Infections and Inequalities: The Modern Plaguesby Paul Farmer
Paul Farmer has battled AIDS in rural Haiti and deadly strains of drug-resistant tuberculosis in the slums of Peru. A physician-anthropologist with more than fifteen years in the field, Farmer writes from the front lines of the war against these modern plagues and shows why, even more than those of history, they target the poor. This "peculiarly modern inequality" that permeates AIDS, TB, malaria, and typhoid in the modern world, and that feeds emerging (or re-emerging) infectious diseases such as Ebola and cholera, is laid bare in Farmer's harrowing stories of sickness and suffering.
Challenging the accepted methodologies of epidemiology and international health, he points out that most current explanatory strategies, from "cost-effectiveness" to patient "noncompliance," inevitably lead to blaming the victims. In reality, larger forces, global as well as local, determine why some people are sick and others are shielded from risk. Yet this moving account is far from a hopeless inventory of insoluble problems. Farmer writes of what can be done in the face of seemingly overwhelming odds, by physicians determined to treat those in need. Infections and Inequalities weds meticulous scholarship with a passion for solutions—remedies for the plagues of the poor and the social maladies that have sustained them.
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Infections and Inequalities
The Modern Plagues
By Paul Farmer
UNIVERSITY OF CALIFORNIA PRESSCopyright © 1999 The Regents of the University of California
All rights reserved.
The Vitality of Practice
ON PERSONAL TRAJECTORIES
One learns, I would hope, to discover what is right, what needs to be righted—through work, through action.
DANIEL BERRIGAN, 1971
As I prepared this book, an anonymous reviewer of an early draft suggested that, since the book reflects a personal journey, it should make explicit the itinerary taken. The idea of a confessional cast to a book about the plagues of the poor made me shudder, at least initially. But it is nonetheless true that my experiences in Peru and, especially, in Haiti have shaped my interpretations every bit as much as has training in anthropology and medicine.
Curiously, perhaps, I knew early—at twenty years of age, before I went to Haiti—that I wanted to be a physician-anthropologist. But my experience in central Haiti helped me decide what kind of medicine to practice. In my first year there, I witnessed preventable deaths from malaria, tuberculosis, and postpartum infections. That was enough to make me decide to specialize in infectious disease. Haiti also strengthened my interest in social theory, particularly in the relationship between structural constraints and personal agency. How do life conditions restrict any individual's capacity to make choices? The constraint part of the formula was critical, for poverty was the central fact of life for the Haitians with whom I lived and worked. It seemed at times as if their every move was trammeled by the hard surfaces of economic want. "Life for the Haitian peasant of today," observed anthropologist Jean Weise over twenty-five years ago, "is abject misery and a rank familiarity with death."
Accordingly, lack of access to effective biomedical services was the most salient feature of the Haitian health system. The country had only one medical school, and its graduates usually sought to remain in Port-au-Prince after graduation—or, better yet, to leave Haiti altogether. In the decade following the ascent of Dr. François Duvalier to power, for example, 264 physicians graduated from the state medical school, and all but 3 left the country. In the eighties, Haiti's nationwide physician-to-population ratio was 18 physicians per 100,000 inhabitants, compared to 250 physicians per 100,000 in the United States—and 364 per 100,000 in neighboring Cuba. This figure varied substantially between the country's four administrative districts. The Haitians whose stories are presented in this book live in the Région Transversale, which is by far the most underserved region, with about 5 physicians per 100,000 inhabitants. That made me, from the time I was a medical student, something of a novelty in rural Haiti.
By the spring of 1984, a year after my arrival, I'd cast my lot with a group of landless peasants who were working with a dynamic Haitian priest. He knew nothing about health care, he told me. Since I was going to be a doctor—he never evinced much interest in my anthropology studies—it would be my job to oversee health-related projects. So get cracking, he said; find the necessary resources. Wouldn't it be better, I objected, to conduct a preliminary "needs assessment" of the region, one that would ask those living in the communities to be served what they'd like to see come from our efforts? "Fine," replied the priest. "Do as you wish. But they're just going to tell you they want a hospital."
He was right. Although they also mentioned schools and water and land, most people surveyed said that a hospital was what the region needed. (Notably, we never heard requests for research.) Although we knew better than to wait to hear demands for, say, vaccinations against tetanus and measles, we decided to act as if we meant it when we insisted that their opinions mattered to us. At the same time that we sought to establish preventive services, we built a clinic.
Founded in 1985, the Clinique Bon Sauveur has since served the rural poor of Haiti's Central Plateau. My experiences there further shaped my medical interests. Within a year of opening the clinic, we saw our first case of AIDS, in a young man who presented with disseminated tuberculosis. His drama became mine too, since no one knew, really, what was going on, and I, a physician-in-training, was often the most "medical" person around. Manno became a central figure in my dissertation and the book it engendered—and forced me to come to terms with the nature of my own involvement in the lives of my "informants." My priority, I knew, was not analytic; it was pragmatic.
From the early eighties, I commuted between Haiti, with its dearth of medical services, and Harvard, where there were innumerable doctors and veritable thickets of hospitals. The experience has been jarring, certainly, but also illuminating. Haiti became a sort of interpretive grid for what I was hearing in medical school. First, I paid special attention to information that would be useful there—and soon became aware of a striking lack of interest in tuberculosis and parasitology on the part of U.S. academic medicine. Second, my experience in Haiti made me skeptical of certain claims of causality. I found precious little discussion of how poverty affects disease distribution and outcome and virtually no mention of the pathogenicity of social inequality. Even in social medicine classes, which did discuss social forces, much of the debate did not ring true for me.
The people I'd been working with in Haiti, hungry and sick, were completely absent from consideration and so, of course, was their plight. For example, we heard and read of enormous resources poured into "technological fixes," such as neonatal intensive care units, that yielded, in the view of some, few discernible results. Critics of the status quo, including many public health activists, seemed content to call for less funding for these fixes and more for the interventions of their choice (which were usually "low-tech" and grounded in preventive medicine).
I knew that Harvard Medical School was merely a brief airplane ride away from a setting in which markedly unheroic interventions would indeed have been lifesaving. But didn't the dilemmas of the Haitian sick call for a full range of high-tech and low-tech interventions? Why, I wondered anxiously, was it so manifestly impolitic, in Harvard's rarefied circles, to press for the former as well as the latter? Certainly the people of central Haiti were not specifically requesting low-tech solutions for their grave medical problems. When asked what they wanted, they had replied unhesitatingly, "A hospital." Not a clinic, a health post, or a dispensary. Not vaccines or prenatal care. They wanted a hospital.
Although experiences in Haiti made me a fairly discerning consumer of the literature on medical futility, it slowly became clear that I'd been taken in by some of the pieties of development work. Talk of "appropriate technology" and "sustainability" had sounded good to me, at least initially. The problem was that these sounded silly, even sinister, to the landless peasants with whom I worked and to many of their staunchest advocates. Early in my stay in Do Kay, during a year of transformative experiences, I ran head-on into the fundamental disjuncture between "expert views" on these matters (as promulgated, for example, in scholarly journals and in schools of public health) and the views of those whose commitment was to more radical changes in the circumstances endured by the poor.
Take an exchange between myself and the aforementioned Haitian priest, who had for decades devoted himself to improving the lot of the rural poor. It was late 1984, and I had returned to the Central Plateau after months away in medical school. The priest was anxious to show me the new latrines they'd built in the village. The latrines were made of cement; they were solid and square and tin-roofed, and they looked faintly incongruous next to the thatched and lopsided shacks in which so many of the villagers lived.
Unwisely, I asked whether the latrines were really "appropriate technology" for such a poor village. The priest was furious. "Do you know what 'appropriate technology' means?" he finally answered. "It means good things for rich people and shit for the poor." He wheeled away, fuming, and refused to speak to me for a couple of days.
With the help of my (sometimes stern) Haitian hosts, I've since come to believe that the hypocrisies of development are not only morally flimsy but in fact analytically shallow. Many of the positions advanced in the development field are underpinned by a zero-sum approach: only exceedingly limited funds are available for "sustainable" projects, goes this logic, and so those who work for the poor must choose between, say, high-tech interventions and preventive services. Such Luddite critiques of technological advancement treat poor villages like Do Kay as if they were cut off from the rest of the world.
I knew, however, that we were living not in two different worlds but in the same world. This was brought home repeatedly on an experiential level by the brevity of my trip back to Miami. More to the point, it was brought home on an analytic level by actually taking the trouble to study the historical record. The truth was that Do Kay was a squatter settlement of self-described "water refugees." Their misery had begun, they said, when a U.S.-financed hydroelectric dam, itself the centerpiece of a "development project," flooded the valley where they had farmed for years. The project had been signed into existence in Washington, D.C.
To better understand the Harvard-Haiti axis, I turned to anthropology. Although my mentors were mostly engaged, at the time, in symbolic anthropology, they encouraged me to read widely. I found what's known as "world-systems theory" to be exceedingly helpful as I attempted to simultaneously complete medical school and a doctorate in anthropology. Perhaps less a theory than a call for analytic rigor, the world-systems approach was a challenge to ferret out connections. Reading the works of Immanuel Wallerstein, Sidney Mintz, and Eric Wolf was invigorating as I explored the historical links between Haiti and the United States. In addition, studying these connections and their construction over time wasn't a bad way to learn to think about a new epidemic caused by an intracellular organism. Other illnesses then said to be "emerging" or "reemerging" were clearly caught up in these same transnational systems. Laurie Garrett, whose excellent book The Coming Plague contains an ominous forecast, puts it this way:
Rapid globalization of human niches requires that human beings everywhere on the planet go beyond viewing their neighborhoods, provinces, countries, or hemispheres as the sum total of their personal ecospheres. Microbes, and their vectors, recognize none of the artificial boundaries erected by human beings. Theirs is the world of natural limitations: temperature, pH, ultraviolet light, the presence of vulnerable hosts, and mobile vectors.
AIDS, I learned through research, brought connections, not discontinuities, into relief. In the midst of this quest for connections, I was becoming disenchanted with a certain type of disconnected anthropology. This brand of inquiry had as its goal the search for "thick" local meaning unhinged from history and political economy. In rural Haiti, nothing much seemed unhinged from history and political economy; the connections, historically deep and geographically broad, came into view with minimal effort.
If my experience there estranged me from static cultural analyses, AIDS drove a final nail in the coffin. When Nancy Scheper-Hughes wrote about "the mountain of uninspiring social science literature on AIDS, a morass of repetitive, pious liturgies about stigma, blaming, and difference," I knew just what she meant. During the years of my training, anthropology joined the other social sciences in carving out "turf" in the study of AIDS, and there followed a spate of disconnected studies of "cultural" phenomena related, in one way or another, to AIDS. Very often, these phenomena were much more tightly linked to poverty and inequality than to the specific culture in question—a classic example of the conflation of structural violence and cultural difference.
What claims did this mountain of literature make? What functions did it subserve? For what audiences was it written and disseminated? What canonical concerns framed this inquiry so that certain "cultural" exotica would be sharply in focus while other considerations—poverty and inequality and the feckless, sometimes deadly policies of the powerful—rarely appeared in the frame of analysis? Work on AIDS and tuberculosis posed such questions forcefully and often.
I soon learned that scholars trained in different disciplines could examine the very same topic (the spread of HIV, say, or the reason why millions die of a disease as treatable as tuberculosis) and come up with altogether incompatible conclusions. What's more, these scholars could advance such completely discrepant assessments with great confidence. These "immodest claims of causality" became one of my central interests, even though such inquiry was generally viewed as more appropriate to the sociology of knowledge than to either anthropology or medicine. To explore these causal claims, one needed to regard as cultural artifacts not only the popular press but also the scholarly journals. My doctoral dissertation, subsequently published as AIDS and Accusation (1992), claimed to be an interpretive ethnography accountable to history and political economy and informed by a critical epidemiology. I also tried to tackle many of the sociology-of-knowledge questions that had arisen as the scientific and medical communities scrambled to make sense of AIDS.
Immodest claims of causality/the hypocrisies of development, crazy theories about the origins of AIDS, and other ideologies posing as analysis—all were run through the interpretive grid that grew out of these travels along the Harvard-Haiti axis. But what sounds like some great intellectual adventure was in fact often painful. A mountain of doctoral dissertations would not, I suspected, allay the awful suffering I'd witnessed in Haiti. And things were going from bad to worse. Medical services for the people I'd come to care about were simply not "cost-effective" in the increasingly dominant framework of neoliberalism; nor were their proposed projects, however modest, sustainable according to the criteria imposed by the development set that at times seemed to be running Haiti.
And yet health care for the poor struck me, early on, as the noblest goal a physician could have. The unarguable immediacy of their needs, and the vitality of practice of those seeking to meet them, was sufficient rejoinder to both the uninspiring social science and the ultimately punitive policies favored by the burgeoning development bureaucracies.
Where was I going to work, if I found existing institutions, or at least their confidently advanced ideas, so distasteful? By the time I'd started asking these questions, I'd struck up with Jim Yong Kim. We shared more or less the same academic background and the same concerns. What were we to make of our "ridiculously lavish educations," we who had received so much?
Staying put in Boston was not an option, not after all we'd seen. World-systems theory, perhaps, helped us to see people like ourselves, with one foot in Harvard and another in Haiti, as possible conduits for resources. These conduits would have valves that could lead resources to flow against the current, back to the poor communities we had studied. This was a moral commitment, certainly, but careful analysis seemed to lead to the same conclusions. Understanding AIDS called for a systemic approach, so why shouldn't responses to such diseases be transnational and, given the transnational nature of HIV's spread, make a claim on a commensurate share of the world's wealth? Business was conducted globally; so was U.S. foreign policy—often with disastrous results, if outcomes among the poor are deemed in any way important to an assessment of such policies. Why not medicine?
Jim Kim and I, working largely with friends from outside the academy, felt sure that our own quest for the vitality of practice needed to be transnational, rooted in social justice (we followed liberation theology in making a "preferential option for the poor"), and informed by what we'd learned at Harvard and in Haiti. We proceeded in precisely this manner, even though we never assumed, initially, that our projects would matter much to the academic community that had nourished us so unstintingly. We were wrong on that score.
PRAGMATIC SOLIDARITY IN HAITI
To do this work—which we termed, rather grandly, "pragmatic solidarity"—we first established two organizations: Zanmi Lasante, a community-based organization in Haiti led by the priest and his coworkers; and Partners in Health, a Massachusetts-based, nongovernmental organization with a mission to remediate inequalities of access to health care. In the intervening decade, we've been able to provide services to hundreds of thousands of people, almost all of them living in poverty.
Excerpted from Infections and Inequalities by Paul Farmer. Copyright © 1999 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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Meet the Author
Paul Farmer directs the Program in Infectious Disease and Social Change at the Harvard Medical School and divides his clinical time between Boston's Brigham and Women's Hospital and the Clinique Bon Sauveur in central Haiti. He is the author of AIDS and Accusation (California, 1992), which was awarded the Wellcome Medal, and The Uses of Haiti (1994), and editor of Women, Poverty and AIDS (1996), which won the Eileen Basker Prize.
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Like all of Paul Farmer's books he speaks with the authority of one who lives what he preaches. His experience as an anthropologist and clinician enable him to give a unique perspective on the position of the poor in the world. Infections and Inequalities makes you want to put down the book and get to work helping the forgotten. Great book, as always, from Farmer.