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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”

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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?

Sarah S. Willen Department of Anthropology University of Connecticut

Do “Illegal” Im/migrants Have a Right to Health? Engaging Ethical Theory as Social Practice at a Tel Aviv Open Clinic

As the notion of a “right to health” gains influence, it is increasingly deployed in ways that are diverse, contextually variable, and at times logically inconsistent. Drawing on extended fieldwork at an Israeli human rights organization that ad- vocates for “illegal” migrants and other vulnerable groups, this article contends that medical anthropologists cannot simply rally behind this right. Instead, we must take it as an object of ethnographic analysis and explore how it is invoked, de- bated, and resisted in specific contexts. Critical ethnographies of right to health discourse and practice can enlighten us, and help us enlighten scholars in other fields, to the complexity, messiness, and “mushiness” (Sen 2009) of this right, espe- cially in the context of advocacy on unauthorized im/migrants’ behalf. It can also deepen understanding of the complicated and sometimes tense relationships among human rights, humanitarianism, and other contemporary idioms of social justice mobilization, especially in the health domain. [right to health, migrant “illegality,” im/migrant health, human rights, idioms of social justice mobilization]

In seeing health as a right, we acknowledge the need for a strong social commitment to good health. There are few things as important as that in the contemporary world.

—Amartya Sen, 2008

In the context of Western democracies, health today appears to be endorsed as a kind of meta-value, and speaking in the name of health is one of the most powerful rhetorical devices. The discourse of human rights reflects the fundamental value ascribed to health, by addressing health itself as a kind of meta-right. At the same time, at a national level the notion of a “right to health” appears now more controversial and problematic than ever.

—Monica Greco, 2004

Vulnerable Migrants Have a Right to Health

—Editorial headline, Lancet, 2007

MEDICAL ANTHROPOLOGY QUARTERLY, Vol. 25, Issue 3, pp. 303–330, ISSN 0745- 5194, online ISSN 1548-1387. C© 2011 by the American Anthropological Association. All rights reserved. DOI: 10.1111/j.1548-1387.2011.01163.x

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304 Medical Anthropology Quarterly

As the 5:00 P.M. hour drew near, a multinational, polyglot crowd gathered on the stoop outside the narrow storefront housing the volunteer-run Open Clinic for Migrant Workers in south Tel Aviv. The clinic, run by the Israeli human rights orga- nization Briut ve’Zh.uyot Adam (BZA; Hebrew for “Health and Human Rights”),1

is the only primary health care institution consistently open and accessible to the estimated 150,000 unauthorized transnational migrant workers who began settling in Israel in the latter half of the 1990s. Located on an otherwise sleepy block in the heart of the city’s, and country’s, largest migrant enclave, the tiny storefront was readily identifiable from afar by its green-lettered sign in Hebrew, English, and Arabic and by the array of world flags affixed to its floor-to-ceiling streetfront windows.

By the time the director removed the heavy steel padlock from the front door and invited patients to be seated in the row of white plastic patio chairs lining the improvised waiting room, the front stoop was crowded with people hoping for a chance to see a doctor. Given the high patient volume, the unwieldy doctor– patient ratio, and each evening’s scant four hours of clinic time, patients’ waits were inevitably long, and latecomers were sometimes turned away. Each day, an unpredictably diverse assortment of patients came to the clinic with an equally varied array of health concerns. On this particular Sunday, for instance, the list included regulars like Frederick, a chatty, middle-aged Nigerian man who had stopped in for his periodic blood pressure check, along with new patients like Norma, a middle- aged Filipina woman with a stubborn rash on her arm; Constantin, a Romanian man whose girlfriend needed a gynecology appointment; and Linda, a disgruntled young South African mother who, the clinic director told me in a whisper, the doctor suspected might be HIV positive, as might her one-month-old, Israeli-born baby.

For the clinic’s patients, marginalization, “illegalization,” and criminalization are no mere abstractions. Whereas Israeli migrant advocates and activists iden- tify people like Frederick, Norma, Constantin, and Linda in descriptive terms as “unauthorized labor migrants” (mehagrei avoda le’lo ashra), in vernacular discourse they often are labeled disparagingly as “illegal foreign workers” (ovdim zarim lo khuki’im)—a term with powerful negative associations. Linked semantically to the biblical term for idol worship (avodah zara), the Hebrew term for “foreign worker” (oved zar) foregrounds these im/migrants’ Otherness, and it ascribes social value only to the labors of their “working hands” while diminishing, or even denying their humanity. At the same time, it also ignores the crucial fact that the condition of migrant “illegality” is nothing natural or self-evident, but, rather, a complex, ide- ologically charged social construction.2 For these uninvited residents, and for their counterparts in other migration settings, the forms of discursive, social, and biopo- litical exclusion that accompany migrant “illegality” often translate into adverse living and work conditions, poverty, the perpetual threat of arrest and deportation, chronic stress, and other factors that interact syndemically (Singer 2009) to heighten vulnerability to illness and injury and to increase their likelihood of abandonment by prevailing systems of public health and clinical care. Undergirding these em- bodied forms of “bio-inequality” is a fundamental denial of what Fassin (2009) calls “biolegitimacy.” Put bluntly, neither the state nor society finds unauthorized im/migrants’ health, or their lives, particularly deserving of attention or concern (cf. Willen forthcoming-a, 2010b).

Ethical Theory as Social Practice at a Tel Aviv Open Clinic 305

Despite Israel’s nationalized health care system, world-class systems of medical education and care, and proud position on the global cutting edge of medical tech- nology, when people like Frederick, Norma, Constantin, and Linda have health needs, they have virtually nowhere to go but the tiny, resource-strapped BZA Open Clinic. Since its establishment in 1998, this small, makeshift health center has accu- mulated well over 50,000 patient files, undergone multiple changes in professional leadership, and relocated several times. In material terms, it has little to offer its patients other than a small stock of donated medications, a few pieces of donated medical equipment (an ultrasound, an EKG), and a seemingly boundless supply of volunteer energy. With these meager resources, as I observed during my years as a volunteer receptionist and participant-observer (2000–03) and briefer return visits (2005, 2007, 2008, 2010), the clinic’s director and volunteer team struggled daily to help patients with health problems ranging from childhood illnesses and common colds to work injuries, chronic diseases like heart disease and cancer, and infectious killers like tuberculosis, hepatitis, and HIV. What leads BZA activists to recognize and respond to the suffering of people whom the Israeli state and society seem com- fortably to ignore? As I argue in this article, what unites BZA’s activists, including both their professional staff and their large team of volunteers, is a fundamental rejection of political discourses and government policies that deny unauthorized im/migrants’ biolegitimacy—that is, that categorically exclude im/migrants from the broader moral community. Significantly, however, it would not be accurate to say that all activists at BZA, which explicitly self-identifies as a human rights orga- nization, are equally committed to the proposition that “illegal” im/migrants have a right to health. A close ethnographic look at BZA reveals that this beguilingly simple assertion is actually a matter of considerable epistemological, ethical, and practical confusion and debate.

Although the anthropology of human rights has grown by leaps and bounds in the past 15 years, the notion of a human right to health—for unauthorized im/migrants or anyone else—has yet to become a robust object of anthropological study. Perhaps this paucity of attention should come as no surprise, for as recently as 1994 it was possible to say that, “The phrase ‘right to health’ is not a familiar one” (Leary 1994:24). Since these words were published (notably, in the inaugural issue of the now well-established journal Health and Human Rights), the right to health has become a prominent concern in myriad fields of scholarship including legal studies,3 bioethics,4 public health,5 clinical medicine,6 and medical anthropology.7

Beyond the academy, it has also become a crucial rallying point for communities of advocacy, activism, and practice. In these pages, I refract this burgeoning discussion about the nature, content, and implications of the right to health through the lens of my long-term fieldwork at BZA’s Open Clinic to pose several questions for anthropological consideration. First, what is meant, or implied, by the notion of a right to health? How do the meaning and significance of this right vary when it is invoked—either with enthusiasm or with disdain—by activists, lawyers, moral philosophers, public health professionals, medical anthropologists, and politicians, among others? Second, what do divergent actors seek to accomplish by invoking this right, lobbying for it, or repudiating it? Third, whose right is this? Whose is it to claim, and whose is it to enforce? Fourth, how do invocations of this right intersect with humanitarian, Hippocratic, and other impulses to mobilize in response to social

306 Medical Anthropology Quarterly

injustice? Finally, how ought medical anthropologists to engage the right to health theoretically, empirically, and in practice?

Rather than tackling each of these questions in turn, this article instead explores ethnographically how a single human rights NGO translates—or, more precisely, struggles to translate—personal and institutional commitments to unauthorized im/migrants’ right to health into particular forms of discourse and practice. Running alongside this empirical thread is a theoretical challenge. Medical anthropologists, I propose, need to avoid simply rallying behind the notion of a right to health; in- stead, we ought to approach it as an ethnographic object and critically examine how it is invoked, debated, advanced, and resisted in specific local contexts. We need to survey and analyze the broad constellation of claims that employ this common discursive framework, and we need to explore this right ethnographically in all its guises: as a legal instrument, a social object, a rhetorical flourish, a node of con- tingent and precarious political consensus, a framework for translating theory into practice, and, finally, a recognizable, branded strategy for advancing a particular set of ethical or political commitments—what we might call a contemporary idiom of social justice mobilization. Finally, and as importantly, we need to ask ourselves what we mean when we invoke the right to health in our own research, writing, teaching, and advocacy efforts.

These are crucial questions for medical anthropology, not least because there exists a strong, indeed uncharacteristic, tendency among medical anthropologists to support this proposition almost without question. The notion of a right to health is appealing because it taps into a deep desire for social justice that many of us share. It evokes a sense of moral clarity absent from much of our professional engagement, and it implies a forceful, even immediate call to action. Specifically, it offers a pointed response to the scourge of preventable injuries that are not prevented, curable diseases that go uncured, and other forms of useless suffering that medical anthropologists witness regularly in the course of our work. It is the language of key leaders in our field—for many of us, our heroes. Few moral or political claims touch anthropologists as deeply or evoke as uniform a response. Without questioning the nobility of these aims or the legitimacy of these desires, we need to acknowledge the fuzziness or, to borrow from Amartya Sen (2009:355), the “mushiness” of this particular right and subject it—and our reflexive support for it—to critical review.

In proposing that medical anthropologists take the right to health as an ethno- graphic object, my aim is neither to impute naı̈veté to its advocates nor to undercut the growing movement to translate it into law, policy, and practice; to the contrary. Instead, I propose that critical ethnographic engagement with right to health dis- course and practice can enlighten us, and help us enlighten scholars in other fields, to the complexity, messiness, and “mushiness” of this right, both in general and for activists on behalf of unauthorized im/migrants in particular. At the same time, it can also deepen our understanding of the complicated and sometimes tense rela- tionships among human rights, humanitarianism, and other scholarly and popular idioms of social justice mobilization, especially in the health domain.8

One important step in this regard is to strengthen the bridge between medi- cal anthropology and the anthropology of human rights. A decade ago, Richard Wilson noted that human rights language had become “detached from its strictly legal foundations and [become] a generalized moral and political discourse to speak about power relations between individuals, social groups, and states” (2001:xv).

Ethical Theory as Social Practice at a Tel Aviv Open Clinic 307

He called on ethnographers “to look beyond the formal, legalistic, and normative dimensions of human rights, where they will always be a ‘good thing,’” and instead look “at how rights are transformed, deformed, appropriated, and resisted by state and societal actors when inserted into a particular historical and political context” (Wilson 2001:xvii). In a similar vein, Mark Goodale charges anthropologists to maintain a “skeptical distance from the exalted claims of human rights” while ana- lyzing the “different registers through which the idea of human rights is conceived” (2006:32), and Levitt and Merry call attention to the “vernacularization” of human rights discourse by local actors (2009). Analytic tools like these can help clarify what is meant, what is desired and, no less importantly, what is feared when the right to health is invoked. Medical anthropologists have asked similar questions of human- itarianism,9 but our relative inattention to right to health claims has impeded both our analyses and our understanding of the complex relationships among different idioms of social justice mobilization—including those identified as human rights– based or humanitarian. As I elaborate below, the relationship between these two idioms of ethical engagement can become especially complicated in the context of health advocacy on behalf of unauthorized im/migrants in industrialized countries.

To develop this argument, I draw on extended fieldwork at BZA, an Israeli NGO that works to advance right to health claims on behalf of “illegal” im/migrants and other vulnerable groups, including Palestinians in the Occupied Palestinian Territories (OPT), prisoners and detainees in Israeli custody, refugees and asylum seekers, and average Israeli citizens who are having difficulty realizing their right to health. The article begins by surveying the landscape of contemporary formulations and interpretations of the right to health. An overview of my research approach and methods follows. In the remainder of the article, I draw on ethnographic findings to explore how right to health commitments are expressed and negotiated by BZA activists. Here I trace the Open Clinic’s origins, activities, and internal political fissures, then introduce three BZA activists with divergent backgrounds, political inclinations, and personal motives to exemplify the organization’s internal diversity. The final section then analyzes the arc and content of a fiery intraorganizational debate revolving around the core question of this article: What does it mean to assert that unauthorized migrants have a right to health? Read in tandem, this trio of activist portraits and closely related “critical event” (Das 1995) reveal the epistemological and ethical friction between human rights and humanitarian modes of advocacy on unauthorized im/migrants’ behalf. These findings also show how the specific content of this right, as well as its potential for realization, often depend less on formal points of national or international law than on vernacular assessments of “deservingness” (Willen forthcoming-a)—that is, on questions of ideological commitment, morality, and ethics bearing a distinctly local cast.

The Right to Health: Foundations and Contestations

What exactly are human rights? Are there . . . really such things?

—Amartya Sen, 2009

According to Amartya Sen, a commitment to human rights “can be very attractive as a general belief, and it may even be politically effective as rhetoric,” yet “[m]any

308 Medical Anthropology Quarterly

philosophers and legal theorists see the rhetoric of human rights as just loose talk— well-meaning and perhaps even laudable loose talk—which cannot, it is presumed, have much intellectual strength” (2009:355). This skepticism, Sen notes, is as old as the idea of rights itself. In a blistering 1791 attack on the recently declared “rights of man,” for instance, philosopher Jeremy Bentham declared natural rights “bawling on paper” and “rhetorical nonsense, nonsense upon stilts” (cited in Sen 2009:356). Are human rights as “loose” or “nonsensical” as critics allege?

In principle all human rights are equal and indivisible, but civil and political rights (sometimes called “first-generation rights”) have garnered much broader recognition and support, and proven more readily justiciable, than economic, social, and cultural rights (ESCR, or “second-generation rights”). In Paul Farmer’s terms, ESCR have long been “the neglected stepchildren of the human rights movement” (2005:xxiv). Yet things have begun to change because of, in part, increased attention to ESCR in diverse fields of scholarship; increased interest and commitment at the United Nations, which in 2002 created the new role of Special Rapporteur on the Right to Health; and the work of international NGOs like Partners in Health and, more recently, Amnesty International (Khan 2009).

These developments notwithstanding, human rights concepts, and especially the notion of a right to health, often are deployed in a freewheeling manner. As Gostin (2002:18) explains, this frequent overextension generates conceptual and epistemo- logical confusion, and it begs the question: What is the right to health? Is it a legal instrument, as proposed in a recent Lancet editorial (2008b)? Is it a framework for developing and implementing policy, as proposed by the inaugural UN Special Rapporteur Paul Hunt (2007)? Is it a moral imperative demanding a lifetime of committed action, as Paul Farmer frequently insists (2005, 2010)? Is it a floating assertion that neglects crucial questions of duty and priority, as bioethicist James Dwyer contends (2004)? Or is it simply a catchy slogan or bumper sticker? From a medical anthropological perspective, how might we make sense of these “differ- ent registers” (Goodale 2006) of right to health discourse and the divergent ways in which this right becomes “transformed, deformed, appropriated, and resisted” (Wilson 2001)?

Until recently, three broad orientations to the right to health predominated: (1) legal approaches grounded in post-WWII international law (incl., in particular, Article 12 of the International Convention on ESCR [Office of the High Commis- sioner for Human Rights 1976] and UN General Comment 14 [United Nations 1966]); (2) ethical approaches grounded in moral philosophy; and (3) symbolic or rhetorical approaches. A fourth approach emerged in the mid-2000s when public health leaders began translating this right into the language of policy making and evaluation, and a fifth approach may be emerging in the clinical realm, for instance among European physicians using top-tier medical journals to debate the meaning of this right in clinical practice.10

Across this range of approaches, divergent interpretations abound. Are all en- titled to the “highest attainable standard of health,” as stipulated by General Comment 14? If so, how is that “highest attainable standard” defined, and by whom? Are all entitled to the social determinants of good health? To be healthy, tout court? Some have argued that the notion of a right to health status is “obvi- ously absurd” (e.g., Leary 1994:28). Others, including Yamin (1996), argue that it is

Ethical Theory as Social Practice at a Tel Aviv Open Clinic 309

possible to define health in a manner that permits discussion of a right to health sta- tus. The boldest medical anthropological voice in these conversations comes from Farmer, who sees the right to health—“perhaps the least contested social right” (2005:19)—as one thread in a tightly woven fabric of economic and social as well as civil and political rights. As he declared in his keynote at the 2006 American Public Health Association convention in Boston, “if we believe in health and hu- man rights, we will need to broaden, very considerably, our efforts to promote social and economic rights for the poor. This, I would argue, is the leading human rights issue now facing public health” (Farmer 2008:8). Clearly the meaning of this right broadens, contracts, shifts, and evolves as it cycles through divergent spheres of discourse, policy, and practice.

Do “Illegal” Im/migrants Have a Right to Health?

What do these debates have to say about the health needs, rights, or entitlements of unauthorized im/migrants? Thus far, relatively little. In the past several years, the adverse health implications of migrant “illegality” have begun to garner increas- ing attention in medical anthropology and related fields, and a handful of scholars have engaged unauthorized im/migrants’ right to health directly.11,12 Yet, as several colleagues and I contend (this issue), we still lack a clear, robust theoretical frame- work for research on “illegality” and health, both within medical anthropology and writ large. In sketching the contours of a viable research agenda, we priori- tize four concerns whose cascading consequences have profound implications and raise thorny dilemmas for unauthorized im/migrants, their families, and the broader social and political communities in which they live and work. These include (1) the socially, politically, and ideologically constructed nature of migrant “illegality”; (2) the broad question of who benefits from contemporary processes of unauthorized labor migration; (3) the syndemic relationships among “illegality,” inequality, and health-related vulnerability and risk; and (4) the symbolic politics, ethical ground- ing, and discursive contours of debates about migrants’ “deservingness” (Willen forthcoming-a, forthcoming-b) and “biolegitimacy” or lack thereof. In this article, I am concerned primarily with this final point and, specifically, with the fact that moral debates about “deservingness” often take place in a human rights idiom that draws strength from the purportedly universal discourse of international law.

How do local attitudes toward human rights in general, and toward the right to health in particular, affect advocacy efforts on unauthorized im/migrants’ be- half? With this question in mind, let us now turn to Israel, where human rights are not viewed by the general public as an inherently “good thing,” but instead carry powerful connotations of a highly contentious brand of local politics: vocal opposi- tion to the Israeli occupation of Palestinian people and lands. Under circumstances like these, what does it mean to advance an argument on behalf of unauthorized im/migrants’ right to health?

Research Methods and Approach

To engage these questions, I draw on more than 30 nonconsecutive months of ethnographic research conducted between 2000 and 2010 with unauthorized

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transnational im/migrants and Israeli im/migrant advocates in the southern neigh- borhoods of Tel Aviv. In broad terms, the study aims to make sense of how “illegal” migration status is configured by the Israeli state and civil society and, moreover, how this rapidly evolving form of legal (non)classification shapes and constrains im/migrants’ embodied experiences of health, illness, pregnancy, and reproduction, as well as their broader experiences of subjectivity, morality, and being-in-the-world. Put differently, the study employs intersecting lenses of legal anthropology and the anthropology of the state, medical anthropology, and the anthropology of experi- ence in taking a “critical phenomenological” (Desjarlais 1997) approach to migrant “illegality” (see, e.g., Willen 2007a, 2007c, 2010a).

The ethnographic anchors for the study include (1) two communities of unautho- rized im/migrants in Tel Aviv (the Filipino and West African communities),13 and (2) three Israeli migrant advocacy organizations. Since my initial research questions involved unauthorized im/migrant women’s experiences of fertility decision-making, pregnancy, and reproductive health, many of the migrants I first met were pregnant women or new mothers (see Willen 2005). I accompanied a subset of these women, and sometimes their male partners, as they sought either abortions or prenatal checkups, diagnostic tests, and in three cases, labor and delivery in Israeli hospi- tals. I also participated actively in the home, family, and community lives of key research participants and attended a wide variety of community activities including church services, life-cycle events (i.e., weddings, christenings, funerals), holiday and community celebrations, and community meetings.

Of the three migrant advocacy organizations in which I conducted fieldwork, two—BZA’s Open Clinic and a hotline for im/migrants in detention—are local hu- man rights organizations (NGOs) serving migrant workers, asylum seekers, and refugees. The third organization, an Aid and Information Center that serves the same groups, is municipally funded and operated. Intensive, long-term involvement with these three very different organizations provided invaluable opportunities to meet migrant workers, to become a familiar face in the city’s im/migrant com- munities, and to set the study into motion. Furthermore, it enabled me to train a long-term ethnographic gaze on the complicated and dynamic im/migrant advocacy community itself.

Here I focus on research conducted at BZA’s low-tech, small-scale Open Clinic, where I spent approximately three evenings (15 hours) per week as a participant- observer and reception-desk volunteer during my primary period of field research (fall 2000; summer 2001–summer 2003). At BZA I also attended, audio-recorded, and took notes at weekly staff meetings, occasional clinic staff meetings, periodic executive board meetings, and annual planning retreats. Additionally, I conducted a 68-item, self-administered survey in 2002–03 with a multinational convenience sample of 170 English-speaking clinic patients. Survey questions covered basic de- mographics, migration motives, experiences of everyday life in Israel, current health status, health care management strategies, and beliefs about deservingness to health care in Israel (Willen 2005, forthcoming-a). Since 2000, I also have conducted more than 25 semistructured interviews (13 of them audio-recorded) and dozens of informal interviews with BZA staff members and volunteers (clinic directors, the coordinator of the Project on Migrant Workers, young adults performing Na- tional Service at BZA in lieu of compulsory military service, clinical volunteers, and

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reception-desk volunteers). The study was conducted with approval from BZA and from the institutional review boards at Emory University, Harvard Medical School, and Southern Methodist University.

A Shoestring Clinic—and a “Fig Leaf for Shame”?

As I learned early on from Eran Moyal,14 the first coordinator of BZA’s Project on Migrant Workers and inaugural director of the Open Clinic, the clinic was created with two goals in mind: first, to offer policymakers concrete evidence that the country’s growing undocumented population urgently needed health care, and second, to hand responsibility for the clinic, and the problem, over to the state. At no point was it meant to serve as a constant or comprehensive source of health care for this large, linguistically and culturally diverse population. Neither was it meant, as a senior Israeli physician and longtime clinic volunteer put it, to serve “as a fig leaf for the shame of the state and Israeli society” (Fried 2003). Given the scope and depth of need among the country’s migrant workers, the first goal was relatively easy to accomplish. The second, however, has bordered on the impossible, and the clinic remained open and busy as this article went to press.

During my fieldwork, the clinic was open four evenings and one morning per week (approximately 20 hours), and it served as the place of first, and often last, resort for transnational im/migrants with health concerns, especially those without authorization status. The tremendous diversity among the patients mirrored the diversity of health concerns that brought them in seeking care.15 Clinic volunteers, almost all of them Jewish Israelis, were less diverse. Most volunteered in the clinic about one evening per month, although some came more or less frequently. Physician volunteers ranged in age and experience from medical residents to well-known division chiefs at area hospitals, and almost all were middle- or upper-middle-class Ashkenazim (Israelis of European descent). Nurses also ranged widely in age, and the majority were middle class and Ashkenazi. The volunteer reception staff included university students of both Ashkenazi and Mizrah. i (Middle Eastern) backgrounds, pensioners, and a rotating array of others including a veterinarian, a former army medic, the owner of a trendy bookstore–café, and an artist and longtime area resident who volunteered in gratitude to her new neighbors for replacing the drug addicts who used to hang around the neighborhood. Although some volunteers came to the clinic on just one or two occasions, the clinic was staffed by a relatively stable rotating group of volunteer physicians, nurses, and reception staff throughout my primary period of fieldwork. A few volunteers did drop out in this period; for instance, one physician moved away from Tel Aviv, another had a stroke, and a third took a lengthy break but later returned. Several elderly volunteers stopping coming when they became hampered by failing eyesight or an inability to drive, and some younger volunteers stopped coming when they left the country to travel or study abroad. All clinic staff and volunteers were continually challenged, and often deeply frustrated, by the high patient volume, the gravity of the health issues patients faced, and the clinic’s embarrassingly limited resources. The risk of burnout was highest, however, for the professional staff member responsible for directing the clinic, a role that changed hands several times during my fieldwork.

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Although the clinic’s initial mission focused narrowly on primary care, it quickly expanded well beyond its original scale and scope. During my years in the clinic, staff and volunteers worked assiduously to confront virtually every health issue that arose, even when a patient’s need far surpassed the small clinic’s capabilities. Typically the more challenging cases involved finding volunteer physicians willing to perform procedures in their own (publicly funded) clinic offices or in a donated (often private) surgical space. Through such efforts, the clinic managed to arrange minor outpatient surgeries like the removal of suspicious moles; more substantial surgeries like hernia operations; and occasionally major surgeries, for instance to treat breast cancer, ovarian cancer, and in one case a benign but rapidly growing brain tumor. At one point, a volunteer oncologist even administered chemotherapy in his own kitchen. Clearly, the clinic was far from equipped to meet its patients’ needs; its efforts were like trying to sip water from a gushing fire hydrant.

During the first decade of the 2000s, the clinic underwent several administrative changes and multiple relocations. The size and composition of its patient population also changed dramatically following two major developments: an expensive, high- profile, and occasionally violent mass deportation campaign targeting unauthorized im/migrants (Willen 2007a, 2010a), and a more recent influx of Sudanese and Eritrean asylum seekers and refugees arriving overland via Egypt (Anteby-Yemini 2009; Kritzman-Amir 2010; Willen 2010b). The latter of these events completely overwhelmed the clinic’s capacity, and in spring 2008 BZA temporarily closed the clinic down to protest the government’s neglect of this new im/migrant population’s health needs. Indeed, this temporary closure lays bare the fundamental question that has lingered unanswered since the establishment of the BZA clinic in 1998: Is it most fundamentally a humanitarian endeavor—and, as such, has it become a fig leaf for an eroding welfare state and an array of exclusionary government policies? Or, alternatively, is it a human rights project whose aim is to rectify the causes of individual and group suffering using ethical concepts and legal instruments of international provenance?

BZA and Its “Stepchild”

Sunday afternoon, summer heat, a long row of patients squeezed shoulder to shoul- der in white plastic lawn chairs. The clinic director and a volunteer reception- ist rush back and forth through the cramped clinic space, blue cardboard patient files in hand, crisscrossing multilingual clouds of conversation: Tagalog here, Igbo there, a whispered conversation in Spanish, broken Hebrew accented with Russian, Turkish, Romanian, Chinese. In the improvised examination rooms in back, clinical encounters are staged in whatever language works: Hebrew, English, perhaps Spanish or French, occasionally Russian. For patients, there is little space for pri- vacy, and for clinic volunteers, there is little time or patience for things like patient confidentiality or “cultural competence.” Here volunteers do the best they can: to obtain enough information to open a patient file; to understand a patient’s chief complaint; to find a volunteer specialist here or a discounted procedure there; to squeeze in just one more patient; to keep volunteer doctors from noticing they’ve stayed an extra half hour, hour, two hours.

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Despite BZA’s explicit self-definition as a health and human rights organization, the decision to establish the clinic in 1998 was controversial, and a decade later it still had not won the unanimous support of the NGO’s activist base. Since its creation, a certain tension lingered between the Project on Migrant Workers, which runs the clinic, and BZA’s other projects, especially those focused on the OPT. As one staff member put it, the clinic operated as “a kind of independent autonomy” or a “stepchild of the organization.” On occasion (incl. the turbulent moment addressed in the final section), this “stepchild” status stimulated heated debate about the clinic’s mission, its goals, and even its very existence. To understand what animates these debates, we need to turn back to BZA’s establishment in 1988, just months into the first Intifada (Palestinian national uprising) and nearly a decade before Israel had become a destination for transnational labor migration. The founders of BZA, a small group of health care professionals who opposed the health-related human rights violations committed by Israel against Palestinians in the OPT, understood full well that in contemporary politics, health is a “meta-value,” and “speaking in the name of health is one of the most powerful rhetorical devices” (Greco 2004:1). The fledgling group began organizing under this banner, and it quickly earned a place of respect among the handful of Israeli groups ready to use a human rights platform to work for change, even if that meant tangling publicly with high-ranking politicians, the military, and the courts. The universalizing meta-discourse of health as a human right, these activists wagered, just might trump particularist moral debates in which their community of concern—Palestinians living under Israeli occupation—would otherwise be cast as categorically “undeserving” of attention or care.

“Dreamers,” “Traitors,” and “Self-Hating Jews”: The Local Politics of Human Rights

Complicating this assumption, however, is the fact that human rights discourse is most commonly associated in Israel with political activism against the occupation and in support of the left-wing “peace bloc.” Human rights activists and even journalists who report on Israeli repression and violence in the OPT are publicly doubted, maligned, and subjected to verbal abuse. In early 2011, for instance, one right-wing parliament member sponsored a bill calling for a wide-reaching inquiry into the budgets and finances of local human rights organizations; in expressing support for the bill, a parliamentary colleague went so far as to characterize these organizations as “traitors,” “germs,” and “enemies of Israel.”16

Importantly, antagonism toward human rights is not limited to the far right wing of the Israeli political spectrum. In a 2010 poll, for instance, 57.6 percent of Israelis surveyed agreed that “human rights organizations that expose immoral conduct by Israel should not be allowed to operate freely,” and a majority sup- ported “punishing journalists who report news that reflects badly on the actions of the defense establishment” (Kashti 2010). These developments resonate with the sort of equations I encountered regularly in the field: “human rights” equals “pro-Palestinian”—which equals “Arab lover,” “self-hating Jew,” and other such slurs. Given this strong web of association, many of BZA’s antioccupation activities elicit strong negative reactions from a large segment of the Israeli public, and the

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organization’s commitments often draw local condemnation and ire, rather than the reflexive, commonsense support human rights often garner in other contexts.

Although human rights activism on behalf of groups other than Palestinians is less vigorously condemned, it tends to carry a certain amount of guilt by association. As I learned from a veteran human rights lawyer, scholar, and former academic di- rector of a refugee rights clinic at one of Israel’s top law schools, such accusations of “guilt” sometimes take the form of ad hominem attacks. She and her colleagues, she explained, are accused regularly of being “out of touch with reality, including ignoring the dangers of life in Israel—both physical and economic. You are consid- ered to be a dreamer, an idealist, and that’s not a compliment, but rather a term used to refer to someone who is unrealistic, naı̈ve, and immature.” To borrow Wilson’s term, the social life of human rights in Israel is distinctive indeed.

Transnational Migration to Israel: Multiple Pathways

Significantly, the impetus for BZA’s Open Clinic—the arrival of hundreds of thou- sands of transnational migrant workers in the mid- to late-1990s—was a direct result of the ongoing occupation. Following the first Intifada of the late 1980s, in 1993, the Israeli government began authorizing the recruitment of transnational workers from Thailand, Romania, Bulgaria, and China, among other countries, to replace Palestinians now denied access to their former jobs in Israel on “national security” grounds. Tens of thousands of agricultural and construction workers who arrived “legally” later lost their status, largely as a result of the country’s unregulated and corrupt system of transnational labor recruitment, which has been well documented by Kemp (2004). Briefly, private employment agencies recruit labor migrants and charge them anywhere between $5,000 and $20,000 for the “privilege” of coming to work in Israel—in explicit contravention of Israeli laws prohibiting the extraction of such fees—thereby earning billions of dollars for recruitment agencies based both in Israel and in migrants’ countries of origin (Kemp 2004; Workers’ Hotline and Hotline for Migrant Workers 2007). Local human rights groups estimate that tens of thousands of labor migrants and their families have gone into debt to finance their travel to Israel. Often these recruitment companies have brought workers to Israel even when no jobs were available; in such instances, labor migrants lose their legal status almost immediately after arriving in the country. Meanwhile, tens of thousands of “illegal” migrants from a separate set of world regions (South Amer- ica, Africa, Eastern Europe, and the former Soviet Union) arrived as tourists or Christian religious pilgrims and found work in housecleaning, childcare, restaurant work, and other informal market sectors.17 Per definition, none of these economi- cally motivated transnational migrants can stake a bureaucratically legible claim to Israeli citizenship; put bluntly, none are Jewish.

Although health care is considered a public good in Israel and nearly all physicians are publicly employed (growing neoliberal pressures toward privatization notwith- standing [Filc 2009]), transnational migrants are excluded from the country’s na- tionalized health care system. Theoretically all employers are required to ensure that their employees, regardless of status, possess health insurance, yet this obligation is poorly enforced for “legal” workers and completely ignored for “illegal” workers. Private health insurance options are scarce and deficient, and private fee-for-service

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options are prohibitively expensive. Several exceptional forms of care are available, at least theoretically, including emergency care (albeit at high tourist rates); subsi- dized or even free prenatal care and delivery care (Willen 2005); and subsidized or free treatment for tuberculosis, sexually transmitted infections, and HIV in pregnant women (Filc and Davidovitch 2007; Rosenthal 2007).

Ethical Theory and Social Practice: Activist Motives and Moral Journeys

As the number of transnational migrants grew exponentially in the late 1990s, and as the scope and degree of health need within this diverse population became increasingly evident, some BZA staff and activists felt it necessary to expand the organization’s mission and create an Open Clinic in Tel Aviv. Yet not all BZA staff and volunteers concurred that this new population fell within their bailiwick. Of the activists I interviewed and alongside whom I volunteered, most fell roughly into one of four groups. The first group, health professionals who sharply oppose the Israeli occupation of Palestinian people and lands, were attracted to BZA explicitly for reasons of politics and ideology. For them, BZA is a potent megaphone for anti- occupation messages capable of amplifying international legal principles through the trusted, authoritative voices of clinical medicine and the “meta-value” of health (Greco 2004). Some members of this first group saw any expansion of BZA’s mission as a potential distraction from the organization’s “real” goal: bringing the occupa- tion to an end. A second group included individuals who espouse what is effectively a humanitarian (as opposed to a rights-based) commitment to health care for all. At times, this universalist motivation allowed volunteers to ignore politics and hide in a “Hippocratic bubble” (Portes et al. 2009:495) of individual-level ethical obliga- tion while remaining disconnected, at times myopically so, from the broader social determinants of disease, injury, and ill health, including exclusionary biopolitics and structural violence. Third, although many physicians and nurses were involved with both the Open Clinic and BZA’s antioccupation efforts, a small minority clung to one “side” of the organization’s agenda while remaining deeply skeptical about, or even openly critical of, the other. Finally, a handful of activists, most of them professional staff as opposed to volunteers, described their motives and commit- ments explicitly in terms of universal human rights. For activists in the first three groups, the technical definitions and interpretations outlined earlier in this article were far from their minds; instead, BZA served primarily as a vehicle for advancing a locally specific, and often deeply personal, set of ethical or political commitments. For activists in all four groups, however, the choice to become involved with the clinic often initiated a complicated moral journey with transformative implications.

Below I introduce three activists, each of whom brings a very different set of ethical commitments to his or her efforts on unauthorized im/migrants’ behalf. The first two, physicians Dr. Sarit Peled and Dr. Guy Barkan, belong, respectively, to the first and second of the groups identified above. The final activist, Kobi Levy, is not a physician but a savvy human rights advocate and member of BZA’s professional staff. His role as coordinator of BZA’s Project on Migrant Workers, and his radical agenda for the organization, place him in the fourth group and identify him as one of the few BZA activists committed to an explicit, internationally recognizable human rights paradigm.

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Dr. Sarit Peled: “Why do [migrant workers] deserve this? They choose to come here, right?”

I remember vividly the first time Dr. Sarit Peled visited the Open Clinic in October 2000, primarily because she didn’t know why she was there—and said so. A young resident in internal medicine with a warm smile and a soft voice that could turn sharp in an instant, Dr. Peled spent her first visit challenging the clinic’s longsuffering director, Yael Grossman, to explain and defend the clinic’s raison d’être. Dr. Peled was drawn to BZA because of its work in the OPT, she explained, and she “had never thought about ‘illegal’ foreign workers as a population needing help. Why do they deserve this? Palestinians, prisoners I understand—but why foreign workers? They choose to come here, right? My time is limited,” she continued defensively. “I’m not sure this is worth it.”

Unaccustomed to such demands from potential volunteers, Grossman nonethe- less stepped up to the challenge. In the soft, measured tone I had come to know well from our long evenings together at the reception desk, she riffed on an expla- nation I had heard Israeli migrant advocates at BZA and other organizations offer time and time again. Migrant workers “are not on vacation,” she explained. “The situation in their own countries is so bad. Many want to work and return home. . . . I’m not saying that I—or BZA—think the number of migrant workers in the country should be increased. It should be reduced. Also the minimum wage should be raised.” As Grossman continued her impassioned defense, she traced lines of causality, pinpointed local problems, and concluded on a practical note: “There are two reasons people come to work in the clinic. Either ideology, or to help people. Either is ok. But above all, don’t come if you’re not comfortable.”

Later in the evening, after Dr. Peled had left, Grossman needed to blow off steam. She had better things to do, she told me, than argue with a potential volunteer. “I’m not going to convince anyone to come.” And yet that is precisely what she had done. Two weeks later, Dr. Peled showed up at the clinic as a scheduled volunteer, and again two weeks after that. On that second occasion, I overheard her spontaneously issue a strong defense of the clinic’s mission, echoing many of Grossman’s points. For Dr. Peled and many other BZA volunteers, a politically motivated desire to help Palestinians was the “hook” that got them involved, sometimes to their own surprise, with the Open Clinic’s efforts on behalf of unauthorized im/migrants.

Dr. Guy Barkan: “Way too radical for me”

Like Dr. Peled, psychiatrist Guy Barkan also began volunteering at the Open Clinic during his residency. A long-time clinic volunteer with strong research ambitions, Dr. Barkan noted in a 2007 interview that friends and colleagues occasionally criticized his commitment to the clinic. He repeated one such remark using a biblical phrase that figures commonly in such critiques: “A friend once said to me ‘first take care of the poor of your city’ [aniyei irh. a kodmim]—but the ‘poor of my city’ have ID cards, they have social services, they can access a doctor.”

When I asked about his most memorable experiences at the clinic, Dr. Barkan spoke at length about an African patient who was treated for breast cancer after he had detected a lump in her breast and referred her for specialized care. Because physicians tend to volunteer just once every few weeks, patients rarely see the same

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doctor on consecutive visits. About a year and a half after their first encounter, the patient arrived “really, really late in the evening, when we were all ready to go home,” requesting a cream to soothe the dry skin on her breast. “You were my first doctor,” she said, although it was only after flipping to the very back of her now-thick medical file and seeing his own handwriting that he could confirm, with considerable embarrassment, her confident assertion. On reading her chart more carefully, Dr. Barkan was dismayed to learn that the patient had been treated for breast cancer, including the radiation that left her skin painfully dry, but that the cancer had returned and her prognosis was bleak. He also felt terrible guilt about his failure to follow up on her case.

After this second encounter, he stepped back from his clinical role to become what he called a kind of “total case manager”: supervising his former patient’s care, taking her out to a restaurant, buying toys for her small daughter. I asked how he would characterize their relationship. “What can I call this? I don’t know, compassion? If she needs a brain CAT scan at 3:00 A.M., I’ll take her. . . . Look, she’s going to die, she’s dying. She already can’t see out of one eye . . . and she’s in denial . . . and her daughter . . .” Clearly Dr. Barkan’s commitment to the Open Clinic, and particularly to this former patient and her young daughter, ran deep. Yet he had no interest in the political debates that raged at BZA about the broader implications of the clinic’s work. To him, these internal debates fell somewhere between the pedantic and the misguided. “I was at this meeting once of [BZA activists], a dinner party,” he explained,

and someone started making radical leftist statements, like “you shouldn’t give people care, that actually makes things worse, if you provide care then the state can wipe its hands of the matter.” That’s way too radical for me. I’d be very happy if there were services like that provided by the state, but they’d close down the same day. . . . That’s just not the right way to look at it. . . . you just have to do it [i.e., provide care voluntarily]. Period.

Although Dr. Barkan vaguely supported BZA’s efforts to advance unauthorized im/migrants’ right to health in the legislative and policy spheres, he expressed deep skepticism about the possibility of dramatic change. Rather than getting tangled up in such battles, he preferred to stay away from rights debates and instead pursue a humanitarian stance—to just “come in and do what I do.”

Kobi Levy: “A Different Number One Goal”—Changing Immigration Policy

Kobi Levy, the coordinator of BZA’s Project on Migrant Workers and Refugees, was drawn to BZA for different reasons from either Dr. Peled or Dr. Barkan; what attracted him was precisely the organization’s broad human rights agenda. A tall, soft-spoken man in his early thirties, Levy was among the only BZA activists I interviewed who drew a direct connection between family history—in his case, his parents’ immigration to Israel from North Africa—and a present-day commitment to migrant advocacy.

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I’m a child of an immigrant family. That’s a strong feature of my family. The transition, the very partial integration into Israeli society . . . these things are very present. Language, Arab culture—something which for a long time, even today, on one hand exists in my house, yet on the other hand there’s always an effort on my parents’ part to push it aside. . . . It’s had a very significant influence on my choices.

When I interviewed him in 2007, less than a year after he had joined BZA’s professional staff, Levy acknowledged that some board members saw his project as an ongoing distraction from BZA’s core agenda.

I’m relatively new here, but I know how things were in the past, and I can still feel it among board members . . . we’re not only interested in the rights of Palestinians in the Territories. That’s one thing. Second, when we’re talking about immigration policy, . . . there’s a certain kind of opposition among board members. Maybe it’s just something that’s not entirely clear to them.

For Levy, unlike some of the organization’s activist base, the right to health applies across the board—to Palestinians, to unauthorized im/migrants, to asylum seekers and refugees, and to other “status-less persons” (Hebrew: khasrei ma’amad; a term that came into use at BZA during his tenure as project coordinator)—and it is inextricably entwined with other human rights that are equally central to BZA’s mission. Often, he explained,

[our] demand of the establishment, or whomever, isn’t necessarily a demand for medical care but a demand to grant someone status . . . or to register someone at the Ministry of Interior, or to give a child a [government] ID card. That’s a different kind of right . . . but it directly influences the right to health. . . . Actually the right to health is just one other way to look at things . . . but it’s not all we do.

I was curious to know how this broadly construed human rights agenda in- fluenced his strategic aims. “What,” I asked, “is the goal of your project?” His response: “To effect change in Israel’s immigration policy via the right to health” (emphasis added).

Levy’s answer caught me by surprise for reasons that will become clearer in the section to come, where I analyze a turbulent moment that occurred well before he joined BZA in which this goal—changing Israeli immigration policy—was effectively written off as an idea unworthy of serious consideration. Intrigued, I asked for clarification: “So basically the number one goal supersedes the right to health?” His response: “There’s a different number one goal.”

It’s to somehow advance the idea of becoming a state that’s Jewish—which is fine, it can stay Jewish—but to become a state that has room for other kinds of people. Yes, definitely, immigration policy and the rights of immigrants: that’s where I’m trying to achieve change. Of course if I can make changes there, it’ll also have an influence on their right to health.

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Levy’s approach to the Project he coordinated and to BZA’s agenda overall, struck me as innovative and intriguing but also deeply controversial. Not only did he explicitly declare the right to health but one among many human rights on BZA’s agenda, but he also rejected the humanitarian “Hippocratic bubble” that allowed some activists to focus on immediate health concerns while skirting larger questions of right. Instead, he was attentive to how structural violence and social exclusion (although he did not use these terms) produce migrant “illegality” and associated forms of vulnerability and health risk in the first place. Finally, by ranking immigration reform above health rights, his political stance diverged from the BZA mainstream, where most staff and activists identified reliable, affordable, quality health care for unauthorized im/migrants and others lacking status—not immigration reform or national self-redefinition—as the organization’s number one goal. For Levy, immigration reform is how this ethical theory of global provenance— the notion of a right to health—ought to be translated into local-level social and political practice. How do others at BZA understand this translational task?

Human Rights, Humanitarianism, and Realpolitik: Competing Idioms of Social Justice Mobilization

MSF [Médecins Sans Frontières, or Doctors Without Borders] limits its agenda with a humanitarian sensibility, resists the responsibility of any claim to power, and offers no general platform for an alternative social order.

—Peter Redfield, 2006

According to Peter Redfield, Médecins Sans Frontières, the archetype of global medical humanitarianism, “embodies the moral insistence of a human right to health” (2005:333; emphasis added). It has developed a sophisticated “technical ap- paratus” for providing medical care in crisis situations, but the organization “almost never claims to represent a comprehensive solution” (Redfield 2005:330). Rather, MSF tends to choose the “seductive clarity of denunciation” (Redfield 2005:349) over the path of courts-based advocacy or political lobbying in the messy world of realpolitik. BZA, in contrast, is a small grassroots organization and not a major global NGO; it explicitly self-identifies as a human rights group, not a human- itarian organization; and its team is well acquainted with the nitty-gritty of legal casework and parliamentary lobbying. In certain respects, however, the institutional inclinations Redfield attributes to MSF are also characteristic of BZA. In this final section, I explore one moment in which these inclinations found clear expression: a heated intraorganizational debate convened in spring 2002 to chart a path forward for the organization’s Project on Migrant Workers. Two issues proved especially contentious during this debate, which involved five and a half hours of discus- sion spanning two meetings18: first, conflicting interpretations of the proposition that unauthorized im/migrants have a right to health, and second, disagreement about whether BZA should be in the business of influencing, or attempting to in- fluence, public policy. On both counts, and to some activists’ great dismay, the organization revealed itself to be teetering on the fence between human rights and humanitarianism.

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According to BZA Executive Director Oded Blum, the goal of this discussion was “to develop first, our pure human rights objective, and second, [our] strategy.” Eran Moyal, inaugural coordinator of the project and a veteran staff member, refined this goal: “The question now is: what can be done in the [current] Israeli political at- mosphere?” Widely viewed as a local expert, Moyal had by then successfully spear- headed a number of legal and policy campaigns leading to limited improvements in health care access for authorized migrant workers, children of transnational im/migrants and, to a certain extent, im/migrants living with HIV/AIDS. Moyal launched the discussion by presenting four possible action pathways:

1 A campaign to include all migrant workers in Israel’s nationalized health care system;

2 An enforcement campaign targeting employers, who already are legally ob- ligated to confirm that all noncitizen employees, including unauthorized mi- grants, have health coverage;

3 A campaign to ensure a limited basket of “core services” provided by either the state or the municipality; or

4 A “legalization” campaign framed as a precondition for full realization of im/migrants’ right to health.

Below I briefly discuss the first three possibilities, followed by a more detailed discussion of the final, most contentious option.

The first proposal, integrating migrant workers into Israel’s nationalized health care system, garnered support even though it was deemed a radical proposition with little chance of success. Still, several staff members preferred it to any sort of humanitarian or charity-based alternative that would, as Oded Blum put it, convey the wrong message: “we would be saying it’s charity and they don’t have a right.” The second option, an enforcement campaign targeting employers, met with out- right opposition. A handful of private insurance options already existed for “legal” workers, and most excluded preexisting conditions. Also, because employers, rather than employees, were typically named on such policies, any sign of illness or injury could leave workers vulnerable to losing both their jobs and, consequently, their legal status. Finally, activists roundly condemned the local insurance industry’s no- torious “plane ticket policy,” whereby insured individuals with serious diagnoses do not receive full treatment in Israel but instead are flown “home” regardless of the availability, affordability, or quality of care in their communities of origin.

Some supported the third option, a limited basket of state- or municipally pro- vided “core services,” suggesting it would finally hold the government accountable for ensuring a minimum level of health care to all transnational im/migrants. Al- though the proposal on the table called for only primary care, Blum predicted it would offer more. “The moment you offer primary care, you can’t impose any limits,” he argued. “You can’t refuse to deal with a cancer patient.” To my ears, this option sounded like a recycled version of the original, failed agenda of BZA’s own Open Clinic: a primary care clinic with an equally open heart but a somewhat larger purse and a Ministry of Health address.

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Is “legalization” a right to health issue?

The fourth option, “legalization” as a pathway toward full inclusion in the na- tional health care system, revealed the deepest and most significant differences of opinion among BZA activists. Several points proved especially controversial. The first hinged on Israel’s “Law of Return.” Crafted in the wake of World War II and the Shoah (Holocaust), the Law of Return inverts Nazi law by offering Israeli citizenship to anyone who might have fallen victim to the Nazis—that is, any- one with one or more Jewish grandparents and their immediate relatives. Virtually all others—transnational migrant workers, asylum seekers, Palestinian spouses of Israeli citizens, children born in Israel to members of these groups, and others who cannot demonstrate a bureaucratically legible connection to the Jewish people—are excluded. One longtime staff member, Noa Goldman, argued that the real problem lies in the exclusionary nature of Israel’s migration regime, and that the only real remedy would involve eliminating the Law of Return altogether. Only a tiny mi- nority at BZA, and an even smaller minority of the Israeli public, would likely have supported Goldman’s proposal.

Another topic of disagreement revolved around the question that eventually topped Kobi Levy’s agenda five years later: the question of whether “legalization” was a necessary precondition for the realization of unauthorized im/migrants’ right to health. A number of physicians on the executive board opposed legalization on practical grounds, ideological grounds, or both. Dr. Green, for instance, argued that growing neoliberal influences and creeping privatization had created complicated ethical dilemmas for the Israeli health care system, and for Israeli physicians, and that the needs of Israeli patients had to take ethical precedence. “I try to be very pragmatic,” he said,

There are huge forces working against these objectives, like the huge numbers of unemployed people. First, to expect things from a government that’s supposedly trying to encourage Israelis to work is very unrealistic. Second: the rights of Israeli patients. Every day I deal with situations where I have to refuse care to people without money. I don’t know if you realize it, but the situation of the Israeli taxpayer is very bad right now. The Sick Funds [nationalized HMOs] are refusing to cover such basic things as follow-up care after surgery. Covering [unauthorized migrants] would be hugely expensive.

At this point Dr. Berger, a senior board member known for not mincing words, retorted, “it would cost less than one bypass road.” The expensive, well-designed roads to which she referred are constructed in the OPT for the exclusive use of Israeli settlers and, because they are off limits to Palestinians, they are sometimes dubbed “apartheid roads” by the government’s strongest critics.

Several board members spoke in support of Dr. Green. For instance Dr. Husseini, one of the only Palestinian–Israeli members of the board, said, “we’re wasting a lot of energy, time, and maybe money looking for a law or running to courts without giving primary care, humanitarian aid, to people.” Before long, Dr. Mintz, Chairman of the Board, complained that the conversation was losing focus:

322 Medical Anthropology Quarterly

The State of Israel, which can barely define itself, is not about to absorb another population. It’s not going to happen. Therefore I—we always get into these global discussions—we’re sort of astronauts in this department—therefore I think we should work on the humanitarian issues. Period.

Multiple lines of tension crosscut this lengthy, meandering conversation, but the deepest gulf divided board members with humanitarian inclinations from the human rights-oriented professional staff. By the end, Blum and Moyal wanted to shoot for the max and wage a rights-focused campaign that might, if successful, radically transform how migrant “illegality” is configured in Israel—essentially by eliminating it altogether. The chairman and several board members, in contrast, leaned toward a more modest agenda inspired, but not driven, by human rights principles.

This fundamental division became even clearer when Blum tried to steer the conversation toward closure. Moyal asked, “Do we start with ‘every person liv- ing here is entitled to all health rights?’” A board member, Dr. Feierstein, said, “we should start with a practical first step toward the ideology.” At that point, Dr. Mintz, drew the line:

There’s a problem with our approach. Our project is not legalization. We’re doctors. We don’t know anything about this. Let’s set limits. My number one concern is health, that all people who need health care will get it from the state.

Ultimately, then, five and a half hours of debate yielded neither clarity nor consensus about the specific content of unauthorized im/migrants’ right to health or about the optimal, or even most realistic, pathway through which this right might be realized.

Multiple factors contributed to this lack of consensus including, in particular, the inherent difficulty of translating global configurations of ethical theory into concrete, consensually agreed-on forms of social and political practice. Ostensibly, the staff and volunteers at BZA were aligned behind a common set of principles and goals enshrined in the organization’s eponymous commitment to health and human rights. Yet when activists began talking about the right to health, whether individually or in relation to broader questions of organizational mission and strat- egy, each seemed to have a different meaning in mind. Throughout the debate, no one quoted international human rights instruments or invoked moral philosophers or bioethicists. Neither did anyone draw comparisons to counterpart organizations in other countries or world regions. Moreover, everyone was acutely aware of the myriad obstacles to policy change and legal reform: a strained national budget, conservative national leadership, divisive parliamentary politics, a nationwide pre- occupation with “security,” an ongoing military occupation with devastating human consequences, an overburdened welfare state, an epidemic of compassion fatigue, and the stigmatization of “human rights” activism in Israel as politically tainted, naı̈ve, or even traitorous.

Ethical Theory as Social Practice at a Tel Aviv Open Clinic 323

The most striking feature of this protracted and circuitous debate was BZA activists’ complete inability or, perhaps, refusal to acknowledge the elephant in the room: the fact that a number of board members, despite their deep commitment to a health and human rights organization with a long track record and a very public profile, simply would not commit themselves to a rights-based interpretation of the right to health—that is, as a universal principle, a legal instrument, or a policy framework. Instead, board members like Dr. Green, Dr. Husseini, and Dr. Mintz adopted a distinctly humanitarian interpretation of this right—an interpretation not unlike that of MSF, which, according to Redfield, “embodies the moral insistence of a right to health.” Seen in this light (and here we see the resonance between their views and those of Drs. Peled and Barkan), health is a meta-value, a rhetorical device, and a potent symbol of a particular mode of intersubjective attention. It is an ethical discourse of global provenance that can play a valuable role when expedient; when inexpedient, however, it is to be relinquished in favor of other idioms of social justice mobilization such as humanitarianism, Hippocratic obligation, a national commitment to health as a public good, or ethical imperatives derived from collective memory or historical experience. Throughout this heated and lengthy debate, BZA’s ostensible core commitment—to the right to health—turned out to be very much a moving target.

Conclusion: Rethinking “Illegality,” Bioinequality, and the Right to Health

So do “illegal” im/migrants have a right to health? Rather than offering a straightfor- ward answer, BZA and its Open Clinic instead reveal the complexity of this question and suggest that it requires reframing along several lines. First, however objection- able or “obnoxious” (De Genova 2002:420) we may find the language of “illegal” migration and migrant “illegality,” this mode of classification emerges consistently across migration settings, and it bears powerful material consequences, especially in the health domain. As I have suggested elsewhere, migrant “illegality” demands in-depth and comparative ethnographic attention along three dimensions: as a form of juridical status, a sociopolitical condition, and a particular mode of being-in- the-world (Willen 2007c). This three-dimensional approach can help us grasp how “illegality” is locally configured, how it shapes and constrains im/migrants’ life- worlds, and how it can “reach quite literally into illegal migrants ‘inward parts’ by profoundly shaping their subjective experiences of time, space, embodiment, sociality, and self” (Willen 2007c:10).

Yet this model neglects a crucial fourth dimension: the relationship between “illegality” and what Fassin calls “bioinequality,” or the epidemiological conse- quences of exclusion from the moral community (2009). Bioinequality, Fassin sug- gests, is not a simple function of biopolitics, for Foucault’s biopolitics has little to say about the questions of morality and judgment that lead to the erection of biosocial boundaries and the unequal valuation of human suffering and human lives. Rather, these health-related inequalities hinge on a largely neglected question of great consequence: the question of “biolegitimacy,” which, for Fassin, lays the foundation for what Petryna (2002) calls “biological citizenship.”

As a medical anthropologist who has worked for over a decade with unauthorized im/migrants, I have long found the language of biological citizenship and its variants

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powerful but also troubling. A few discursive contortions may render plausible the claim that average unauthorized im/migrants possess a certain form of “citizenship” despite their (often-comprehensive) exclusion, yet such efforts have long struck me as somewhat overwrought. Fassin’s rereading of Foucault, and of Petryna, explains why. What drives unauthorized im/migrants’ social and political exclusion stems not from the realm of citizenship—that is, the realm of biopolitics and governmental practice—but, rather, from the realm of collective moral judgment, understood here in terms of biolegitimacy. In seeking causal arrows, then, we must look both at and beyond the state, for determinations of biolegitimacy are not made or enforced by states alone. Rather, they emerge in the public sphere, where social institutions, the media, public opinion, and civil society all play leading roles.

If we take Fassin’s question of biolegitimacy as starting point, then the idiomatic promiscuity of health activism on unauthorized im/migrants’ behalf—put differ- ently, certain activists’ willingness to employ idioms of social justice mobilization strategically—makes good sense. Dr. Peled, Dr. Barkan and the senior physicians on BZA’s board, it turns out, are not motivated by a fundamental commitment to the notion that unauthorized im/migrants possess a basic right to health. In fact, theirs is not really a political claim at all, but, rather, a moral claim about how the Israeli state and Israeli society ought to reckon biolegitimacy. Ideological and personal differences notwithstanding, these BZA volunteers and their colleagues are linked by their refusal to deny unauthorized im/migrants biolegitimacy or exclude them from the population of human beings whose disease, injury, pain, and suffering are deserving of attention and concern. What attracts these particular volunteers to BZA, then, is not the organization’s commitment to human rights, but instead the opportunity it offers to translate a firm if inchoate ethical impulse into concrete forms of social practice. For card-carrying human rights activists like Eran Moyal, Oded Blum, and Kobi Levy, these volunteers’ willingness to interpret the juridical notion of a right to health rhetorically—that is, to treat it only, or even primarily, as a strategically valuable symbolic statement anchored in a moral insistence on health as meta-value—is a major problem indeed. And yet it is not within staff members’ power to simply pull away from their volunteers, or their executive board, and craft a more universalist, orthodox, or internationally recognizable human rights agenda. As an organization, the notion of a human right to health is BZA’s strongest tool, and its concomitant messiness or “mushiness” is their lot.

The same applies, I contend, to us as medical anthropologists. In Pathologies of Power, Paul Farmer decried the myopia that long prevented anthropologists and physicians, among others, from perceiving or responding to health-related human rights violations. Now, unlike in 1994, no one can say that “The phrase ‘right to health’ is not a familiar one” (Leary 1994:24). Medical anthropologists are partic- ularly attuned to such violations, to their roots in structured systems of inequality and violence, and to the social suffering they produce. In fact, we tend to home in on such violations, sometimes to the neglect of other important angles or avenues of research. Yet in addressing one blind spot, we seem to have developed another; we have not maintained the “skeptical distance from the exalted claims of human rights” (Goodale 2006:32) that might help us unpack its manifold, conflicting, even contradictory meanings. Neither have we taken the right to health itself as an ethno- graphic object or critically examined how it is invoked, engaged, and promoted in

Ethical Theory as Social Practice at a Tel Aviv Open Clinic 325

real-life forms of social practice. This right, it turns out, is perpetually in motion. It is in constant dialogue, and often tension, with other forms of rights discourse and other idioms of social justice mobilization. Its interpretation and implementation are shaped by local attitudes both toward health (i.e., as a common good or a com- modity) and toward human rights (e.g., as “pro-Palestinian” or “anti-Zionist”). Furthermore, as the BZA activists introduced here clearly demonstrate, interpre- tations of the specific content and the potential for realizing this right, especially as it applies to biopolitically excluded groups like unauthorized im/migrants, often depend less on formal points of national or international law than on vernacu- lar assessments of “deservingness”—that is, on questions of morality, ethics, and biolegitimacy bearing a distinctly local cast.

As medical anthropologists, we need to pay careful attention to these local mean- ings, movements, and tensions. Certainly, it is not our role to decide which interpre- tation is most authentic or correct. Rather, our task is to capture ethnographically both the power and the limits of this increasingly popular idiom of social justice mobilization in all its phases and forms. However attractive it may be to decon- struct right to health claims as utopian, nonjusticiable, or imprecise (among other possible critiques), the “seductive clarity of denunciation” (Redfield 2005:349) is not an option, for the right to health is as indispensable to im/migrant health ac- tivists, and to medical anthropologists, as it is mushy. Even when invoked in its weakest mode, or when its potential for realization is next to nil, the notion of a right to health remains a powerful tool for all who reject commonsense assertions that certain people’s diseases, sufferings, and lives are less important, less valuable, or less deserving of concern, than others’.

Notes

Acknowledgments. This research was conducted with generous support from Fulbright-Hayes, Lady Davis Fellowship Trust at the Hebrew University of Jerusalem, National Science Foundation (No. 0135425), Social Science Research Council, and the Wenner Gren Foundation. Any opinions, findings, conclusions, or recommendations expressed are those of the author and do not necessarily reflect the view of funding agencies. I am deeply grateful to the staff and volunteers at “BZA” for allowing me to become so intimately, and critically, engaged with their work. Thanks are also due to Peter Brown, Heide Castañeda, Svea Closser, Erin Finley, Dani Filc, Mark Luborsky, Anat Rosenthal, Anahı́ Viladrich, Carol Kleiner Willen, Sebastian Wogenstein, and four anonymous MAQ reviewers for their generous and constructive feedback on earlier drafts.

1. Pseudonym. 2. Two notes on terminology are in order. First, rather than eschewing the

language of “illegal” migration and migrant “illegality,” I join a growing group of scholars who insist on treating “illegality” as an object of analysis in itself (Coutin 2003; De Genova 2002; De Genova and Peutz 2010; Willen 2007c; see also Willen et al. this issue). For this reason, I retain the term but keep it in quotes. Second, I use the terms im/migrants and im/migration to indicate that the boundary

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between migration and migrants, on one hand, and immigration and immigrants, on the other, is both porous and shifting.

3. For example, Gross 2007; Ruger 2006; Toebes 1999; Yamin 1996. 4. For example, Cole 2009; Dwyer 2004; Sen 2008. 5. For example, Gruskin et al. 2005; Hunt 2007; Hunt and Backman 2008;

Mann et al. 1994. 6. For example, Lancet 2007a, 2007b, 2008a, 2008b. 7. For example, Baer et al. 2003; Biehl 2007; Biehl et al. 2009; Farmer 2005,

2008; Kim et al. 2000; Shell-Duncan 2008. 8. Scholarly idioms of social justice mobilization include, for instance, social

medicine, social epidemiology (Yamin and Irwin 2010), and, arguably, public health itself (Krieger and Birn 1998).

9. See, for instance, Fassin 2008, 2009; Feldman and Ticktin 2010; Redfield 2005, 2006; Ticktin 2006; and part 7 of Good et al. (2010).

10. For example, Barlow 1999; Godlee 2009; Jadad and O’Grady 2008. 11. For an overview of this literature, see the Working Bibliography at the

blog “AccessDenied: A Conversation on Unauthorized Im/migration and Health”: http://accessdeniedblog.wordpress.com/working-bibliography/.

12. Some philosophers and ethicists, for instance, contend that questions about unauthorized im/migrants’ right to health hinge on the relationship among rights, duties, and priorities (Dwyer 2004). Others perceive a need to balance an ethics of rights and justice, on the one hand, with an ethics of care and responsibility, on the other hand (Benhabib 1992; see Gross 2007:329–330). For political sociologists interested in health policy, human rights logic interacts with other logics (e.g., citizenship, the labor market, public health, and cost containment) interacting within three different spheres (state, market, and civil society; Filc and Davidovitch 2007).

13. When the study began in 2000, these were two of the largest and most in- stitutionally well-organized communities of undocumented im/migrants in Israel (South Americans were the third). Filipinos and West Africans had reached Israel via substantially different migration pathways. Whereas nearly all West Africans ar- rived via the “tourist loophole” (Willen 2003) in Israel’s otherwise strict migration regime and overstayed tourist visas, most Filipinos living “illegally” in Israel were legally recruited in the Philippines and later lost their authorization status. Filipino migrants came from multiple areas of the Philippines. West Africans came primarily from Ghana (from the Asante, Fante, Ewe, and Ga ethnic groups) and Nigeria (pri- marily Igbo, Yoruba, and to a lesser extent Bini). Despite the linguistic and cultural variation within the Filipino and West African communities, each functioned in key ways as a single community, largely as a result of their shared Christian faith and, for the West Africans, their common use of English as a lingua franca.

14. All activists are identified using pseudonyms. 15. An unpublished study conducted by the clinic’s medical director using a ran-

dom sample of patient files (n = 92) found the most common diagnoses to involve orthopedic problems (24 percent) followed by gynecological concerns (14 percent), infection (13 percent), dermatological conditions (12 percent), digestive problems (7 percent), heart disease (4 percent), hypertension (3 percent), neurological prob- lems (2 percent), lung disease (1 percent), and sexually transmitted infection (1 percent). The remaining 19 percent were classified as “other.”

Ethical Theory as Social Practice at a Tel Aviv Open Clinic 327

16. Ynet, “MK Ben-Ari: Eradicate Treacherous Leftists,” January 5, 2011, accessed July 3, 2011, at http://www.ynetnews.com/articles/0,7340,L-4009642, 00.html.

17. For an overview of transnational migration to Israel since the mid-1990s, see Willen 2007b.

18. These included a three-hour staff meeting and a two-and-a-half hour executive board meeting held two days later, both of which I attended and audio-recorded in addition to taking copious notes.

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2010 Collaborative Imperatives, Elusive Dialogues. Health and Human Rights: An International Journal 12(2). http://www.hhrjournal.org/index.php/hhr/article/ view/364/554, accessed July 3, 2011.

Excluded and Frozen Out: Unauthorised Immigrants’ (Non)Access to Care after US Health Care Reform Helen B. Marrow and Tiffany D. Joseph

Though the Affordable Care Act (ACA) of 2010 extends public and private insurance to 32 million individuals in the USA, it expressly excludes unauthorised adult immigrants from participating in the federally-subsidised state health exchanges and the Medicaid expansion. In this article, we show that the ACA has deepened the ‘brightness’ of unauthorised immigrants’ symbolic and social exclusion within the US health care system via a significant boundary expansion for US citizens and long-term legal immigrants that has no parallel for unauthorised immigrants. As an alternative model, we highlight two subnational jurisdictions—one city/county (San Francisco) and one state (Massachusetts)—to show how they have played more promising roles to reframe and unfreeze this ‘frozen-out’ population. While we demonstrate commonalities in how San Francisco and Massachusetts have successfully ‘blurred’ unauthorised immigrants’ symbolic exclusion and reduced their barriers to health care at the subnational level, we also highlight their mutual limitations, which signal an ongoing need for federal inclusion currently out of sight. Our findings speak to contemporary debates about whether immigrant incorporation is best achieved at the supranational, national or subnational levels.

Keywords: Immigration; Unauthorised; Immigration Policy; Health Policy; ACA

Introduction

The 2010 Patient Protection and Affordable Care Act (ACA and colloquially known as ‘Obamacare’) is ‘arguably the most sweeping overhaul of the nation’s [U.S.] health insurance system ever attempted’ (Rosenbaum 2012, 67). Phased in gradually from 2010 to 2019 with the most significant provisions implemented in 2014, the ACA’s

Helen B. Marrow is an Assistant Professor, Departments of Sociology and Latin American Studies, Tufts University, 112 Eaton Hall, 5 The Green, Medford, MA 02155, USA. Tiffany D. Joseph is an Assistant Professor, Department of Sociology, State University of New York at Stony Brook, 100 Nicolls Road, Stony Brook, NY 11794-4356, USA. Correspondence to: Helen B. Marrow, Departments of Sociology and Latin American Studies, Tufts University, 112 Eaton Hall, 5 The Green, Medford, MA 02155, USA. E-mail: [email protected]

© 2015 Taylor & Francis

Journal of Ethnic and Migration Studies, 2015 Vol. 41, No. 14, 2253–2273, http://dx.doi.org/10.1080/1369183X.2015.1051465

objective is to promote greater health care equity by reducing the number of uninsured Americans, making insurance more affordable and improving access to care (Ku 2010; Hall and Rosenbaum 2012; Kaiser Commission 2013). To meet this objective, the legislation expanded the federal Medicaid programme that offers subsidised health insurance and created health insurance exchange marketplaces1

where moderate-income individuals can purchase private insurance on their own or with federally subsidised tax credits (Rosenbaum 2012).

However, not all individuals residing in the USA will benefit from the ACA, as some immigrants, particularly the unauthorised, are excluded from the policy. In this article, we employ the sociological literature on boundaries to argue that the ACA further institutionalises the hostile political context towards immigrants that has been developing since the mid-twentieth century. By expanding health coverage to many previously uninsured US citizens and long-term legal immigrants, the ACA has generated a theoretically important boundary shift that produces an even stronger and clearer separation of unauthorised immigrants from the rest of the morally ‘deserving’ US body politic in the health care domain (Alba 2005; Willen 2012).

We first provide an overview of the ACA, briefly outlining the policy and how citizenship status influences individuals’ eligibility for insurance. Next, we delve into the sociological literature on boundaries to show how the ACA expands and further institutionalises the symbolic and social boundaries that have been increasingly drawn around unauthorised immigrants. Third, we discuss an alternative strategy for tempering—or ‘blurring’, denoted by sociologist Richard Alba (2005)—unauthorised immigrants’ exclusion via subnational ‘near-universal’ access programmes in San Francisco and Massachusetts that include unauthorised immigrants. We highlight how both jurisdictions have reduced unauthorised immigrants’ symbolic and social barriers to health care, but remain limited given unauthorised immigrants’ federal exclusion. We conclude by addressing contemporary debates about whether immigrant incorporation is best achieved at the supranational, national or subna- tional levels.

Overview of ACA Exclusions for Unauthorised Immigrants

The ACA marks a notable shift in the US paradigm for medical insurance, moving from a model rooted in welfare-based traditions that once excluded many groups deemed unworthy for financial aid (i.e., childless adults) towards a new, broader ‘national paradigm of near-universal coverage’ (Ku 2010, 1176). If fully implemented, approximately 32 million adults and children—many low-income, medically under- served and previously uninsured—could receive insurance by 2019, increasing the national coverage rate to 83–94% (Hall and Rosenbaum 2012). As of 1 May 2014, an estimated 20 million Americans had already gained coverage under ACA provisions, and the national uninsurance rate may have fallen to 13.4%, with further gains anticipated (Blumenthal and Collins 2014, 6).

H.B. Marrow & T.D. Joseph2254

The Politics of “Unequal Treatment” (2002)

…the IOM concluded that “although myriad sources contribute to these disparities, some evidence suggests that bias, prejudice, and stereotyping on the part of healthcare providers may contribute to differences in care.”

…how could bias, prejudice, and stereotyping contribute to unequal treatment, particularly given that healthcare providers are sworn to beneficence and cannot, by law, discriminate against any patient on the basis of race, ethnicity, color, or national origin?

IOM March 2002

Persistent Disparities by Race and Ethnicity

• Two decades of clinical epidemiological studies documented unequal medical and psychiatric care and treatment by race, ethnicity, gender. Many inequalities by gender, race and ethnicity in health care are not directly explainable by SES, insurance status or “access”.

• Thus, Unequal Treatment addressed “disparities” in care rather than in health status or inequalities in care.

New Energy for Disparities Research

Especially in Mental Health

• Clinician “Bias” and the culture of practice of mental health institutions: over- hospitalization, over-medication, misinterpretation of symptoms Jonathan Metzl: Protest Psychosis

• Surgeon General’s Report: Mental Health: Culture, Race and Ethnicity (2001): “historical and present-day struggles with racism and discrimination”

• https://www.youtube.com/watch?v=hzcIdCdPuUs • 4.12 – end.

Why do healthcare disparities continue to exist?

Are organizational and institutional structures more critical than individual clinician actions? How?

David R Williams: The health impacts of racism

• https://www.rnz.co.nz/audio/player?audio_id=2018761696

• 3.32 – 9.11

Hyperdiversity: Identity, Culture and Health Background

• Health care institutions have been attending to race, ethnicity and culture for many decades

• Resurgent interest in culture and medicine as a strategy to reduce health disparities

• Past 20 years have brought burgeoning “disparities” and “culture counts” movements into the heart of medical practice and training

Problem • Not clear whether this resurgent interest in culture and medicine effectively targets the

mechanisms that produce disparities

• Culture often rendered at group level, risks reductionism and stereotyping

• Increasing immigration and demographic change further challenges the fusion of identity and culture as the boundaries between groups blur and the cultural complexity of individuals within groups is revealed

• Thus, it is important to investigate how race, culture and ethnicity are understood and utilized by clinicians today and how they are influenced by these massive demographic changes

Motivating Questions • How do clinicians and their institutions provide care for diverse patient populations?

• How do clinicians view the importance of race, ethnicity and culture?

• What are the tensions and complications that arise when clinicians take race, ethnicity and culture into account in their daily work?

• What does this tell us about contemporary race and ethnic relations?

• Are current approaches to cross cultural health care effective, or might they do more harm than good?

Theoretical Approach Clinical spaces are sites for the generation of inequality

Interpersonal Processes

• Quality of doctor-patient relationships are shaped by trust and effective communication

• Universal processes of social categorization enable clinicians to sort patients into groups that are relevant to improving the efficiency of their work using existing social categories (race/ethnicity, gender, immigration status) or emergent social categories (difficult vs. model patient)

Theoretical Approach Institutional Processes

• Availability of medical interpreters, cultural brokers, or patient navigators varies from clinic to clinic and conditions access to care for linguistic minorities

• Institutions vary in the degree to which they explicitly seek to monitor and reduce health disparities

Interpersonal and institutional processes interact and are deeply affected by the larger social environment, particularly by rapid demographic change

Theoretical Approach: Universalism vs. Particularism Spectrum of Approaches to Cross-Cultural Health Care

Less Culture More Culture

Group Culture Matters

Tools: Culturally Specific Services

Racial/ethnic matching

“No one knows this population like we do”

Group Culture Matters

Tools: Cultural Competence Training

Medical Interpreting

Cultural Brokers

“let me show you this manual we use”

Individual Culture Matters

Group Culture Does Not

Tools: Clinical Ethnography

“Just ask them what their beliefs are”

Culture Does Not Matter

Tools: Universal Approach to Care

Biomedical Model

“Just be a good clinician”

Theoretical Approach: Universalism vs. Particularism Spectrum of Approaches to Cross-Cultural Health Care

Less Culture More Culture

Group Culture Matters

Tools: Culturally Specific Services

Racial/ethnic matching

Group Culture Matters

Tools: Cultural Competence Training

Medical Interpreting

Cultural Brokers

Individual Culture Matters

Group Culture Does Not

Tools: Clinical Ethnography

Culture Does Not Matter

Tools: Universal Approach to Care

Biomedical Model

Currently Favored Policy Approach

Specific Research Questions 1. How do clinicians who work in highly diverse settings conceptualize and use culture in

their daily work?

2. How well-suited are popular group-specific approaches to culture to periods of rapid demographic change and increasingly complex patterns of diversity?

Cultural Environments of Hyperdiversity Definition

A cultural environment of hyperdiversity is a social setting that is highly diverse (in terms of race and ethnicity as well as social class, immigration status and religion), dynamic (unstable or undergoing change), and multidimensional (individuals may choose to identify with broad racial and ethnic categories or narrower categories such as country of origin, neighborhood, or sexual orientation). In these settings, racial and ethnic classification is more difficult and the link between census based racial/ethnic identities and culture is likely to be weak or broken (“shattered”).

Cultural Environments of Hyperdiversity Five Scenarios

1. Multiplicity Where the number of different racial-ethnic groups is numerous, making the organizing services based on identity impractical.

2. Ambiguity Where racial or ethnic identity of patients is not easily recognized using physical features alone.

3. Simultaneity Where patients occupy multiple racial/ethnic categories at once.

4. Fluidity Where the self-asserted racial and ethnic identity of patients is flexible or changes over time.

5. Misapplication: Where an individual patient’s cultural orientation is idiosyncratic and does not significantly resemble the cultural characteristics associated with their racial/ethnic group.

Findings: Myth vs. Reality

Cultural expectations are embedded in refugee treatment programs

● Ethnic / Tribal Identity is coherent and stable

● Aversion to “Western” medicine

● Seeking treatment for trauma experience

Shattering Culture • Health care personnel do not encounter one unified block of Bantus as there are blended

families and complex local norms that shatter the assumption of cultural unanimity.

• Contrary to what is often assumed about African refugees, Sadia embraced biomedical treatment, especially medications. She was not seeking treatment primarily because of her “old” traumas; instead she sought help to relieve her stress over her children’s acculturation and her need for connection and community.

• Culturally specific services for refugees and other disadvantaged groups, even ones that appear on the surface to be culturally homogeneous, are challenged by the diversity of individual experience. Policy-makers should be sensitive to this diversity and modify cultural-competence efforts that are targeted too broadly.

Know Your Audience

• Culture and Medicine

• Hyperdiversity

• Immigrants and Refugees are not a monolithic group

• People, Principles and Practices: https://www.youtube.com/watch?v=_Mbu8bvKb_U

• CULTURAL Humility (complete documentary). https://www.youtube.com/watch?v=SaSHLbS1V4w

Immigration and Health

GLBH/ANSC 148. Class 7

Do Unauthorized Migrants Have a Right to Health?

• 150,000 migrants with no access for formal health care system in Israel due to their unauthorized status

• Suffered from “bio-inequality” due to their social exclusion, access to lowest status jobs with poor working conditions, and chronic stress due to perpetual threats of deportation

• Migrants had no “bio-legitimacy” in that they were neglected by the state due to their unauthorized status

• Bio-legitimacy:

• To be categorically excluded from the broader moral community of the nation such that you do not “deserve” the rights extended to citizens or authorized residents

Limited access to healthcare is compounded by the broader difficulties of living at the margins of society

Health inequality is thus connected to broader social inequality that migrants experience

Palestinians' citizens of Israel and refugees in occupied territories experience different forms of bio-legitimacy than do unauthorized labor migrants

“Dr. Peled was drawn to BZA because of its work in the OPT, she explained, and she “had never thought about ‘illegal’ foreign workers as a population needing help. Why do they deserve this? Palestinians, prisoners I understand—but why foreign workers? They choose to come here, right? My time is limited,” she continued defensively. “I’m not sure this is worth it.””

Refugee Anarchism in Exarchia Greece

• Bio-legitimacy denied to Middle Eastern and African refugees in Greece

• Vehement discrimination and exclusion of refugee population leads to segregation into isolated slums

• In vacuum of state support myriad forms of resistance, resilience, and maladaptive coping arise

Migrant Right to Health in the United States

• Similar system of tiered rights exist for migrants in the United States

• Subsidies for health insurance under the Affordable Care Act are not available to unauthorized migrants in the United States, but they are for certain classes of Refugees, Asylees, and Vulnerable Populations

• Emergency Medical Treatment and Labor Act (EMTALA) enacted in 1986 only guarantees access to emergency medical treatment for all regardless of citizenship or immigration status

• Unauthorized migrants view health institutions as potential arms of the state and may avoid seeking needed treatment in order to protect themselves from deportation

• Prop 187 in California denied wide range of social services to unauthorized migrants in the 1990’s

Migrant Right to Health in the United States

• Marrow and Joseph: Excluded and Frozen Out

• Affordable Care Act expanded health insurance to millions of Americans but specifically excluded immigrants without authorization

• This exclusion reflects and strengthens distinctions of moral deservingness between individuals legally present in the country and those that are not

• Subnational political districts have tried to blur this moral distinction and find ways to extend care to unauthorized migrants — however, they are often thwarted by Federal law

San Francisco: City funded “universal” health clinic provide primary care without need to verify immigration status or ensure ability to pay

Massachusetts: State “Health Safety Net” program enables access to care at FQHC’s for all low-income residents regardless of immigration status

Getting Care at FQHC’s

Access to care varies greatly by state

Massachusetts one of the most generous states for immigrants seeking health care services, yet access is not robust.

Confusing and contradictory rules, variation by facility in how much energy is spent to find coverage for immigrant patients

Providers avoid inquiring about immigration status

Payment is offered via “sliding fee” system that makes care affordable

Immigration Status Controls Eligibility

• Qualified Immigrants in MA receive same benefits as citizens

• Legal Permanent Resident (LPR) for 5+ Years

• LPR for less than 5 years, but resident in the U.S. since 1996.

• Refugee or Asylee status

• Victim of human trafficking

• Victim of domestic violence

• U.S. Military member or family of service member

• Some immigrants from certain countries such as Haiti, Cuba, others, with automatically considered Qualified Immigrants

• Special Status / PRUCOL in MA receive limited version of benefits

• – Permanently Residing Under Color Of Law

• Under stay of deportation for humanitarian reasons

• DREAM Act eligible youth under deferred action order

• Applicants for Refugee or Asylee Status

• Continuous residence in U.S. since 1972

• Applicants for Permanent Legal Resident Status

Immigration Status Controls Eligibility

• People Living in Massachusetts without immigration papers may be able to get public health services

• Mass Health Limited is for children, parents, pregnant women, disabled people, and elderly people with low incomes

• Health Safety Net is for people with low incomes

• Children’s Medical Security Plan is for children (18 or younger) whose family has a low income

• Healthy Start Program is for pregnant women with low incomes

Are Immigrants a Health Burden?

• Immigrants, and especially undocumented immigrants, spend less on healthcare than other groups of Americans

• Immigrants contribute more into the system (Medicare) than they take out

• People with health insurance and a usual source of care require less care over time

• May be more economical to include immigrants in new health reform programs rather than pay more to reimburse hospitals for uncompensated care

• If these facts are generally true, why is the perception so strong that immigrants are such a burden to the health care system?

Immigrant Health Care Experiences

• Unauthorized immigrants have a difficult time accessing care due to the complexity of rules that govern access

• Cultural-linguistic barriers

• Fear

• Difficulty navigating the process of care from the inside

Health for all, including refugees and migrants

• https://www.youtube.com/watch?v=EfNt-hVPtFU

• How can Global Health provide care in these “Zones of Abandonment?”

• What are some of the consequences of the health disparities experienced by migrant populations?

• How can we address the lack of bio-legitimacy in the world?