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Global health

Global health

Culture and Infectious Disease. Connecting Pandemics

Address the following questions:

How can the Haitian experience with HIV help us to understand the variation in the understanding of COVID-19?

What social, cultural, or other factors shape how COVID-19 is understood in the United States?

Given the diverse perspectives and interpretations, can a unified understanding of COVID-19 in the US be fostered?

What role do social class and ethnic/racial inequality play?

550 WORDS 

ARTICLES

PAUL FARMER Department of Anthropology Harvard University

Sending Sickness: Sorcery, Politics, and Changing Concepts of AIDS in Rural Haiti

In this article I trace the emergence of a collective representation of AIDS in a village in rural Haiti. I initiated investigation of local understand- ings of AIDS years before the advent of the illness to the community itself and continued documenting the subsequent elaboration of a fairly de- tailed and widely shared cultural model of the new disorder. Through following serial interviews with the same persons over a period of six years, one can discern the rate at which consensus was achieved, the events which led to it, and the sign8cance of preexisting interpretive frameworks for current understandings of AIDS. This case contributes to the anthropological study of cultural meaning in formation and transfor- mation.

IDS presents new challenges to medical anthropology. Some are theoret- ical and not substantially different from the challenges faced by other eth- A nographers who seek to study, comprehend, and describe new phenom-

ena. Others involve the ethical dilemmas inherent in both the study of a terrible new affliction for which there is only limited therapeutic recourse and the deeply vexed question of how anthropologists might best contribute to the effort to pre- vent transmission of HIV. What follows is a processual ethnography of the advent of AIDS in Do Kay, a small village in Haiti’s central plateau. It is primarily a descriptive exercise, and the theoretical questions posed relate to the description of a new illness. Its chief goal is to call attention to the problems inherent in study- ing cultural meaning while it is taking shape.

The need for a more processual approach to the study of illness representa- tions is most dramatically illustrated when one is witness to the advent of a new disorder or one previously unknown to one’s host community. Some of the steps in this process of growing awareness are easily intuited. Before the anival of the new malady there exists no collective representation of the disorder; then comes a period of exposure, if not to the illness, then to rumor of it. With time and ex- perience, low interinformant agreement may give way to a cultural model shared by the majority of a community.’ What determines whether or not consensus is

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CHANGING CONCEITS OF AIDS IN RURAL HAITI I

reached? In studies of illness representations, medical anthropologists have usu- ally asked, “To what degree is the model shared?” But when studying a truly novel disorder, a new set of questions pertains. How does cultural consensus emerge? How do illness representations, and the realities they organize and con- stitute, come into being? How are new representations related to existing struc- tures? How does the suffering of particular human beings contribute to collective understandings, and how much of individual experience is not captured in cultural meaning? My recent fieldwork in rural Haiti addresses these questions. Though primarily a study of a cultural model, the following account is also the story of three individuals with AIDS, for their experience is what made AIDS matter in Do Kay. This account is distilled from a series of interviews dating from 1983- 84 to the present. These reveal not just the role of culture in structuring illness narratives-we already know a great deal about that-but the ways in which those narratives are elaborated, how they change over time, the embeddedness of rep- resentations (also changing) in narratives, and their significance to the experience of illness.

The Changing Significance of AIDS

The Republic of Haiti’s role in the AIDS pandemic has been unique and unenviable. Like many other countries in the Caribbean, it has been gravely af- fected by HIV. Based on the number of AIDS cases per 100,OOO population, Haiti is among the world’s 20 most affected nations. Many more Haitians have been exposed to the virus. Although no large, random surveys have been conducted, a series of epidemiologic studies conducted between 1985 and 1987 indicate that fully 9% of 2152 “healthy urban adults” were seropositive for HIV (Pape and Johnson 1988). AIDS has recently been reported on Haitian radio to be the leading cause of death among Haitian adults between the ages of 20 and 49. While some contest this assessment, it is clear that HIV disease will mean great suffering in a nation that can ill afford yet another health burden.

For the inhabitants of Do Kay, the village in which most of the ethnographic material presented here was collected, the advent of a new and fatal disorder was, in the words of one person who lives there, “the last thing.” The last thing, that is, in a series of trials that have afflicted the rural poor of Haiti. The inhabitants of Do Kay, which stretches along an unpaved road cutting through the country’s central plateau, have had more than their share of trials. During the rainy season, the road from Port-au-Prince can take several hours to traverse, adding to the impression of isolation and insularity. The impression is misleading, however, as the village owes its existence to a project conceived in the Haitian capital and drafted in Washington, DC. Consisting in 1989 of fewer than 1 ,OOO persons, Do Kay is composed mainly of the families of peasant farmers displaced some 30 years ago by Haiti’s largest dam.

Before 1956, the village of Kay was situated in a deep and fertile valley, near the banks of the Rivi5re Artibonite. For generations, the villagers farmed the broad and gently sloping banks of the river, selling rice, bananas, millet, corn, and sugarcane in regional markets. Harvests were, by all reports, bountiful; life there is now recalled as idyllic. When the valley was flooded, the majority of villagers were forced up into the hills on either side of the new reservoir. Kay

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became divided into “Do” (those who settled on the stony backs of the hills) and “Ba” (those who remained down near the new waterline). By all standard mea- sures, both parts of Kay are now very poor; its older inhabitants often blame their poverty on the massive buttress dam a few miles away, and note that it brought them neither electricity nor water. The sole improvements in their lives, they ob- serve, have been the construction of a school, a clinic, and other amenities built and managed by a Haitian priest who has been working in the area for over 30 years.

Early in 1987 the first case of AIDS was registered in Do Kay. Because in- vestigation of local understandings of AIDS had been initiated four years before this unfortunate occurrence it was possible to document the subsequent elabora- tion of a fairly detailed and widely shared cultural model of AIDS. By conducting serial interviews with the same people, it was possible to document the rate at which consensus was achieved and the events that led to it.* Another important event also occurred during the course of this study. In 1986 Haiti’s longstanding family dictatorship collapsed, which led to changes that were keenly felt in village Haiti. These changes also had a profound effect on the process of illness repre- sentation, for they altered substantially the ways in which illness and other kinds of misfortune were discussed. The following account attempts to illustrate the forces that were significant in defining a collective representation of AIDS and also to suggest how these forces were revealed to the ethnographer.

1983-84 “A City Sickness”

In 1983, when my research began, the word s i d ~ , ~ from the French acronym for syndrome d‘immunod&icience acquise, was often heard in Port-au-Prince. The term gained currency following the association of this syndrome with Haiti in the North American press. By early 1982 a number of Haitian immigrants had been seen in Florida and New York hospitals with infections characteristic of a new syndrome. Unlike other patients meeting diagnostic criteria for AIDS, the Haitians stated that they had not engaged in either homosexual activity or intra- venous drug use; most had never had a blood transfusion. The United States Cen- ters for Disease Control (CDC) inferred that Haitians as a group were in some way at risk for AIDS. The popular press drew upon readily available images of squalor, voodoo, and boatloads of “disease-ridden’ ’ or “economic” refugees, and painted Haitians as the principal cause of the American epidemic (see Centers for Disease Control 1982; Nachrnan and Dreyfuss 1986). As Dr. Robert Auguste of the Haitian Coalition on AIDS remarked in a Miami Times article in 1983, “In the annals of medicine, this categorization of a nationality as a ‘risk group’ is unique. ”

The effects on Haiti of this association with AIDS were quickly felt and far- reaching4 Throughout the 1970s, as international memories of “Papa Doc” Du- valier began to fade, tourism had begun to assume increasing importance in Hai- ti’s economy. By 1980 it had become the country’s second largest source of for- eign currency and generated employment for thousands living in and around Port- au-Prince. The effects of the AIDS scare were dramatic and prompt: the Haitian Bureau of Tourism estimated a decline from 75 ,OOO visitors in the winter of 198 1- 82 to under 10,OOO the following year. Six hotels folded, and as many more de-

CHANGING CONCEPTS OF AIDS IN RURAL HAITI 9

clared themselves on the edge of bankruptcy. Several hotel owners were rumored to be planning a lawsuit against the CDC. Haitian government officials reacted in a manner reflecting the deep contradictions of the Haitian ruling class. Within months one was hearing the classic mixture of antiracist nationalism, followed by local repression of those held responsible for “spreading AIDS. ” These measures did nothing to counter the collapse of the nation’s tourist industry. As Abbott has recently observed, “AIDS stamped Haiti’s international image as political repres- sion and intense poverty never had” (1988:255).

As thousands of urban Haitians were left without jobs, the word sidu took on specific connotations. Few city dwellers were unaware of the syndrome, though the majority of them could not have known individuals with AIDS. The word sidu was not yet well established, however, in the rural Haitian lexicon. In interviews conducted in early 1984, only one of 17 informants mentioned sida as a possible cause of diarrhea. The term did not occur in unprompted discourse about tuberculosis, the most common infection among Haitians with AIDS, nor did it figure in talk about diarrhea or other disorders. When questioned, 15 out of 20 villagers said that they had heard of sida, and a dozen of them associated cer- tain symptoms or stigmata with this label. But many of these attributes were not, in fact, commonly seen in Haitians with AIDS.

Most of the villagers who spoke of sidu noted that they had heard of the disorder on the radio or during trips to the ~ a p i t a l . ~ There was considerable dis- agreement as to what the chief characteristics of sidu might be. In the 1983-84 interviews, seven out of 20 mentioned three aspects of sidu: the novelty of the disorder, its relation to diarrhea, and its association with homosexuality. The ma- jority mentioned one or two of these attributes. Only five noted that sidu is lethal. Three thought that it was originally a disease of pigs; three were also of the opin- ion that despite the contrary claims of the foreign press, sidu had been brought to Haiti by North Americans. Two others asserted that “sidu is the same thing as tuberculosis.” In early 1984 Mme. Sylvain, a 36-year-old market woman, of- fered the following commentary, which resembles that of several of her covilla- gers .

Sida is a sickness they have in Port-au-Prince and in the United States. It gives you a diarrhea that starts very slowly but never stops until you’re completely dry. There’s no water left in your body. . . . Sida is a sickness that you see in men who sleep with other men.

She had little else to say about the syndrome, although Mme. Sylvain was seldom at a loss for words when sickness was the topic.6 These preliminary interviews demonstrated that in Do Kay, where illnesses were usually the topic of much dis- cussion, sida was not. When one villager was asked if he and his associates were reluctant to speak about sidu, he responded, “Why should that be? There is no one who says we can’t talk about sida. But it is nothing that we have seen here. It’s a city sickness (maludi luvil). * ’ In the first year of my research, all talk about the disorder was prompted by questioning; there were no illness stories or “ther- apeutic narratives” about sidu. For the people of Do Kay, already bent under the unremitting burdens of poverty and sickness, there was little at stake regarding AIDS.

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Before 1985, then, one would have been hard pressed to delineate a collec- tive representation of AIDS in this part of rural Haiti. Despite several individuals’ elaborate explanatory models, despite the savvy of market women like Mme. Syl- vain, the lack of natural discourse about sidu and the low interinformant agree- ment on its core characteristics suggest that, during the 1983-84 period, no cul- tural model of AIDS existed in the area around Kay.

1985-86: Mklange Adult2re de Tout

During the course of 1985-86 relative silence concerning sidu gave way to discussion of the new illness in the Kay area, and a more widely held represen- tation slowly began to emerge. Illness stories were beginning to be recounted, but they were invariably the tales of someone else, somewhere else-people who had died in Mirebalais, the nearest large market town, or in Port-au-Pnnce. There was rumor, too, of mistreatment of Haitians in far-off North America, and one villager often spoke of a cousin in New York who had lost her job, “because they said she was a Haitian and an AIDS-carrier.’’

Fully 18 of 20 informants interviewed during this period referred directly to “blood” in our discussions of sidu, and for many other residents of Do Kay as well, sidu was a sickness of the blood. Perhaps the most commonly heard obser- vation was that sidu “dirties your blood” (li sul sun ou). There was frequent al- lusion to “poor blood,” usually a gloss for anemia, as a prodrome of side and some referred to the dangers of blood transfusion. For example, when in the course of an obstetrical intervention Ti Malou Joseph needed a unit of blood, sev- eral of her covillagers observed Chat, given the “sickness going around” (mufudi deyo a), a transfusion was tempting fate.7 For some, it was a question of exposing the transfusion recipient to a microbe (mikwob); for others, one of “mixing bloods that don’t go together,” causing reactions that eventually ‘‘degenerate into sidu. ” Several informants began to speak of sidu as a slow but irreversible process that was invariably fatal.

Others interviewed in the summer of 1985 stated that “bad blood” (move sun), a somatosocial disorder widespread among Haitian women, put one at risk for sidu. As Mme. Mathieu put it, “You’re very weak when you have move sun, and you can more easily catch sidu.” Although two of the 20 villagers inter- viewed in 1985 felt that the new illness was a “very severe form of move sun,” the rest of those who mentioned move sun underlined distinctions between it and sidu. The observations of Mme. Kado, a 51-year-old woman who worked with the priest who had founded the school in Kay, were typical of the opinions gar- nered in late 1985.

[Sida] spoils your blood, makes you have so little blood that you become pale and dry. It first causes little blemishes (bouron) that rise all over your arms and legs. That tells you that the blood is bad, and makes you think of a simple case of move sun. But sida has no treatment, it’s not like move san. Anyone can get this, but it is most common in the city.

In much of Haiti, disvalued experiences-shocks, disappointments, anger, fright-may be embodied as disorders of the blood. The significance of this con- ceptual framework led Weidman and her coworkers to speak of the “blood par- adigm” underlying the health-related beliefs of their Haitian informants in Miami

CHANGING CONCEP~S OF AIDS IN RURAL HAITI 11

(Weidman 1978; see also Farmer 1988; Laguerre 1987). It is within this paradigm that are found the causal links between the social field and alterations in the qual- ity, consistency, and nature of blood. During much of the 1985-86 period, preex- isting beliefs about blood lent form to vague understandings of sidu, which was coming to represent an irreversible pollution caused, depending on whom you asked, by blood transfusions, same-sex relations, weakness from overwork in the city, or travel to the United States. As will be clear, however, the contributions of this paradigm to the emerging representation waned with direct experience of the disorder, and the “tuberculosis paradigm” emerged as the more important of preexisting models.

The year 1985 also marked the debut of a preventive campaign conducted by the nation’s health authorities. There were songs about sida and numerous radio programs, all in Creole and targeted toward the peasantry. Less important were the many articles in the print media and the posters and billboards declaring sidu to be a public menace to which all were vulnerable. Although villagers may have known more about the syndrome as a result of these public health efforts, it was not yet a compelling subject of everyday discourse, which was increasingly, if somewhat clandestinely, dedicated to discussion of national level political events. The Duvalier dictatorship, in place for almost 30 years, was beginning to totter, and more and more rural Haitians joined the chorus calling for Duvalier’s re- moval.

After years of silence the people of Do Kay joined in this chorus. Because peasants had long been excluded from direct participation in politics, the shift was a significant one and had an impact on the way that illness was discussed in rural Haiti. At first, talk of sidu was simply submerged in all-important discussions of national politics. When the syndrome was addressed, it seemed that it was often invoked to malign the regime or the United States. On New Year’s Day 1986, several of my friends from Mirebalais joked that Duvalier was a musisi (homo- sexual) who had contracted the syndrome from one of his msisi ministers. Shortly after Duvalier’s departure one market woman in her mid-fifties angrily denounced AIDS as part of “the American plan to enslave Haiti. . . . The United States has a traffic in Haitian blood. Duvalier used to sell them our blood for trans- fusions and experiments. One of these experiments was to make a new sick- ness.

Later it became clear that the fall of the Duvalier dictatorship gave a boost to stories about sidu. To judge from trends observed in Kay and surrounding vil- lages, rural Haitians began to feel that they could speak more candidly about mis- fortunes in general, and this alteration in the “rhetoric of complaint” may have had a determinant effect on what would prove to be enduring understandings of ~ i d a . ~

One of the first slogans to become popular shortly after Duvalier’s fall was bubouket la tonbe. A literal English equivalent would be “the bridle has fallen off,” but the phrase would be better rendered as “the muzzle is off.” Although few began openly talking about politics in Kay until March, and a full year had elapsed before the adventurous were wholeheartedly joined by a majority of the villagers, the transformation seemed complete by the spring of 1987. In Kay and surrounding villages there was either a sudden proliferation of transistor radios or a surfacing of them. Some persons, men especially, spent entire days cradling

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their radios, switching from one news program to another. Community councils, drastically overhauled in other villages, were strengthened in the area around Kay; meetings that once drew a score or so, after the summer of 1986 often drew well over a hundred people. New groups were formed and set to civic activities, such as repairing roads and planting trees. All this was worked into the daily round of gardening and marketing, but the changes stood out nonetheless.

The subject of sida, however, was only temporarily submerged. In Port-au- Prince, many knew people who had died or were ill with the syndrome. Hospitals and sanatoria were faced with large numbers of mom sida, as persons with AIDS were labeled. Haitian researchers continued to document a large and growing ep- idemic. Government health officials conceded that sida was not a public relations issue but rather a major public health problem. In the Kay area, too, sida was once again a regular topic of conversation. In the summer of 1986 questions I posed about the sickness triggered long and elaborate responses. Yet respondents expressed many discrepant ideas.

In natural discourse about sida, the number of references to blood declined. In interviews conducted late in 1986, only 11 of 19 informants used the term when speaking at length about the new sickness. Public health campaigns may have contributed to this shift. The more one heard about it on the radio, the less it seemed to resemble other well known disorders of the blood. The declining sig- nificance of the blood paradigm is suggested by a comment from a 1986 interview with Tonton Sanon, an herbalist. “I’m wondering if it is really a sickness of the blood, because we know how to put blood in its place. There’s a part of it that is in the blood, yes, but it is not only in the blood, and it’s not blood that is the principal problem. The problem is in other systems.”

He was seconded by others who spoke as if the blood paradigm had been used to assess the nature of sidu and found wanting. Interviews with other healers revealed a similar lack of accord about the new illness, although many allowed that sida was beyond their competence. “Truly it’s a sickness that is slippery (enpwenab), ” observed Mme. Victor, a midwife known for her efficacious herbal remedies. “To this day, they’re struggling with it, but they haven’t yet found an herbal treatment for it. ” A doktefey (herbalist) predicted that “the herbal remedy that will heal sidu has not yet reached us, but when it does, we’ll learn how to use it. 9 9 10

In summary, it seemed that during 1985 and 1986, when mention of sidu began to stimulate more interest, there was an effort to compare the disorder to other illnesses, especially those involving the blood. But sidu failed to fit neatly into the existing blood paradigm. Lack of a perfect fit between the new disorder and the old framework posed no real problems, as clear and defensible under- standings of sidu were not yet a necessity: no one from Do Kay had fallen ill with the syndrome.

1987: Prototypes and Protomodels

In many ways 1987 was the decisive year in the process leading to a shared understanding of AIDS. During the course of that year a protomodel of illness causation rose to prominence, a model that proved influential in the elaboration of a more stable collective representation of sidu. By the fall of that year, narra-

CHANGING CONCEPrS OF AIDS IN RURAL HAITI 13

tives about sidu were easily triggered, and it was clear that a consensus, albeit tenuous, had emerged. Interviews conducted in 1987 and afterward revealed that the semantic network in which sidu was embedded had changed substantially since 1983-84. In 1987 the syndrome was mentioned by over half of those asked to cite possible causes of diarrhea in an adult. The majority also associated sidu with tuberculosis. Furthermore, ideas about how the new disorder became man- ifest in the afflicted were more widely shared. Equally striking was the increasing frequency with which the social and political origins of illness, including sidu, were mentioned. There are perhaps two primary reasons for this: first, the un- muzzling of the rural poor led to a new rhetoric of complaint; and second and most important, the syndrome had come to matter locally. Someone in Do Kay had fallen ill with sidu.

Comparing early interviews to more recent ones revealed the increasing im- portance of the shift in styles of complaining which was triggered by the large scale political changes sketched above. Although interviewing style and methods were not altered, the narratives, whether relating a case of diarrhea or some other misfortune, became increasingly tinged with a new political sensibility. Yet “pol- iticization of discourse” is an altogether unsatisfactory description of a far more complicated process. The stories told were superficially similar to those heard earlier, but how tellers gave shape and sense to their stories had changed. For example, in speaking of misfortune, informants’ attributions of blame seemed to be changing subtly. Narrative shifts similar to those in the following interview with Mme. Jolibois abound. Mme. Jolibois, a young woman who supports her family by working a small patch of land, had traveled from the Kay area to a clinic in a nearby town in February 1984. Her infant son had had a bad case of diarrhea. When asked what had caused the diarrhea, she answered in 1984, “I don’t know what causes it. Microbes, perhaps, or gas from milk. Microbes, especially- they’re little bugs that can make children sick. Or it could be my milk. I think he must be getting too old for milk.”

In May 1987, over three years after the first interview, she again went to the clinic, a new one in Kay. This time a nine-month-old daughter had severe diar- rhea. When asked the same question, “What caused the diarrhea?” she res- ponded, “It’s the bad water we have in [my village]. We have to drink it even when it’s muddy and full of microbes. It gives the babies diarrhea, and they die, and the government does nothing about it. It’s always promises without action (promet sun buy). ”

The methodologically minded reader might ask a series of important ques- tions. Were the differences related to the severity of the episode? The sex of the child? Are contextual or performative factors important? Did the ethnographer have closer rapport with the informant years later? Perhaps Mme. Jolibois was simply in a bad or accusatory mood? Such questions were slowly revealed to be secondary, however, as I began to note similar trends in the discourse of other villagers.

The collapse of the Duvalier regime also had a palpable effect on the way in which AIDS-related accusation was marshaled and used. Conspiracy theories abounded: the Duvalier regime had caused sidu, asserted some. Others thought that no, the Duvaliers were too stupid to create a sickness, despite a talent for creating zombies. But they had allowed their nation to be used as guinea pigs in

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an American plan to stem migration. Referring to the North American suggestion that AIDS originated in Haiti, more than one villager was heard to remark, “Of course they say it’s from Haiti: whites say all bad diseases are from Haiti.”” Indeed, accusations against the accusers were perhaps the most prevalent of these commentaries.

The illness of Manno Surpris was the second reason that the same villagers who were aware of but generally uninterested in sidu in 1984 might be universally interested in the syndrome less than three years later. In 1987 sidu came to be a social drama that left few adults in Do Kay untouched.’* The impact of this change is suggested by the observations of a young schoolteacher, himself a na- tive of the village in which we worked. He was interviewed several times between 1983 and the present. In a 1984 interview he noted, “Yes, of course I’ve heard of [sida]. It’s caused by living in the city. It gives you diarrhea and can kill you. . . . We’ve never had any sidu here. It’s a city sickness.” A long exchange recorded late in 1987 clearly revealed that the man’s understanding of sida had changed substantially. He could now hold forth at great length about the disorder. A chief factor seems to have been that he was now able to refer to the death from sida of Manno Surpris, his fellow schoolteacher. “It was sidu that killed him: that’s what I’m trying to tell you. But they say it was a death sent to him. They sent a sida death to him . . . sidu is caused by a tiny microbe. But not just anybody will catch the microbe that can cause sidu.” Manno’s illness and death made a lasting contribution to the cultural model of sidu that took shape in recent years, and this contribution was not substantially lessened by the subsequent deaths from AIDS of two other villagers.

Manno moved to Do Kay in 1982, when he became a teacher at a large new school established there by a Haitian priest. He was then 25 years old. An enthu- siastic and hardworking man, Manno came to be held in high esteem by the school administrators. He was entrusted with a number of public-and remunerative- tasks, including taking care of the village’s new water pump and the community pig project, both of which were administered by the priest who ran the school. That an outsider would be granted such favors was deeply resented by some of the villagers, as became clear after Manno fell ill.

Beginning in early 1986, he had been bothered by intermittent diarrhea. Su- perficial skin infections recrudesced throughout the summer; the patches would clear up with treatment, only to appear again, usually on the scalp, neck, or face. By December, his decline was drastic, and he began to cough. In January 1987, Manno’s physician in Port-au-Prince referred him to the public clinic for the test necessary to diagnose HIV infection. In the first week of February, while awaiting the results of an HIV antibody test, Manno revealed his fears about the disorder. “Most of all, I hope it’s not tuberculosis. But I’m afraid that’s what it is. I’m coughing. I’ve lost weight. . . . I’m afraid I have tuberculosis, and that I’ll never get better, never be able to work again. . . . People don’t want to be near you if you have tuberculosis.”

Manno did indeed have tuberculosis and initially responded well to the ap- propriate treatment; by March he no longer looked ill at all. However, he also had antibodies to HIV, which suggested to his physicians that immune deficiency caused by the virus was at the root of his health problems. Although Manno’s covillagers were not privy to the results of his test, they had other reasons for

CHANGING CONCEFTS OF AIDS IN RURAL HAITI 15

believing that his tuberculosis was “not simple,” as was often remarked. A rumor circulated around Do Kay, which was not dampened by Manno’s clinical im- provement: he was the victim, it was whispered, of sorcery. Some angry orjeal- ous rival had consulted a voodoo priest in order to have a mo, or dead person, “sent” against Manno.I3 And as Mttraux (1972[ 1959]:274) observed years ago, “whoever has become the prey of one or more dead people sent against him be- gins to grow thin, spit blood and is soon dead.”

Manno’s wife was among those interviewed in 1984. She had then opined that sidu was “a form of diarrhea seen in homosexuals.” Informed in February 1987 by Manno’s physician that her husband was infected with HIV, she accepted this diagnosis as true. But Manno and she also knew that he was the victim of sorcery: “They did this to him because they were jealous that he had three jobs- teaching, the pigsty, and the water pump.” Because treatment of a “sent sick- ness” requires that the sorcerers be identified, Manno and his family were in- creasingly obsessed not with the course of the disease, but with its ultimate origin. They consulted a voodoo priest who revealed through divination the authors of the crime. One of those accused of killing Manno was his father-in-law’s brother’s daughter; another, a schoolteacher, was more distantly related to his wife. The third, the “master of the affair,” was also a teacher at the school. But divination and the indicated treatment could not save Manno. By the end of August, Man- no’s breathing had become labored. Painkillers no longer helped, and he was un- able to sleep. He vomited after most meals and had again lost a great deal of weight. Manno succumbed in mid-September, and his death was the chief topic of “semi-private” conversation for months.

Although a few villagers subsequently cast their analysis in terms of the fa- miliar dichotomy of voodoo versus Christianity, most spoke in less clear-cut terms. A series of oppositions, rather than one, came to guide many of our con- versations: an illness might be caused by a “microbe” or by sorcery or by both. An intended victim might be “powerful” or “susceptible.” For example, some spoke of the night, years ago, when Manno had been knocked out of bed by a bolt of lightning. The shock, they said, had left him susceptible to a disease caused by a microbe and “sent by someone.” An illness as serious as sidu might be treated by doctors, or voodoo priests, or herbalists, or prayer, or any combination of these.

Anita Joseph was the second villager to fall ill with sida. Anita once referred to herself as “a genuine resident of Kay,” but her name did not surface in the census of 1984. The following year, however, a study of ties to Port-au-Prince and the United States revealed that Luc Joseph had a daughter in “the city.” She was, he reported, “married to a man who works in the airport.” Less than two years later, Anita, gravely ill, was brought back to Do Kay by her father. Her husband had died some months previously, of a slow, wasting illness. Shortly after Anita’s return to Do Kay, I heard that she might have sida. The rumor was not surprising, as there was at that time a great deal of talk about Manno’s illness. Anita, it was remarked, looked the way Manno had earlier that year. Anita had been in the city, and was sidu not a city sickness?

More than one villager opined that Anita did not have sidu, she was “too innocent. ” The logic behind this statement was radically different, however, from that underpinning similar statements made in North America. “Innocence”

16 MEDICAL ANTHROWLOGY QUARTERLY

had nothing to do with such things as sexual practices (though some villagers be- lieved that Anita had led a “free life”); rather it underlined the fact that very often a string of bad luck signifies that one is the victim of maji, sorcery. Sorcery is never random; it is sent by enemies. Most people make enemies by inspiring jeal- ousy (often through inordinate accumulation) or by their own malevolent magic. Dogged by bad luck, Anita had never inspired the envy of anyone, and she was widely regarded as unwise in the ways of maji. Two persons who had earlier ex- plained the role of sorcery in Manno’s illness queried rhetorically, “Who would send a sida death on this poor unfortunate child?” Since the sole case of sida known in the Kay area was already thought to be caused by sorcery and Anita was an unlikely victim of this form of malice, it stood to reason, some thought, that Anita could not possibly have sida.

Perhaps equally important to this interpretation was the course of Anita’s illness. She did not have skin infections or other dermatologic manifestations, as had Manno. Furthermore, as Manno began his final descent, Anita was recovering her strength under a treatment regimen for tuberculosis. When Manno died, Anita was hard at work in Mirebalais. That Manno had initially shown a striking re- sponse to antituberculous medications (or some other concurrent intervention) seemed irrelevant to the widely shared assessment of Anita’s malady. To judge from the total absence of reference to Anita in interviews about sida which took place in the autumn of 1987, it was widely assumed that she was not in fact ill with the new disorder.

Six months after the initiation of the antituberculous regimen, however, An- ita declined precipitously. Her employer in Mirebalais sent her back to Do Kay. Anita had bitter words for the woman, stating that “they just use you up and when they’re finished with you, they throw you in the garbage.” She also felt that she had made an error in returning to “the same kind of work that got me sick in the first place.” By early December she could no longer walk to the Do Kay clinic; she weighed less than 90 pounds and suffered from intermittent diarrhea. Con- vinced that she was indeed taking her medications, her physicians were concerned about AIDS, especially when she recounted the story of her husband and his ill- ness.I4 Her deterioration clearly shook her father’s faith in the clinic, as well as her own, and they began spending significant sums on herbal treatments. As her father later reported, “I had already sold a small piece of land in order to buy treatments. I was spending left and right, with no results.” Since the treatment for tuberculosis was entirely free of charge, it was clear that Luc had spent his resources in the folk sector. He later informed me that he had consulted a voodoo priest but soon abandoned that tack as he came to agree that his daughter was an unlikely victim of sorcery.

By the close of 1987 Anita was widely believed to be ill with sida, and this time the label stuck. The disorder was again a frequent topic of conversation, edged out of prominence only by national politics. The election-related violence of November 1987 shocked villagers and led many to observe that “things simply can’t continue like this.” The unpleasant turn of national events was related in several ways to continued hard times for “the people.” The advent of sida was simply one manifestation of these trials. Another would be the predicted return of the big tonton makout, the members of the Duvaliers’ security forces who had fled Haiti after February 1986. Several people whispered that some of the cruelest of

CHANGING CONCE~TS OF Aim IN RURAL HAITI 17

the makout, even those rumored dead, were bringing back new weapons. One 23- year-old high school student from Do Kay informed me that one of the Duvaliers’ most notorious henchmen was returning from South America with “newly ac- quired knowledge.” In a manner revealing not his own cynicism but rather that of Duvalierism, the student continued:

They say he went [to South America] to study the science of bacteriology. He learned how to create microbes and then traveled to [North] America to study germ warfare. . . . They can now put microbes into the water of troublesome places. They can disappear all the militant young men and at the same time attract more [international] aid in order to stop the epidemic.

1988: New Disorder, Old Paradigms In Kay, an increased concern with sidu fit neatly into the almost apocalyptic

winter of 1987-88. Manno was dead, and Anita was dying. Why was it, several villagers queried, that Kay alone of the villages in the area had people sick with sidu? If the disorder was indeed novel, as most seemed to believe, why should it strike Kay first? Some cautioned that the mysterious deaths of two persons from nearby villages may not have been due to “sent” tuberculosis, as had been sus- pected: they had died, undiagnosed, from sidu. Other questions were asked in more hushed tones: were others, such as DieudonnC and Celhomme, also ill with the disorder? Was it really caused by a simple microbe, or was someone at the bottom of it all? Rumors flew. AcCphie was said to have contracted the disorder by sharing clothes with Gemajne, a kinswoman from another village in the pla- teau. A voodoo priest in a neighboring village was reported to have signed a con- tract with a North American manufacturing firm. He was to “load tear-gas gre- nades with mo sidu.” Demonstrators who found themselves in a cloud of this brand of tear gas would later fall ill with a bona tide case of sidu. One person with tuberculosis was cautioned not to cross any major paths, stand in a crossroads, or walk under a chicken roost, lest his malady “degenerate into sidu.”

At the same time I noted the parallel activities of the village representatives of community medicine. At the January 1988 meeting of the village health com- mittee, there was talk of initiating a much-needed antituberculosis project, one that would also include the task of HIV education. The community health workers from Do Kay and surrounding villages held a second conference on sidu, but these attempts at activism seemed mired in a widely shared resignation which cast the new disorder as a ruthless killer against which “doctors’ medication” could offer little comfort. The dispirited physicians seemed to feel that any assertions to the contrary were hollow ones, that there was really nothing they could do. Anita’s death in mid-February coincided with an obvious dampening of discussion about the disorder. What had once seemed a sort of struggle for preeminence between politics and sidu, with the former eclipsing the latter whenever “the thing was hot,” was now revealed to be more like a symbiotic relationship between the two. When the muzzle was off, it was off for everything; when it was applied with new force, those with the most to lose simply spoke less. Sidu was discussed less and less as villagers, increasingly cowed by “the climate of insecurity,” stopped dis- cussing national politics.

During the months following Anita’s death, there seemed to be a new con- fidence and clarity in the commentaries offered by the villagers. It was widely

18 MEDICAL ANTHROWL~CY QUARTERLY

agreed that she had died of sidu, yet her sickness was noted to be outwardly dif- ferent from that of Manno. It was almost universally accepted that sidu was a “sent sickness” (i.e., the result of sorcery), and yet few believed that Anita had been the victim of sorcery. How did the nascent representation accommodate the disparities offered by her sickness? As one of Anita’s aunts put it, “We don’t know whether or not they sent a sidu death to [her lover], but we know that she did not have a death sent to her. She had it in her blood, she caught it from him.” Her father’s lack of success in his quest for magical therapy was seen not as an indication of the power of her enemies, but of the virulence of her “natural” ill- ness. Anita’s aunt was reflecting the view of many in Do Kay who had come to understand that there are two ways in which a person may contract sidu: “You catch it by sleeping with a person with sidu. You might not see that the person is sick, but the person nonetheless has it in the blood. The other way is if someone sends a mo sidu. When Manno died he didn’t have sidu in the blood. They sent a mo sida to him, but it wasn’t in his blood.” The proof that Manno’s sidu was “not simple” was that his wife did not have the disorder. “If it was in his blood, his wife would have it, and she did not,” observed one of Anita’s aunts. “She had a test, and she did not have it.” By the end of Anita’s illness, these distinctions between causal mechanisms operating in Manno’s and her cases became more sharp and had a great influence on a rapidly evolving collective representation of sidu. In the eyes of a majority of those interviewed in early 1988, Manno’s sick- ness was sent to him by a jealous rival or a group of them. Anita had contracted sidu through sexual contact with a person with the syndrome. She was not the victim of sorcery. Indeed, this would be a very unlikely fate for Anita Joseph. As was repeated many times, Anita had lost her mother, run away at 14, and been forced into a sexual union by poverty. Several people, including Anita’s uncle, added that they were all the victims of the dam at Peligre.

DieudonnC Gracia was the third villager to fall ill with sidu, and once again many features of the case were found compatible with the nascent model. First, he had spent two years in the city. Through a relative from Do Kay, he had found a position as “yard boy” for a well-to-do family. He spent two years opening gates, fetching heavy things from the car, and tending flowers in the cool heights of one of the city’s ostentatious suburbs. Dieudonne’s subsequent illness was seen by most as the result of an argument with a rival domestic, which led him to return to Do Kay in 1985. Two informants felt that his sidu was the result of poison, an invisible “powder” laid in his path. But most villagers, including his family, came to agree that Dieudonnd’s was another “sent sickness,” a suspicion later confirmed by a voodoo priest consulted by Boss Yonel, the young man’s father.

Although Dieudonnk had visited the clinic for recurrent diarrhea and weight loss in 1986 and early 1987, his cousin, a community health worker, felt that his illness had begun in August of 1987.

His gums began to hurt him, to bleed easily. He was coughing, and he had diar- rhea that went on and on, and fever and vomiting. This was when he was first ill, when he was working in Savanette [a neighboring village]. It was on the way home from Savanette; he got to [another community health worker’s] house, and he thought it was a cold. He gave him cold medications, and I took care of him when he came home. He got better.

CHANGING CONCEPTS OF AIDS IN RURAL HAITI 19

DieudonnC did seem to improve, which may explain why his illness was not at- tributed to sent sidu until about the time of Anita’s death, when he was again coughing and complaining of shortness of breath (retoufman). By April, his night sweats led the physicians in Do Kay to suspect tuberculosis, but Boss Yonel was reluctant to believe that his son could have that disorder. Physicians from another clinic offered the same opinion.

During the last week of September 1988, Boss Yonel took his son to see Tonton Meme, a well known voodoo priest who lived in a neighboring village. Meme diagnosed sida and stated that it had been sent by “a man living in Port- au-Prince, but from somewhere else.” This was held as confirmation of the orig- inal reading of the illness. Tonton Meme explained that sidu “is both natural and supernatural, because they know how to send it, and you can also catch it from a person who already has sidu.” He spoke, too, of the protections he could offer against the sickness, of charms (gad and met) that could “protect you against any kind of sickness that a person would sent to you.”

In an interview shortly before his death, DieudonnC observed that “sida is a jealousy sickness.” When asked to explain more fully what he intended by his observation, DieudonnC replied,

What I see is that poor people catch it more easily. They say the rich get sida; I don’t see that. But what I do see is that one poor person sends it to another poor person. It’s like the army, brothers shooting brothers. The little soldier (ri solda) is really one of us, one of the people. But he is made to do the bidding of the State, and so shoots his own brother when they yell, “Fire!” Perhaps they are at last coming to understand this.

DieudonnC’s optimism was based on the September coup d‘etat, which was initially held to be the “deliverance” from the bloody and now universally de- tested regime of the most recent in a series of military governments. A wide- spread, if ill-advised, optimism was registered in Do Kay even as DieudonnC’s diarrhea and cough worsened; his open sores were compared to Manno’s derma- tologic problems. He died in October. His mother told me that she had been alerted well in advance: “A woman I know came to the clinic. . . . She was sit- ting with me and said, ‘Oh! Look how death is near you!’ (gudejun lumo u pre ou!). So I knew the week before.”

Although one dissenting opinion had it that ‘‘tuberculosis killed him because it circulated too long in his blood,” most agreed with DieudonnC’s cousin, who explained the relationship between tuberculosis and sent sidu.

Tuberculosis and sida resemble each other greatly. They say that “TB is sidu’s little brother,” because you can see them together. But if it’s a sent sidu, then it’s really [sida] that leaves you weak and susceptible to TB. You can treat it, but you’ll die nonetheless. Sida is TB’s older brother, and it’s not easy to find treatment for it.

At this writing villagers talk about sidu, although they still greatly fear it- as they do many other misfortunes. l5 Based upon statements like DieudonnC’s cousin’s, cited above, and also on more structured interviews, the following points summarize the shared understanding of AIDS in a Haitian village in 1989:

(1) Sida is a “new disease.”

20 MEDICAL ANTHROFQLOGY QUARTERLY

(2) Sida is strongly associated with “skin infections,” “drying up,” “diar- rhea,” and especially “tuberculosis.” (3) Sida may occur both “naturally” (maladi bondje, “God’s illness”) and “un- naturally.” Natural sida is caused by sexual contact with someone who “carries the germ.” Unnatural sida is “sent” by someone who willfully inflicts death upon the afflicted. The mechanism of malice is through expedition of a “dead [person],” in the same manner that tuberculosis may be sent. (4) Whether “God’s illness” or “sent,” sida may be held to be caused by a “microbe. ” (5 ) Sida may be transmitted by contact with contaminated or “dirty” blood, but earlier associations with homosexuality and transfusion are rarely cited. (7) The term sida reverberates with associations, drawn from the larger political economic context, of North American imperialism, a lack of class solidarity among the poor, and the corruption of the ruling elite.

For many living in Do Kay there exist two related but distinguishable enti- ties-“sida the infectious disease” and “sida caused by magic.” One may take preventive measures against each. Condoms are helpful against the former, use- less against the latter. Certain charms (gad and arer) are widely believed to offer some protection against sida-caused-by-magic, and there is uncertainty as to whether or not they will work in the event of exposure to sida-the-infectious-dis- ease.

Whether or not this uncertainty is supplanted by consensus remains to be seen, but the rapid rate of change in local understandings of sida would seem to be a thing of the past. Although the current meanings will be contested and will change, the above points summarize a cultural model, in that high interinformant agreement regarding the nature of the illness has evolved. And although there is significant “surface variation” in models that may be elicited from individuals, even these discrepant versions seem to be generated by a schema comprising the above points (see Garro 1988). In the absence of dramatic group experience, col- lective accord tends to be more stable and to shift more slowly than individual models, which are often more vulnerable to disputation and subject to rapid re- vision.

Discussion

Tracing the emergence of sida as a collective representation illuminates our understanding of AIDS in rural Haiti. Recall that in 1984, when sida was a “city sickness,” the most frequent comments about it concerned the novelty of the dis- order, its relation to diarrhea, and its association with homosexuality. The ab- sence of illness stories regarding the malady call into question the very notion of a cultural model of sida at that time. As of October 1988, however, there were many stones to tell. Manno’s remained the prototypical case, the standard against which other illnesses could be judged. When two other villagers succumbed to sida, their illnesses, though quite different in several ways from Manno’s, con- firmed many of the tentatively held understandings that were elaborated in 1987.

While many of the ideas and associations were indeed new, it became clear that the term sida and the syndrome with which it is associated came to be embed- ded in a series of distinctly Haitian ideas about illness. This “adoption” of a new illness category into an older interpretive framework is well documented. “As

CHANGING CONCEPTS OF AIDS IN RURAL HAITI 21

new medical terms become known in a society, they find their way into existing semantic networks. Thus while new explanatory models may be introduced, it is clear that changes in medical rationality seldom follow quickly” (Good 197754). The causal language used in reference to sida is in many respects similar to that employed when speaking of tuberculosis. For example, the new illness became linked to other diseases that can be caused by malign magic. Just as it is possible to “send a chest death” (voye yon mopwatrine), so, too, is it possible to send an AIDS death to someone. The relation of these ideas to voodoo is unclear. Cer- tainly, some of my informants readily ascribed both the ideas and the practice of sorcery to the realm of voodoo. But most of those interviewed made no such Man- ichean distinctions. Instead of adherence to a neatly defined “belief system,” we found almost universal acceptance of the possibility of “sending sickness. ” This was as true of virulently antivoodoo Protestants as it was of regulars of Tonton Meme ’ s temple.

The scholarly literature on voodoo documents this form of illness causation. Metraux refers to the “sending of the dead” as “the most fearful practice in the black arts, ” and describes Haitian understandings of expkdition:

Whoever has become the prey of one or more dead people sent against him be- gins to grow thin, spit blood and is soon dead. The laying on of this spell is always attended by fatal results unless it is diagnosed in time and a capable hun- gan succeeds in making the dead let go. [Mttraux 1972:274]

In Haiti, a fatal disease that causes one to “grow thin, spit blood” is tuber- culosis until proven otherwise. Once referred to as “little house illness,” in ref- erence to the tuberculous person’s separate sleeping quarters, tuberculosis re- mains a leading cause of death among adults and is still greatly feared. Although some say that virtually any death can be sent, the people of Kay and surrounding villages agree that a mo pwatrine (a tuberculous death) is the most commonly “expedited.” In research concerning tuberculosis that was conducted before the advent of AIDS, a few informants asserted that only a mo pwatrine can be sent. These same informants, when interviewed in 1988, all agreed that now there was a new “expeditable” death to be feared.

These two major causal schemes, magic and germ theory, are elaborately intertwined and subject to revision. For example, one person who was widely believed to have been the victim of a mopwatrine was considered to have “simple TB” after antituberculous therapy led to her dramatic recovery. As another person with tuberculosis put it, “If they had sent a mopwutrine to me, your medicines wouldn’t be able to touch it.” For sidu, conversely, the sent version is held by some to be the less virulent form of the disease, since at least magical intervention is possible. The “natural” form is universally fatal.

The term sidu has also become a prominent part of everyday discourse about misfortune. It has been the topic of several nationally popular songs, all of which tend to affirm associations that are important to the Haitian cultural model of AIDS. This discourse reveals the semantic network in which the term sida is embedded, a network that has come to include such diverse associations as the endless suffering of the Haitian people, divine punishment, the corruption of the ruling class, and the ills of North American imperialism. These shifts in the rhet- oric of complaint were brought into relief during the political turmoil that sur-

22 MEDICAL ANTHROPOLOGY QUARTERLY

rounded the collapse of the Duvalier dictatorship. For example, when the military government organized a carefully policed forum on the mechanics of army-run elections, the gathering was widely termed a “forum sida,” a play on the official term “forum CEDHA,” the acronym designating the army’s proposed electoral machinery. The significance of “conspiracy theories ,” especially those linking AIDS to the machinations of racist “America,” has yet to decline. Although such expressions emanated from Port-au-hnce, it is possible that they have had a greater effect on the elaboration of rural illness realities than has the virus itself. Many areas of rural Haiti have to date registered no local cases of sidu; recent travel in northern and southern Haiti suggests to me that inhabitants of these re- gions are nonetheless familiar with many of these expressions.

As an illness caused by sorcery, sidu stands for local, rather than large-scale, dissatisfaction. Several villagers referred to sidu as a “jealousy sickness,” an ill- ness visited on one poor person by another, even poorer person. As such, the disorder has come to connote an inability of poor Haitians to develop enduring class solidarity. Such observations often served as codas in the illness stories re- counted in Do Kay, as when Dieudonnt concluded a conversation with a deep sigh and the prediction that “Haiti will never change as long as poor people keep sending sickness on other poor people.” These associations are also important in other parts of Haiti. The most recent pre-lenten carnival was marred by a wide- spread rumor of a group of people who planned to spread sidu by injecting revelers with HIV-infected serum. Some urban Haitians were heard to observe that these plans were to be implemented by “poor people hurting their own brothers and sisters.”

It is possible to delineate several factors important to the crafting of this ill- ness representation. Most important, of course, has been the advent of the illness itself, with the suffering and pain it has introduced into the lives of particular individuals and their families. Sidu’s debut in Do Kay prompted its residents to care about AIDS, to need urgently a means of talking about the new affliction among one another. Thereafter, Manno’s illness served as a prototypical case, so that the presentation and course of subsequent cases, though much different, did not quickly alter ideas about the etiology, symptomatology, and experience of sidu .

When Manno’s affliction made sidu come to matter to the people of Do Kay, what were the “organizing principles” that they used to make sense of a new kind of suffering? The flurry of information that followed the arrival of AIDS in Haiti was important. Billboards, posters, and T-shirts all proclaimed AIDS to be a men- ace, but it was the radio that assured a largely nonliterate population a certain exposure to biomedical understandings of the syndrome, shaping at least the con- tours of a cultural model of AIDS. Although the radio did not immediately stim- ulate strong interest in the disease in rural Haiti, it seems to have provided a vague grid-associations with homosexuality, blood transfusions, “America”-upon which genuinely interested villagers would later evaluate their covillagers’ ill- nesses. In this respect the efforts of a local clinic to disseminate information about AIDS in church, community council meetings, and at conferences for health workers, injectionists, and midwives supplemented the national media.

These sources of information seem far less significant, however, than the preexisting meaning structures into which sida so neatly fit. The blood paradigm,

CHANGING CONCEPTS OF AIDS IN RURAL HAITI 23

which posits causal links between the social field and alterations in the quality, consistency, and nature of blood, was invoked early on, before the virulence of sida became clear. Disorders of the blood are all considered dangerous and require intervention, but they are rarely refractory to treatment, unlike the new disorder. Sida also recalled tuberculosis in many ways. All three of the villagers who fell ill with sida eventually developed active tuberculosis. In addition, the new dis- order is far more serious than “bad blood” and evokes significant fear. It is not only disfiguring but also chronic, sapping the body’s strength over months or years. Given certain similarities in presentation, it is not surprising that the tu- berculosis paradigm has been invoked in reference to sida. This longstanding con- ceptual framework includes elaborate understandings of causality, most notably through sorcery, divination, and treatment. Finally, the microbe paradigm, which has the official blessing of the local representatives of cosmopolitan medicine, has long endured alongside the other explanatory frameworks. It is widely accepted, with provisos, in rural Haiti.

These three frameworks-in which are embedded understandings of blood, tuberculosis, and microbes have been worked into a “master paradigm” that links sickness to moral concerns and social relations. Writing of North America, Taus- sig (1980:7) has observed that “behind every reified disease theory in our society lurks an organizing realm of moral concerns.” This is no less true in the Kay area, where sida has come to represent a “Jealousy sickness” and a disease of the poor-victims’ moral readings of the sources of their suffering.

AIDS and the Study of Illness Representations

Medical anthropology has by and large followed its parent discipline in studying illness representations in cultural, political, and historical contexts. When the illness under consideration is a new one, it is clear that our ethnography must be not only alive to the importance of change but also accountable to history and political economy (Moore 1987). AIDS, an illness that “moves along the fault lines of society,” demands nothing less.16 Such a mandate is no license to give short shrift to the lived experience of the afflicted, however. Indeed, by at- tending closely to the understandings of the ill and their families, we are led to precisely this conclusion. I think of the words of Manno, who said of his disorder, “They tell me there’s no cure. But I’m not sure of that. If you can find a cause, you can find a cure.” Manno’s search for a cause was the search for the enemies who had ensorcelled him, and that search was guided by an assessment of his relations with those around him. Who was jealous of his relative success in the village? Anita, even younger than Manno and a native of Kay, was not a victim of sorcery. In contrast to the etiologic theories advanced by Manno and his family, Anita felt that she had “caught it from a man in the city.” The rest of her analysis was much more sociological, however, as she added that the reason she had a lover at a young age was “because I had no mother.” She continued, “When she died, it was bad. My father was just sitting there. And when I saw how poor I was, and how hungry, and saw that it would never get any better, I had to go to the city. Back then I was so skinny. I was saving my life, I thought, by getting out of here. ” Anita was equally insistent regarding the cause of her family’s pov- erty. “My parents lost their land to the water,” she said, “and that is what makes

24 MED~CAL ANTHROFQLOGY QUARTERLY

us poor.” If there had been no dam, insisted Anita, her mother would not have sickened and died; if her mother had lived, Anita would never have gone to the city; had she not gone to Port-au-Prince, she would not have “caught it from a man in the city.”

Neither the dam nor the AIDS epidemic would have been as they are if Haiti had not been caught up in a network of relations that are political and economic, as well as sexual. ” Dieudonnt underlined this point on several occasions. Like Manno, he was a victim of sorcery, but like Anita, he tended to cast things in sociological terms. DieudonnC voiced what have been termed ‘‘conspiracy theo- ries” regarding the origins of AIDS. On more than one occasion he wondered whether sidu might not have been “sent to Haiti by the United States. That’s why they were so quick to say that Haitians gave [the world] sida.” When asked why the United States would wish such a pestilence on Haitians, Dieudonnt had a ready answer: “They say there are too many Haitians over there now. They needed us to work for them, but now there are too many over there.” A history of Haiti’s entanglement in this international network should inform any under- standing of sidu as “sent sickness.” The spread of HIV across national borders seems to have taken place within our lifetimes, but the conditions favoring the rapid, international spread of a predominantly sexually transmitted disorder were established long ago and further heighten the need to historicize any understand- ing of this pandemic.

NOTES Acknowledgments. I am grateful for the advice and intellectual steering of Byron

Good, Arthur Kleinman, and Haun Saussy. Formal acknowledgment is due the MacArthur Foundation; less formal, more affectionate thanks to Fritz and Yolande Lafontant, who encouraged me when scholarly questions somehow seemed unimportant, and also to Jean Francois and Lemeus Joseph, who worked with me in Haiti.

Correspondence may be sent to the author at the Department of Anthropology, Wil- liam James Hall, Harvard University, Cambridge, MA 02138.

‘Several of the concepts in this artic1e-e.g.. cultural model, prototypical model, se- mantic network, social construction-have been used in different ways in medical anthro- pology. The present study has been informed by the critique of an “empiricist theory of language,” which has been offered by interpretive paradigms (e.g., Good and Good 1982). and also by work in cognitive anthropology, which has begun shifting its attention from the formal properties of illness models to their relation to natural discourse and thus to context and performance characteristics of illness representations (see, for example, Price 1987). A focus on lived experience is crucial to this view, even in a study of the emergence of a collective representation. (For a recent, forceful statement of such a position, see Kleinman and Kleinman 1989.) Headway will now be made by merging these groups of concerns. One important “bridge concept” might be the cultural model, an idea formalized by cognitive anthropologists seeking to show how “cultural models frame experience, sup- plying interpretations of that experience and inferences about it, and goals for action” (Quinn and Holland 1987:6).

*The processual ethnography of changing understandings of AIDS in Do Kay is based on a large corpus of interviews, the vast majority of which are not cited here. As they all inform my understanding of the significance of the comments that are cited, it is necessary to detail here the methodology of the larger project, which was initiated in 1983. At least once during each of the subsequent six years, the same 20 villagers were interviewed re- garding tuberculosis and AIDS. The majority of these conversations were tape. recorded.

CHANGING CONCEITS OF AIDS IN RURAL HAITI 25

During three of those years, a third disorder (move son) was also discussed. Of the 20 adults, two have died, and one has left Do Kay. In 1988 it was impossible for me to inter- view seven of the informants myself, but a research assistant was able to speak with them regarding tuberculosis and AIDS. All other taped exchanges were initiated by me and took place in a variety of settings, most often in the informants’ houses. The interviews were open-ended and most often focused on specific “illness stories,” always including discus- sion of the following topics regarding each of the three illnesses: key features (including typical presentation, causes, course, understandings of pathogenesis when relevant), ap- propriate therapeutic interventions, relation to other sicknesses common in the area, and questions of risk and vulnerability. In addition to these interviews, the research involved lengthy conversations with all villagers afflicted with tuberculosis and AIDS, and the ma- jority of those with move sun. Members of victims’ families were also interviewed, as were other key actors in the events described here. These qualitative data were complemented by information from several structured surveys and an annual census, which were con- ducted by myself and other members of “ h j e Veye Sante,” a locally directed public health initiative based in Do Kay. Since May 1983, I have spent an average of six months per year in Do Kay and have therefore witnessed the changes described here.

3The French acronym is commonly rendered as S.I.D.A., SIDA, or Sida; sida is the Creole orthography. I have adopted the latter here in order to reflect the substantial differ- ence between the terms as used in different national and cultural settings.

4The anti-Haitian backlash may have been felt as keenly in New York, Miami, Bos- ton, Montreal, and other North American cities in which large numbers of Haitians now reside. See Farmer (1990) and Sabatier (1988) for a review of AIDS-related discrimination against Haitians.

5Three of the five who had never heard the term were men who “never traveled to Port-au-Prince.” Such homebodies are rare in the central plateau, the inhabitants of which are highly involved in the marketing of produce.

61n Haiti market women are known for their up-to-date information. Their “frequent trips to neighboring cities and to Port-au-Prince make [them] aware of everything-not just the rise and fall of prices, but also national events, not only the genuine ones, but the false rumors that spread through the marketplaces” (Bastien 1985[ 1951]:128).

’It should be noted, however, that Ti Malou was widely believed to have move sun, a common disorder that is treated by herbal medications and not transfusion (Farmer 1988). Some observed that when one is ill with move sun, any intravenous solution can be dan- gerous.

8Ferguson (1987) documents the role of duvalitriste Luckner Cambronne in a trade in Haitian blood, which was used for medical experiments and for its antibody-rich serum.

’See Gaines and Farmer (1986) for a discussion of rhetorics of complaint and their relevance to illness representations. It has long been noted that Haitians have complicated, multifactorial ideas about illness causation. A large body of ethnographic literature shows that rural Haitians often entertain explanatory frameworks that make room for “natural- istic” causation, as well as lines of causality dominated by human agency. Particularly relevant is Cored’s (1980) study of an anthrax epidemic in rural Haiti.

‘OFor discussion of health care practitioners in rural Haiti, see Coreil(l983) and La- guerre (1987).

”As Sabatier notes, “Syphilis was referred to by the Spanish as ‘the sickness of His- paniola,’ believing it to have come from what is now Haiti when Columbus returned from his voyage to the Americas” (1988:42).

‘*The advent of AIDS to this village is more fully described in Farmer (1990). I3The term “expedition” is also used to describe this process, which requires the ser-

vices of an houngun, or voodoo priest. In translating the term voye yon mo sida, I have used the less accurate “send a sida death” rather than the more cumbersome “send a dead person who has died from sida.”

26 MED~CAL ANTHROPOLOGY QUARTERLY

I4This story has been told more fully in Farmer and Kleinman (1989). I5Things do not appear to have changed altogether. Ethnographic research conducted

decades ago led MCtraux (19721269) to observe that “in everyday life the threat of charms, sorcery and spells makes it but one more care to be listed with drought and the price of coffee and bananas. Magic is at least an evil against which man is not entirely powerless.” Hurbon (1987:260) offers a similar insight when he notes that “spells are part of the daily struggle in a world already littered with traps.”

‘This expression is borrowed from Bateson and Goldsby (1988). A similar image has been used by Lindenbaum (1979: 146) in her classic study of sorcery and the advent of kuru, another novel infectious disease, in rural Papua New Guinea: “A geography of fear tracks unequal relations.”

”That political economic conditions have been important in the lineaments of the AIDS epidemic in the Americas is suggested by comparing Haiti with its neighboring is- land of Cuba. In 1986 only 0.018 of 1 ,OOO,OOO persons tested in Cuba were found to have antibodies to HIV (Liautaud, Pape. and Pamphile 1988:690). Had the pandemic begun a few decades earlier, the epidemiology of HIV infection in the Caribbean might well be different. Havana might have been as much an epicenter of the pandemic as Carrefour, the nexus of Haitian domestic and international prostitution.

REFERENCES CITED

Abbott, Elizabeth 1988 Haiti: The Duvaliers and Their Legacy. New York: MacGraw-Hill.

Bastien, Rtmy 1985[ 19511 Le paysan haitien et sa famille: Vallte de Marbial. Paris: Karthala.

Bateson, Mary Catherine, and Richard Goldsby 1988 Thinking AIDS: The Social Response to the Biological Threat. Reading, MA:

Addison-Wesley . Centers for Disease Control

1982 Opportunistic Infections and Kaposi’s Sarcoma among Haitians in the United States. Morbidity and Mortality Weekly Report 31:353-354, 360-361.

Coreil, Jeannine 1980

1983

Traditional and Western Responses to an Anthrax Epidemic in Rural Haiti. Med-

Parallel Structures in Professional Folk Health Care: A Model Applied to Rural ical Anthropology 4:79- 105.

Haiti. Culture, Medicine and Psychiatry 7:131-151. Fanner, Paul

1988 Bad Blood, Spoiled Milk: Bodily Fluids as Moral Barometers in Rural Haiti. American Ethnologist IS( 1):62-83.

1990 AIDS and Accusation: Haiti, Haitians, and the Geography of Blame. In Cultural Aspects of AIDS: The Human Factor. Douglas Feldman, ed. New York: Praeger. (In press. )

Farmer, Paul, and Arthur Kleinman

Ferguson, James

Gaines, Atwood, and Paul Farmer

1989 AIDS as Human Suffering. Daedalus 118(2):135-160.

1987 Papa Doc, Baby Doc: Haiti and the Duvaliers. Oxford: Basil Blackwell.

1986 Visible Saints: Social Cynosures and Dysphoria in the Mediterranean Tradition. Culture, Medicine and Psychiatry 11:295-330.

Garro, Linda 1988 Explaining High Blood Pressure: Variation in Knowledge About Knowledge.

American Ethnologist 15( 1):98-119.

CHANGING CONCEPTS OF AIDS IN RURAL HAITI 27

Good, Byron 1977 The Heart of What’s the Matter: The Semantics of Illness in Iran. Culture, Med-

icine and Psychiatry I( 1):25-58. Good, Byron and Mary40 DelVecchio Good

1982 Toward a Meaning-Centered Analysis of Popular Illness Categories: “Fright Ill- ness” and “Heart Distress” in Iran. In Cultural Conceptions of Mental Health and Therapy. Anthony J. Marsella and Geoffrey M. White, eds. Pp. 141-166. Boston: Reidel.

Hurbon, Laennec

Kleinman, Arthur, and Joan Kleinman 1987 Le barbare imaginaire. Port-au-Prince: Editions Henn Deschamps.

1989 Suffering and its Professional Transformation: Toward an Ethnography of Ex- perience. Paper presented at the First Conference of the Society for Psychological Anthropology, San Diego, CA, October 6-8, 1989.

Laguem, Michel

Liautaud, B., J. Pape, and M. Pamphile 1987 Afro-Caribbean Folk Medicine. Granby, MA: Bergin and Garvey.

1988 Le sida dans les Caraihs. MCdecine et Maladies Infectieuses Wembre : 687- 697.

Lindenbaum, Shirley

Mayfield. MCtraux, Alfred

1972[1959] Haitian Voodoo. Hugo Charteris, trans]. New York: Schocken. Moore, Sally F.

1987 Explaining the Present: Theoretical Dilemmas in Processual Ethnography.

1979 Kuru Sorcery: Disease and Danger in the New Guinea Highlands. Palo Alto, CA:

American Ethnologist 14(4): 123- 132. Nachman, Steven, and Ginette Dreyfuss

1986 Haitians and AIDS in South Florida. Medical Anthropology Quarterly 17(2):32- 33.

1988 Epidemiology of AIDS in the Caribbean. Bailliere’s Clinical Tropical Medicine Pape, Jean, and Warren Johnson

and Communicable Diseases 3( 1):31-42. Price, Laurie

1987 Ecuadorian Illness Stones: Cultural Knowledge in Natural Discourse. In Cultural Models in Language and Thought. Dorothy Holland and Naomi Quinn, eds. Pp. 313- 342. Cambridge: Cambridge University Press.

Quinn, Naomi, and Dorothy Holland 1987 Culture and Cognition. In Cultural Models in Language and Thought. Dorothy

Holland and Naomi Quinn, eds. Pp. 3-40. Cambridge: Cambridge University Press.

1988 Blaming Others: Prejudice, Race, and Worldwide AIDS. Philadelphia: New So- Sabatier, Rent%

ciety Publishers. Taussig, Michael

1980 Reification and the Consciousness of the Patient. Social Science and Medicine 148~3- 13.

Weidman, Hazel 1978 Miami Health Ecology Project Report: A Statement on Ethnicity and Health.

Miami: University of Miami.

,

Culture and Infectious Diseases GLBH/ANSC 148. Class 8

Farmer: “Sending Sickness”

• “Before the arrival of the new malady there exists no collective representation of the disorder; then comes a period of exposure, if not to the illness, then to rumor of it. With time and experience, low inter-informant agreement may give way to a cultural model shared by the majority of a community.”

Farmer, p. 6

PROCESUAL ETHNOGRAPHY OF THE ADVENT OF AIDS IN DO KAY, HAITI

PERSPECTIVES ON HIV / AIDS

• https://www.youtube.com/watch?v=2X0o_w8YyGo

Farmer: “Sending Sickness” Understanding of HIV/AIDS in Do Kay, Haiti

• (Political Conflict) Duvalier dictatorship unravels, political movements dominate consciousness. Political context shapes understanding of AIDS: seen as a “sent sickness” part of an American plan to enslave Haiti.

• (Fall of Dictatorship) AIDS more openly discussed, civic organization to deal with cases. Increasing cases undermined blood paradigm.

• (Growing Epidemic) Clearer connections to pathogens as cause emerge, disease affecting everyone, yet mysterious forces such as sorcery can direct infection

• (Synthesis) Both pathogens and magic can cause AIDS • (Synthesis) Poverty and social position dictates which cause is attributed

Farmer: “Sending Sickness”

• Both real vulnerability to HIV/AIDS and the cultural understandings of it are related to pre-existing social, economic, and political conditions

• Conspiracy theories about origins of sickness is tied to political struggles and social inequality. Had persistent force in Haitian understanding of AIDS (same in South Africa)

• Interpersonal distrust and lack of social solidarity feeds accusations of sorcery and an understanding of AIDS as a “jealousy sickness”

• As reality of disease hit Do Kay, biomedical understandings of AIDS gained greater foothold, and came to exist alongside alternative cultural explanations

• This co-existence build upon prior experience with TB, political instability, and existing social and moral distinctions present in Haitian society

SHARED UNDERSTANDING OF AIDS IN A HAITIAN VILLAGE IN 1989

• SIDA is a new disease • Sida is strongly associated with skin infectious, drying up,

diarrhea, and especially tuberculosis. • Sida may occur both naturally and unnaturally. • Wheter God’s illness or sent, sida may be held to be caused by a

microbe. • Sida may be transmited by contact with contaminated or dirty

blood, but earlier associations with homosexuality and transfusion are rarely cited.

• The term sida reverberates with associations, drawn from the larger political economic context, of North American imperialism, a lack of class solidarity among the poor, and the corruption of the ruling elite.

Pandemics Follow Fault-lines of Society

• Inequality determines who is most vulnerable to infection and death

• Effort to mitigate the effect of an epidemic needs to engage with the social, political, and cultural complexity of the societies in which they strike

• We can see this in the global effort to address the AIDS epidemic

Inequality and Epidemics (Kim and Farmer (RMA 25)

• HIV effort to distribute ARV’s globally • Paul Farmer argues that only the public sector can

guarantee health as a human right – NGO’s can’t do this on their own

• But in the absence of public sector action, NGO’s can step in and act

• Directly distribute medications • Pressure states to negotiate with industry to provide

discounts • Pressure states to allow generic manufacturing of

medications.

Inequality and Epidemics. Kim and Farmer (RMA 25)

• Deep poverty is the number one obstacle to accessing medical care, including the ability to effectively follow complicated ARV Regimes (and access vaccination facilities for Covid, for that matter)

• We can’t use this as an excuse, however, and just throw up our hands like there is nothing we can do about it

• Farmer calls for hiring large numbers of community health workers to help facilitate life saving interventions

HIV STIGMA

• https://www.youtube.com/watch?v=G_HMVZpSXIg

Culture and Health Intervention

• Novel infectious disease threats require community support in order to adopt mitigation tactics

• Behavior Change

• Medication Adherence

• Vaccine Uptake

• Medical Anthropologist use their ethnographic techniques to explore community understandings of disease and potential resistance to mitigation

• Kim and Farmer (RMA 25): Collaborate with community members and address poverty directly as part of intervention

Anthropologically Informed Health Interventions: Culture + Equity

Interventions should:

• Value local perspectives on illness and disease • Work in collaboration with community members in

developing interventions (hire them, pay them) • Overcome barriers to success by including “wrap-

around services” such as:

• Food supplements for the hungry • Help with transportation to clinics, childcare,

and housing

• Be seen as promoting the “public good”

Connecting Pandemics • There are obvious parallels between the structures

of vulnerability and cultural variation in understanding in both the HIV/AIDS case and the Coronavirus Pandemic

Connecting Pandemics

• What happened with Covid? What has been done to improve equity?

• Coordinated effort to share resources where they are needed most (forms of rationing and planning and preparation of equipment and therapeutics)

• Efforts to provide outreach to vulnerable populations that might be hard to vaccinate (how was this done?)

• Covid struggle to distribute vaccines equitably in the US and internationally

• What have we done to ensure vaccine distribution to the rest of the world?

• What should we be doing differently?

Connecting Pandemics • How can the Haitian experience with HIV help us understand the contemporary

variation in the understanding of COVID-19?

• What factors might have led to a divergence in beliefs, with some perceiving the virus as a significant threat and others not?

• Why did some people support efforts to mitigate the spread of the virus, but others didn’t?

• What social, cultural, or other factors shaped how COVID-19 is understood in the United States?

• Is it possible to foster a unified understanding of Covid19 in the US, given the diverse perspectives and interpretations?

• What role do social class and racial/ethnic inequality play?