banks of the river, selling rice, bananas, millet, corn, and sugar cane in regional markets. Harvests were, by all reports, bountiful; life there is now recalled as idyllic.
Excerpted from AIDS and Accusation by Paul Farmer. Copyright © 2006 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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Preface to the 2006 Edition
Preface to the First Edition
Part I: Misfortunes without Number
2 The Water Refugees
3 The Remembered Valley
4 The Alexis Advantage: The Retaking of Kay
5 The Struggle for Health
6 1986 and After: Narrative Truth and Political Change
Part II: AIDS Comes to a Haitian Village
10 "A Place Ravaged by AIDS"
Part III: The Exotic and the Mundane: HIV in Haiti
11 A Chronology of the AIDS/HIV Epidemic in Haiti
12 HIV in Haiti: The Dimensions of the Problem
13 Haiti and the "Accepted Risk Factors"
14 AIDS in the Caribbean: The "West Atlantic Pandemic"
Part IV: AIDS, History, Political Economy
15 Many Masters: The European Domination of Haiti
16 The Nineteenth Century: One Hundred Years of Solitude
17 The United States and the People with History
Part V: AIDS and Accusation
18 AIDS and Sorcery: Accusation in the Village
19 AIDS and Racism: Accusation in the Center
20 AIDS and Empire: Accusation in the Periphery
21 Blame, Cause, Etiology, and Accusation
22 Conclusion: AIDS and an Anthropology of Suffering