Never Again? Reflections on Human Values- Paul Farmer
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Never Again? Reflections on Human Values
and Human Rights
Paul Farmer
The Tanner Lectures on Human Values
Delivered at
University of Utah
March 30, 2005
Paul Farmer is a founding director of Partners In Health, an in-ternational charity organization that provides direct health care services and undertakes research and advocacy activities on behalf of those who are sick and living in poverty. He is also Presley Professor of Medical Anthropology in the Department of Social Medicine at Harvard Medi-cal School, attending physician in infectious diseases and associate chief of the Division of Social Medicine and Health Inequalities at Brigham and Women’s Hospital in Boston, and medical director of the Clinique Bon Sauveur in Haiti. He was educated at Duke University and received his M.D. and Ph.D. from Harvard University. He is the recipient of the Margaret Mead Award from the American Anthropological Asso-ciation, the American Medical Association’s Outstanding International Physician (Nathan Davis) Award, and the Heinz Humanitarian Award. He was also awarded a acArthur Foundation “genius award” and is the subject of Tracy Kidder’s Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, A Man Who Would Cure the World. His numerous pub-lications include AIDS and Accusation: Haiti and the Geography of Blame (1992); The Uses of Haiti (1994); Infections and Inequalities: The Modern Plagues (1998); and Pathologies of Power: Health, Human Rights, and the New War on the Poor (2003).
To designate a hell is not, of course, to tell us anything about how to extract people from that hell, how to moderate hell’s flames. Still, it seems a good in itself to acknowledge, to have enlarged, one’s sense of how much suffering is caused by human wickedness there is in the world we share with others. Someone who is perennially surprised that depravity exists, who continues to feel disillusioned (even incredulous) when confronted with evidence of what humans are capable of inflicting in the way of gruesome, hands-on cruelties upon other humans, has not reached moral or psychological adulthood. No one after a certain age has the right to this kind of innocence, of superficial-ity, to this degree of ignorance, or amnesia.
Susan Sontag, Regarding the Pain of Others
1. Preliminaries
It is with no small amount of trepidation that I seek to reflect on “human values” as a Tanner lecturer. This trepidation comes in part from the usual sources. Because all humans have values, to claim expertise in the universal arena of value-making is necessarily a perilous activity. Argu-ments abound. Are some values truly universal, the products of growing up in a human body and within a human family of some sort or another? Or are all human values socially constructed, with no real bedrock but that we create through culture? Aren’t all values by definition human? Many ethologists and sociobiologists dispute this last point fiercely.
We are not here to join in these disputes, except to the extent that they contribute to certain human rights debates. I say “we” because this lecture will consider how photographs and stories may be used to spark reflection on human, and humane, values. And chastened by Susan Sontag’s admonition that “no ‘we’ should be taken for granted when the subject is looking at other people’s pain,” I note at the outset that
Writing an essay is necessarily trial and error, and I’ve had steering, in completing this Tanner Lecture, from Jennie Weiss Block, Wayne Cavalier, Deogratias Niyizonkiza, Beth Collins, Nancy Dorsinville, Agnès Binagwaho, and Isabella Harty-Hugues. I am especially grateful to David Walton, who is as good a photographer as he is a physician, and to Haun Saussy and Barbara Rylko-Bauer, who have, over the years, helped me to think through these difficult topics. Alice Yang provided, as ever, careful editing of both content and style.
. Susan Sontag, Regarding the Pain of Others (New York: Farrar, Strauss, and Giroux, 2003), p. 114.
. Sontag, Regarding the Pain of Others, p. 7.
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these are stories that belong to other people, not to me; the photographs were taken by me and by other physicians working with Partners In Health, a nongovernmental organization seeking to put into practice those human values that support the belief that health care should be viewed as a human right. Partners In Health has worked in rural Haiti for many years; we have also had the privilege of caring for patients in places as far-flung as Peru, Siberia, and Rwanda.
In the course of doing this work, we’ve learned a great deal about how best to deliver medical care to the very poorest, to prisoners, and to the victims of violence. This work has also taught us that those seeking to serve such patients must know something about human rights. We’ve learned, for example, that there is no single coherent “human rights movement,” but rather heterogeneous groups of people with very dif-ferent conceptions of how rights are related to values; these groups have different conceptions of how human rights and values should come into play, particularly in the course of responding to the problems of persis-tent poverty and inequality, violence, and even epidemic disease.
This diversity of opinions and our own experience working among the destitute sick have also forced us to consider the following ques-tions: should access to health care be considered a human right? If so, what kind of right is it? What is the relationship between social condi-tions and human rights? Answers to these questions are much contested within various human rights movements. There are reasons why some who do not live in poverty—for example, people who give or read lec-tures such as this one, and those who write about rights—do not always wish to see an analysis of poverty and inequality figure centrally in de-bates about human values and human rights. One reason is that the affluent share a single world with the poorest, just as the violent share a world with victims of violence and the healthy share a world with the sick. In Regarding the Pain of Others, Sontag explores human values and human rights and also the role played by photographs, reminding us that viewer and victim share the same time and space: “Being a spectator of calamities taking place in another country,” she warns, “is a quintes-sential modern experience.” But the notion that we belong to different worlds—the first and third, for example—is an illusion, one that can be conjured or shattered by photographs and stories, depending upon the
. Partners In Health is described in chapter 1 of my book Infections and Inequalities (Berkeley: University of California Press, 1999) and also on a website, www.pih.org.
. Sontag, Regarding the Pain of Others, p. 18.
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ways in which they are presented. Sontag exhorts us that “to set aside the sympathy we extend to others beset by war and murderous politics for a reflection on how our privileges are located on the same map as their suffering, and may—in ways we might prefer not to imagine—be linked to their suffering, as the wealth of some may imply the destitution of others, is a task for which the painful, stirring images supply only an initial spark.”
Proximity and connections are often the subtext of current-day dis-cussions of “globalization,” and these discussions, too, bring their own arcane debates. In this lecture we will reflect on extreme suffering as it occurs in this global web of hidden connections. If we are located on the same map as the suffering of others, how do we describe the fact that some of us are shielded from violence and epidemic disease while others are faced, from birth forward, with enormous risks? One way to trace this geography of unequal risk is to consider how “structural violence” is meted out to the poor in myriad ways. I’ve traced the history of the concept elsewhere. In the 1960s, Latin American liberation theologians used the term broadly to describe “sinful” social structures character-ized by poverty and by steep grades of social inequality, including rac-ism and gender inequality. If sinful social structures are seen as created and sustained more by the powerful than the powerless, it’s possible to argue that structural violence is violence exerted systematically—and, often enough, indirectly—by everyone who belongs to a certain social order: hence the discomfort these ideas provoke in a moral economy still geared to pinning praise or blame on individual actors rather than to revealing how social arrangements create danger, disease, and death.
Like any social concept, structural violence falls short of encompass-ing the complexity and the messy contradictions of the real world in all its real violence. For this reason, and others, the term is not without its detractors even among people who recognize the problem and the need to remedy it. Just as everyone seems to have his or her own definitions of “structure” and “violence,” so too does the term “structural violence” cause epistemological jitters among those who study social process (it is not an expression I’ve heard used in human rights debates, where it would be most useful). Scholars I much admire have taken me to task for relying on a concept that does too little to parse very different kinds of violence. Responding to a lecture I delivered in 2001, the sociologist Loïc Wacquant offered the following critique:
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…the category of “structural violence” conflates full-fledged domi-nation with mere social disparity and then collapses forms of violence that need to be differentiated, such as physical, economic, political, and symbolic variants or those wielded by state, market, and other social entities. Nothing is gained by lumping under the same head-ing “steep grades of social inequality, including racism and gender inequality,” that may operate smoothly with the consent of the sub-ordinate with, say, wife beating and ethnic rioting or “brute poverty” with, say, military invasion and genocidal policies.
Wacquant concludes that “structural violence may be strategically use-ful as a rhetorical tool, but it appears conceptually limited and limiting, even crippling.” I take Wacquant’s critique to heart, in part because he is correct in calling for more carefully parsed descriptions and analyses of suffering and in part because he is correct to underline the role of such a concept as a rhetorical tool. But aren’t rhetorical tools necessary if we seek to lessen violence in all its forms? Isn’t that what photographs and personal narratives often are, rhetorical tools, when the topic is human values and human rights? How do we bring suffering into relief in a manner that would spur into action those who could change the unfair arrangements that increasingly characterize the world in which we live?
Still, no amount of rhetorical effectiveness can shout down the con-ceptual and analytic issues. There are, to be sure, many kinds of violence, and a term that attempts to bridge the social (including the historical and economic), the psychological, and the biological without making the necessary distinctions may both create an unwanted black box in the place of human motivations and leave us no way of measuring the de-grees, assessing the kinds, and forecasting the consequences of violence and rights violations. Even if, descriptively, it makes sense to say that
. Loïc Wacquant, Comment on “An Anthropology of Structural Violence” by Paul Farmer, Current Anthropology 45 (2004): 322. The lecture and criticisms of it offer a detailed bibliography that readers of this essay may wish to consult. A helpful anthropological reader on violence has been assembled and edited by Nancy Scheper-Hughes and Philippe Bour-gois (Violence in War and Peace [Malden, Mass.: Blackwell, 2004]) and a previous Tanner lecturer, Arthur Kleinman (“Experience and Its Moral Modes: Culture, Human Condi-tions, and Disorder,” in The Tanner Lectures on Human Values, Vol. 20, ed. Grethe B. Petersen [Salt Lake City: University of Utah Press, 1999], pp. 357–420), has devoted much of his ca-reer to exploring this topic. I am of course deeply indebted to these colleagues, and especially to Arthur and Joan Kleinman’s essay about the representation of suffering: Arthur Kleinman and Joan Kleinman, “The Appeal of Experience; the Dismay of Images: Cultural Appropria-tions of Suffering in Our Times,” in Social Suffering, ed. Arthur Kleinman, Veena Das, and Margaret M. Lock (Berkeley: University of California Press, 1997), pp. 1–24. See also Arthur Kleinman’s What Really Matters: Living a Moral Life Amidst Uncertainty and Danger (New York: Oxford University Press, 2006).
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societies built on deep inequality consist of wall-to-wall structural vio-lence, such an analysis leaves us at a loss for prescriptions and for ways to distinguish legitimate from illegitimate force.
I wish to do a better job of parsing the concept of structural vio-lence and cataloguing its many forms and also of promoting the human values that might lessen the toll taken by the violence and disease that are so tightly bound to poverty and social inequalities. I’d like to reflect on “strategically useful rhetorical tools,” too. These are tasks best ap-proached humbly, which is why so many questions will be raised in this lecture.
Part of my difficulty in making sense of violence stems, no doubt, from my experience working as a physician in settings of great poverty. The physician’s task is to serve the sick; medicine is more a vocation than an analytic discipline. But many doctors know a great deal about structural violence. Violence in one form or another is often enough the force that propels people into our clinics’ waiting areas; violence, which we have little difficulty in tracking to its sources, often interrupts or frustrates the job of identifying and remedying disease.
In this lecture, I will explore how structural violence is embodied as epidemic disease, violations of human rights, and genocide and reflect on the ways in which stories and images may be used to convey the damage done by structural violence. I will also explore the limitations, often sharp, of stories and images whenever we seek, to use Sontag’s words, “to moderate hell’s flames.” In raising questions about rights and values, and in contemplating images and stories revealing the structural violence that today claims millions of young lives, we revisit a number of the human values that Obert Tanner and others had in mind in estab-lishing this lecture series.
. An earlier book of mine, Pathologies of Power (2003), spurred a reviewer to ask sharp questions about my understanding of everyday violence:
Farmer never blames the poor for their poverty or the sick for their sickness. Clinical habits and the clinical-ethical tradition that has produced and is honored by those habits make any such blaming unlikely. Nonetheless, Farmer relates story after story in which misery has been made at home, made by neighbors, made by kin, made in cultures grown tolerant of cruelty. Thus is pulled a punch in this book that pulls no other, and thus is made a tension Farmer cannot himself gracefully resolve. (Robert H. Sprinkle, Review of
Pathologies of Power: Health, Human Rights, and the New War on the Poor by Paul Farmer, Journal of the American Medical Association 292 [2004]: 631–32)
I see the reviewer’s point, although I’m pretty sure he saw mine too. Blaming the victim is no hobby of mine, though removing all responsibility from victims who may also be per-petrators is hardly more charitable. In any case, my task here is to understand how various types of violence are linked and how they feed on each other.
. Sontag, Regarding the Pain of Others, p. 14.
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2. Epidemic Disease as Structural Violence
It was the philosopher Emmanuel Levinas who observed—and I’m just paraphrasing here—that ethics precedes epistemology. Our responsi-bility to each other precedes and grounds our duty to discover the truth. But where does ethics start? What makes a problem an ethical problem, as opposed to a merely technical or public-relations one?10 Can ethical thinking assume the willingness to act ethically? Do theory and rhetoric lead to action? Since these questions too have been argued for ages, I will start in what is, for me, an uncontentious arena: the medical and public health challenges before us right now.
The control of epidemic disease may seem an unlikely place to start in discussing human values, but the numbers are telling. Even if we consider only the big three infectious killers—AIDS, tuberculosis, and malaria—we are faced with tens of millions of preventable deaths slated to occur during our lifetimes. A recent document from the United Nations suggests, for example, that more than 80 million Africans might die from AIDS alone by 2025.11 A similar toll will be taken, on that continent, by tuberculosis and malaria. Adding other infectious killers to the list, the butcher’s bill totals hundreds of millions of premature deaths over the next century.
But these numbers have lost their ability to shock or even move us. What are the human values in question when we hear, and fail to react to, the news that each day thousands die of these maladies unattended?
. Theologian Wayne Cavalier writes:
…because it is the primordial encounter with the other upon which our subjective being is predicated, we therefore owe our being to the other. Therefore, our moral indebtedness to the other is prior to our being, and it is the being as subject who “knows.” …Another way to put it: the encounter with the other gives rise to the subject; therefore, our indebt-edness to the other is at the very root of being. Epistemologically, this encounter and its consequences are the foundations of knowing. This radically changes the understanding of knowing from a process of absorbing the unknown into the subject to the fact of be-coming through the primordial encounter with the other. This changes the understand-ing of knowledge, understood from the prior ethical or moral indebtedness that brings the subject (usually understood as the knower) into being as a coming near, an encounter with extreme ethical consequences. (personal communication, July 22, 2005)
10. Elsewhere we have argued that contemporary medical ethics focuses on certain challenges (defining brain death, say, or the ethics of stem cell research) while ignoring oth-ers (lack of access to care for those living in poverty). See Paul Farmer and Nicole Gastineau Campos, “Rethinking Medical Ethics: A View from Below,” Developing World Bioethics 4 (2004): 17–41.
11. Joint United Nations Program on HIV/AIDS, AIDS in Africa: Three Scenarios to 2025 (Geneva: UNAIDS, 2005). One hopes and expects, of course, that the toll will be much lower. But the report outlines three plausible scenarios of the African HIV/AIDS epidemic over the next twenty years based on the current actions of the global and African communi-ties; all three scenarios—a “best-case situation,” a “middle-case” condition, and a “dooms-day scenario”—warn that “the worst…is still to come” (p. 20).
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Where, in the midst of all of these numbers, is the human face of suffer-ing? Can the reader discern the human faces in these reports? A failure of imagination is one of the greatest failures registered in contemplating the fate of the world’s poorest. Can photographs and personal narratives play a role, even as rhetorical tools, in promoting those human values that might lessen the magnitude of these disasters?
The strategy of countering a failure of imagination by having readers see the face of suffering is an old one in human rights struggles, as old at least as the eighteenth-century antislavery movement. Images, stories, and first-person testimony—rhetorical strategies or documentation or both?—remain the most relied-upon means of rendering these abstract struggles personal. Personalizing human suffering can help to make rights violations “real” to those unlikely to suffer them. Sometimes the challenge is to use narrative and imagery to shift the issue from “preserv-ing my rights” to “defending the rights of the other person.”
Sontag has written compellingly of the minefields one must traverse to use vivid images relating the pain and suffering of others. Writing of famine, genocide, and AIDS in Africa, she warns that the photographs “carry a double message. They show a suffering that is outrageous, un-just, and should be repaired. They confirm that this is the sort of thing which happens in that place. The ubiquity of those photographs, and those horrors, cannot help but nourish belief in the inevitability of trag-edy in the benighted or backward—that is, poor—parts of the world.” 12 The same critique has been leveled at the use of personal narratives.
In this lecture, as noted, the ethics of responding to the large-scale misery still rife in the modern world will precede the epistemological issues. And to prevent us from assuming that these tragedies are in-evitable, we turn to the experience of a young Haitian man who lay dying of AIDS and tuberculosis only a year or two ago. The story of his illness, and also of his failure to die, offers us a chance to consider the role human values play in confronting what is surely one of the greatest moral challenges of our times: addressing, through medicine and public health, inequalities of risk and outcome that have grown as steadily as has the gap between the richest and the poorest.13
12. Sontag, Regarding the Pain of Others, p. 71.
13. I have explored the growing gap between rich and poor and its relationship to epi-demic disease and violence in Infections and Inequalities and Pathologies of Power (Berkeley: University of California Press, 2003). A new book by Jeffrey Sachs, The End of Poverty (New York: Penguin, 2005), offers an economist’s view of this gap and its growth over the past three centuries; he also engages current debates among development economists. See also Jim Yong Kim, Joyce V. Millen, Alec Irwin, and John Gershman, eds., Dying for Growth: Global Inequality and the Health of the Poor (Monroe, Maine: Common Courage Press, 2000).
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Figure 1. Joseph shortly after his diagnosis of AIDS and disseminated tuber-culosis and prior to therapy (photo by David Walton).
On the afternoon of March 17, 2003, four men appeared at the pub-lic clinic in Lascahobas, a town in central Haiti; each carried one corner of a makeshift stretcher. On the stretcher lay a young man, eyes closed and seemingly unaware of the five-mile journey he had just taken on the shoulders of his neighbors. When they reached the clinic after the four-hour trip, the men placed their neighbor, Joseph, on an examina-tion table. The physician tried to interview him, but Joseph was already stuporous. His brother recounted the dying man’s story.
Joseph, twenty-six years old, had been sick for months. His illness had started with intermittent fevers, followed by a cough, weight loss, weakness, and diarrhea. His family, too poor, they thought, to take him to a hospital, brought Joseph to a traditional healer. Joseph would later explain: “My father sold nearly all that he had—our crops, our land, and
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our livestock—to pay the healer, but I kept getting worse. My family barely had enough to eat, but they sold everything to try to save me.”
Joseph was bed-bound two months after the onset of his symptoms. He became increasingly emaciated and soon lost all interest in food. As he later recalled, “My mother, who was caring for me, was taking care of skin and bones.”
Faced with what they saw as Joseph’s imminent death, his family purchased a coffin. Several days later a community health worker, em-ployed by Partners In Health, visited their hut. The health worker was trained to recognize the signs and symptoms of tuberculosis and HIV and immediately suspected that the barely responsive Joseph might have one or both of these diseases. Hearing that their son might have one last chance for survival, Joseph’s parents pleaded with their neighbors to help carry him to the clinic, since he was too sick to travel on a donkey and too poor to afford a ride in a vehicle.
At the clinic, Joseph was indeed diagnosed with advanced AIDS and disseminated tuberculosis. He was hospitalized and treated with both antiretrovirals and antituberculous medications. Like his family, how-ever, Joseph too had almost lost faith in the possibility of recovery. He remembers telling his physicians, early in the course of his treatment, “I’m dead already, and these medications can’t save me.” Contemplating a photograph taken by Dr. David Walton as Joseph began his treatment (figure 1), one can understand readily why he had given up hope.
Despite his doubts, Joseph dutifully took his medications each day, and he slowly began to improve. Several weeks later, he was able to walk. His fevers subsided, and his appetite returned. After discharge from the hospital, he received what is termed “directly observed therapy” for both AIDS and tuberculosis, visited each day by a neighbor serving as an accompagnateur.14 After several months of therapy, Joseph had gained more than thirty pounds (figure 2).
14. Accompagnateurs are almost always neighbors of patients—some of them patients themselves—who accept responsibility for supervising daily care and support for people suffering from AIDS or tuberculosis; they are trained by Partners In Health staff and are the cornerstone of our projects in Haiti, Peru, Boston, Rwanda, and elsewhere. This strategy for treating AIDS in what are now termed “resource-poor settings” is described in a num-ber of papers in the medical literature. See, for example, Paul Farmer, Fernet Léandre, Joia Mukherjee, et al., “Community-Based Approaches to HIV Treatment in Resource-Poor Settings,” Lancet 358 (2001): 404–9; Paul Farmer, Fernet Léandre, Joia Mukherjee, et al., “Community-Based Treatment of Advanced HIV Disease: Introducing DOT-HAART (Di-rectly Observed Therapy with Highly Active Antiretroviral Therapy),” Bulletin of the World Health Organization 79 (2001): 1145–51; and Heidi L. Behforouz, Paul E. Farmer, and Joia S. Mukherjee, “From Directly Observed Therapy to Accompagnateurs: Enhancing AIDS Treat-ment Outcomes in Haiti and in Boston,” Clinical Infectious Diseases 38 (2004): S429–36.
Figure 2. Joseph after six months of AIDS and tuberculosis therapy (photo by David Walton).
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A couple of years later, Joseph frequently speaks in front of large au-diences about his experience. “When I was sick,” he has said, “I couldn’t farm the land, I couldn’t get up to use the latrine; I couldn’t even walk. Now I can do any sort of work. I can walk to the clinic just like anyone else. I care as much about my medications as I do about myself. There may be other illnesses that can break you, but AIDS isn’t one of them. If you take these pills this disease doesn’t have to break you.”
What sort of human values might be necessary to save a young man’s life? Compassion, pity, mercy, solidarity, and empathy come immedi-ately to mind. But we also must have hope and imagination in order to make sure that proper medical care reaches the destitute sick. Naysayers still argue that it is simply not possible, or even wise, to deliver com-plex medical services in settings as poor as rural Haiti, where preven-tion should be the sole focus.15 Joseph’s story answers their misgivings, I feel, both in terms of fact (you can successfully treat advanced AIDS in this setting, and because good treatment serves to strengthen prevention programs) and in terms of value (it is worthwhile to try to do so). Cer-tainly Joseph and his family would agree, as would thousands of other Haitians who have benefited from these services.
But is the story over? Are the human values of compassion, pity,
15. These debates continue. See, to cite but one very recent example, the assertions by Harvard-trained economist Emily Oster, who seems to argue against the provision of antiretroviral therapy to patients such as Joseph, claiming that “antiretroviral treatment is around 100 times as expensive in preventing AIDS deaths as treating other sexually trans-mitted infections and around 25 times as expensive as education” (“Treating HIV Doesn’t Pay,” Forbes [July 25, 2005] [online]). But these inputs are changing rapidly with time: over the past few years, we have seen an over 90 percent decline in the cost of antiretrovirals, and there is little agreement about the efficacy of current prevention methods and of edu-cational campaigns among the very poor—the victims of structural violence. While noting that “[i]t may be that we have an objective other than maximizing the efficiency of dollars spent,” Oster nevertheless hews to static cost-effectiveness analyses, given these changes and debates: “In my work I have assumed that our goal in the face of the epidemic is to maximize life. In other words, to save the most years of life with the funding available.” But why is funding the constant in this life-or-death equation when funding and the cost of inputs are poorly studied and rapidly changing? Nor is her analysis epidemiologically sound: while citing the importance of treating sexually transmitted infections in order to prevent HIV transmission, she fails to link the critical importance of treating HIV infection (itself a sexu-ally transmitted infection in most parts of the world) in order to prevent HIV transmission. Our experience in rural Haiti has shown that demand for HIV screening, a cornerstone of prevention efforts, is low as long as effective care remains unavailable. For more on the debate, see Paul Farmer, “Prevention without Treatment Is Not Sustainable,” National AIDS Bulletin (Australia) 13 (2000): 6–9, 40; my exchange with Edward Green explores some of these complexities (Edward C. Green, “New Challenges to the AIDS Prevention Paradigm,” and Paul Farmer, “AIDS: A Biosocial Problem with Social Solutions,” Anthropology News 44 [2003]: 5–7), as do Helen Epstein’s recent essays in the New York Review of Books (“God and the Fight Against AIDS,” 52, no. 7 [April 28, 2005]: 47–51; and “The Lost Children of AIDS,” 52, no. 17 [November 3, 2005] 41–46).
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mercy, solidarity, and empathy all there is to it? How might the notion of rights reframe a question often put as a matter of charity or compas-sion? Conversely, what happens when other human values come to play in settings of epidemic disease? What happens when the human values in question are selfishness, greed, callousness, resignation, or just plain lack of imagination?
We know at least one answer to these questions. The director of Part-ners In Health and I were in Kenya in January 2004 and visited, along the shores of Lake Victoria, a number of communities seemingly bereft of young adults. We had not met any poor Kenyans receiving antiretroviral therapy—to date the only effective means of treating AIDS—and were anxious to learn more about efforts to introduce it to the Lake Victoria region. This is one of the epicenters of the AIDS pandemic, and surveys of young adults over the past two decades indicate rates of infection that range upward of 30 percent.16 Many of those people infected are dead or dying—even now, well over a decade after the introduction of effective antiretroviral therapy. In some areas, kinship networks have been nearly overwhelmed: in certain villages, children of those who die of AIDS are placed in orphanages almost as often as they are placed among their extended families. These days we hear a lot about the need for compas-sion for AIDS orphans, who number in the millions in Africa alone, but what arrangements might have prevented their orphaning?
The medications that saved Joseph’s life are commodities available throughout the global economy to those who can pay for them, and this is no less true in Kenya than in any other place. The people who have died without a single dose of effective therapy over the past decade are, almost without exception, people who lived and died in poverty. In order to make sure that poor people dying from AIDS stop dying, it will be necessary to move beyond what Sontag referred to as the “un-stable emotions” of compassion or pity,17 to more stable arrangements for all those afflicted with this and other treatable diseases. Translating compassion, pity, mercy, solidarity, or empathy into policy or rights is a difficult task.
But it is not an impossible task. How might we draw on certain human values to promote the notion of a right to health care and spark the imagination? A subsequent visit to Kenya, a year after the first one
16. Joint United Nations Program on HIV/AIDS, Epidemiological Fact Sheets on HIV/ AIDS and Sexually Transmitted Infections: Kenya, 2004 (Geneva: World Health Organization, 2004). Available at www.unaids.org/EN/Geographical+Area/by+country/kenya.asp.
17. Sontag, Regarding the Pain of Others, p. 101.
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and again in the company of the director of Partners In Health, re-minded us of the power of photographs. This time, we were traveling with the head of mission of a large charity that had recently received a significant amount of funding for AIDS relief. “Treatment is impor-tant,” he remarked after a day of home visits, adding that he’d recently seen a before-and-after-treatment photograph of a man who he assumed was Kenyan, since these images appeared in a Kenyan newspaper. “The difference between the two photographs was extraordinary,” he added. It was clear that he’d been moved and it seemed, too, that he was in a position to do something about it—to translate his reaction to the photograph, however “unstable,” into interventions designed to save the lives of those already sick. The photographs, it turns out, were the same ones you see above. Joseph’s images had made it across the world from Haiti to Kenya.
Do the destitute sick of Haiti or Kenya ask for our pity and compas-sion? Often they do. But can’t we offer something better? The human values required to save one person’s life, or to prevent children in a single family from losing their parents, surely include pity and compassion, and those sentiments are not to be scorned. Often it is possible to save a life, to save a family. But “scaling up” such efforts requires a modicum of stability and the cooperation of policymakers and funders, them-selves unlikely to suffer the indignities of structural violence. Partners In Health has worked for a long time in a small number of settings, seeking to make common cause with local partners to establish long-term medi-cal projects that strengthen, rather than weaken, public health. This means strengthening what is termed “the public sector” rather than, say, other nongovernmental organizations like ours or private clinics and hospitals. Nongovernmental organizations themselves can and should strengthen the faltering public sector.18 We proceed in this manner be-cause we’ve learned that the public sector, however weak in these places, is often the sole guarantor of the right of the poor to health care. Our own efforts take seriously the notion of the right to health care and also to freedom from hunger, homelessness, illiteracy, and other problems encountered in settings of great poverty. Others involved in nongov-ernmental organizations are also learning these lessons when they seek to inspire projects by social justice and a rights framework rather than
18. David A. Walton, Paul E. Farmer, Wesler Lambert, et al., “Integrated HIV Pre-vention and Care Strengthens Primary Health Care: Lessons from Rural Haiti,” Journal of Public Health Policy 25 (2004): 137–58.
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by what Rony Brauman of Médecins Sans Frontières has termed “the politics of pity.” 19
To move from pity and compassion for a sufferer like Joseph—a young man with a story, a face, and a name—to the values inherent in notions of human rights is a long leap. For many, especially those far removed from conditions such as those faced in rural Haiti or rural Kenya, the struggle for basic rights lacks immediacy. But sometimes we can entrap ourselves into becoming decent and humane people by advancing sound policies and laws. The road from unstable emotions to genuine entitlements—rights—is one we must travel if we are to transform humane values into meaningful and effective programs that will serve precisely those who need our empathy and solidarity most. In other words, we are not opposed to pity, but we’re anxious to press for policies that would protect vulnerable populations from structural vio-lence and advance the cause of social and economic rights.
Social and economic rights, which include the right to health care, have been termed the “neglected stepchildren” of the human rights movements and held up in opposition to the political and civil rights now embraced, at least on paper, by many of the world’s most powerful governments. So striking is this division within the rights movements that some have come to refer to social and economic rights as “the rights of the poor.” Certain African voices, at least, have argued that human rights language is not widely used on that continent because so little at-tention is paid, by the mainstream human rights organizations, to health care, clean water, primary education, and other basic entitlements. This means that little attention is paid to the voices of those who do not enjoy these rights.20 The language of political rights has become meaningless
19. See Rony Brauman, “L’Assistance Humanitaire Internationale,” in Dictionnaire de Philosophie Morale et Politique, ed. Monique Canto-Sperber (Paris: Presses Universitaires de France, 1996), pp. 96–101. Reflecting on his experience during the convoluted Cam-bodian refugee crisis of the late 1970s and early 1980s, Brauman notes that, for aid work-ers, “the choice was…not between a political position and a neutral position, but between two political positions: one active and the other by default” (Rony Brauman, “Refugee Camps, Population Transfers, and NGOs,” in Hard Choices: Moral Dilemmas in Humanitar-ian Intervention, ed. Jonathan Moore [Oxford: Rowman and Littlefield, 1998], pp. 177–94 at p. 181).
20. Chidi Anselm Odinkalu, in critiquing conventional human rights work in Africa, hazards a guess as to why so many human rights groups mirror the inequalities of our world: “Local human rights groups exist to please the international agencies that fund or support them. Local problems are only defined as potential pots of project cash, not as hu-man experiences to be resolved in just terms, thereby delegitimizing human rights language and robbing its ideas of popular appeal” (Chidi Anselm Odinkalu, “Why More Africans Don’t Use Human Rights Language,” Human Rights Dialogue: Human Rights for All? The Problem of the Human Rights Box 2 [2000]: 3–4, available at www.cceia.org/viewMedia.php/ prmTemplateID/8/prmID/602).
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to many people living in the worst imaginable poverty. Conversely, the language of economic rights is sometimes viewed as excessive, menacing, and irresponsible in the eyes of people living in the midst of plenty. This growing rift, I would argue, is the most pressing human rights problem of our times. As long as mainstream human rights organizations do not understand how poverty and inequality are also human rights viola-tions, rather than simply distracting background considerations, there is little hope of advancing the case for social and economic rights. Any doctor or public health specialist concerned with the health of the poor should agree, certainly. As long as certain fruits of modernity—in speak-ing of AIDS, certain diagnostic tests and medications—are considered commodities rather than rights, such sentiments as pity and compassion are not likely to be translated into meaningful changes for the millions who now need these resources to survive.
3. From Epidemics to Mass Killings: Arguing Genocide
Photographs, as we have seen, can provide a glimpse of the scandal of untreated disease and trigger the need to make sense of a problem such as AIDS in Africa; stories such as Joseph’s can “humanize” a colossal and impersonal catastrophe. But questions remain: when and where are such strategies effective? How does one measure efficacy?
Take the case of genocide, one of the defining human rights ques-tions of our times. The term is of recent provenance: it was coined by Raphael Lemkin in the mid-twentieth century to describe the policies of the Nazis. Although a fairly precise definition was proposed originally for the term, it is not often invoked. The feeling, among many, is that we know genocide when we see it. But do we?
Visuals have always been an important part of the evidence ad-vanced in arguing genocide. Again, we are leery of misusing images, because, as Sontag warns, “As one can become habituated to horror in real life, one can become habituated to the horror of certain im-ages.” 21 But we shouldn’t have to apologize for reporting what is really occurring. On February 23, 2005, Nicholas Kristof published an article about “The Secret Genocide Archive” in the New York Times, noting that “[p]hotos don’t normally appear with columns in this newspaper.” Kristof continues:
But it’s time for all of us to look squarely at the victims of our indif-ference. These are just four photos in a secret archive of thousands of
21. Sontag, Regarding the Pain of Others, p. 82.
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photos and reports that document the genocide underway in Darfur. The materials were gathered by African Union monitors, who are just about the only people able to travel widely in that part of Sudan.
…I’m sorry for inflicting these horrific photos on you. But the real obscenity isn’t in printing pictures of dead babies—it’s in our passivity, which allows these people to be slaughtered.
During past genocides against Armenians, Jews and Cambodi-ans, it was possible to claim that we didn’t fully know what was going on. This time, President Bush, Congress and the European Parlia-ment have already declared genocide to be underway. And we have the photos. This time we have no excuse.22
In his column, as in my telling of Joseph’s story and its echoes in Kenya, Kristof credits photographs with extraordinary evidentiary power— power that was not to be found, it would seem, in the equally graphic and far more detailed verbal testimony from Sudan in heavy circula-tion for more than a year. The power of the photograph, in his view, brings something new, something inarguable, to the equation. And yet, as Sontag has noted, photographs have long been used in this manner: “For a long time some people believed that if the horror could be made vivid enough, most people would finally take in the outrageousness, the insanity of war.” 23 Earlier she asks:
Who are the “we” at whom such shock-pictures are aimed? That “we” would include not just the sympathizers of a smallish nation or a stateless people fighting for its life, but—a far larger constitu-ency—those only nominally concerned about some nasty war taking place in another country. The photographs are a means of making “real” (or “more real”) matters that the privileged and the merely safe might prefer to ignore.24
Even during the course of the earlier genocides mentioned in Kristof’s piece, photographs of the slaughter existed; though widely circulated, they failed to stop the violence from continuing. There are omissions in Kristof’s inventory of recent genocides. One that didn’t make his list, at least not in the column cited, occurred in Rwanda, where I have
22. Nicholas Kristof, “The Secret Genocide Archive,” New York Times, February 23, 2005, p. A19. See also the continuation of these thoughts in his lucid essay “All Ears for Tom Cruise, All Eyes on Brad Pitt,” New York Times, July 26, 2005, p. A19.
23. Sontag, Regarding the Pain of Others, p. 14. 24. Ibid., p. 7.
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the great privilege of working as a physician. During the 1994 Rwan-dan genocide, some 800,000 people, perhaps more, were killed in 100 days. Survivors continue to grapple with the legacy of the killing, and not the least of their problems is how to discuss or represent what hap-pened during that year. For a long time, it was true that most people not from that region were simply unaware of the magnitude of the killing. A movie about the Rwandan genocide, which dramatizes the struggle of one middle-class Rwandan hôtelier at a time when close to a mil-lion died, is far more likely to result in widespread awareness of events already well chronicled and well photographed in scores of books. But such movies are not always honest about the history of such conflicts or why they happen. Do they, too, contribute to the belief that such trag-edies are inevitable “in the benighted or backward—that is, poor—parts of the world”? Do images and films and personal narratives erase the political economy of suffering in Rwanda and Haiti and elsewhere? The film industry does not have much of a taste for exposing the inner work-ings of structural violence.
What is most often left out of the story? An honest and unromantic look at that genocide would be one that focused on the region’s his-tory and its relation to the rest of the world. This is what Sontag means when she asks us to reflect “on how our privileges are located on the same map as their suffering.” Although much is made about the primi-tive agricultural implements used to do the killing, tiny Rwanda was in 1993 the continent’s third largest arms importer, behind Egypt and apartheid South Africa: some of the killing was in fact executed with modern weapons acquired from arms dealers operating out of Europe and elsewhere far from central Africa. And every honest exploration of the Rwandan genocide shows the key roles played by the government of France, which abetted the killers, and of the United Nations and the United States, which did little to stop them.25 A geographically broad web of violence linked events in Rwanda, and later Zaïre, with the com-plicity, rather than the detachment, of the industrial powers and of that mysterious entity, “the international community.”
The roots of what was termed, somewhat misleadingly, “ethnic frat-ricide” reach deep into the bloody soil of the colonial era, during which first German and then Belgian authorities laid down in great anthropo-metric detail the real and imagined differences between the Hutu and
25. Martin Meredith, The Fate of Africa: From the Hopes of Freedom to the Heart of De-spair—A History of 50 Years of Independence (New York: Public Affairs, 2005). See especially the damning assessment of France’s policies during the Rwandan genocide.
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Tutsi “races”—in quotation marks because the term is technically incor-rect and historically tendentious. Although these social distinctions are real and long predate European penetration of central Africa, colonial regimes ascribed to the region’s inhabitants immutable physical and social characteristics, buttressing and hardening hierarchies of human worth that had been less rigid in centuries prior to European contact.26 Layered upon this political and ideological foundation for inequality was the more recent field of growing social scarcity that served as an incubator for a bitter struggle for power—a slow-motion social catastro-phe that incited little interest among the powerful international actors who might have acted to avert what came to constitute the world’s larg-est mass killing in the latter half of the twentieth century.
Certain international actors, however, were far from passive bystand-ers. After the Rwandan military officer Juvénal Habyarimana seized power from fellow-Hutu Grégoire Kayibanda in 1973, the new dictator promised to ease growing tensions between the “Hutu Power Move-ment,” with which he and his predecessor were associated, and the Tutsi minority once favored by the Belgian colonial administration. Instead, the Habyarimana government was “relentless in the task of discrimina-tion [against] and scapegoating” of Tutsis,27 all the while siphoning off vast sums of government funds and foreign aid on the side. This did not deter those sending aid to an increasingly génocidaire government.
Reminded by Sontag of our obligation to locate our privilege on the same map as the suffering of our contemporaries, consider Franco-Rwandan relations. Journalist Philip Gourevitch underlines the close ties between the governments of Habyarimana and François Mitter-rand, ties that strengthened the Hutu-dominated military considerably. These ties were not focused exclusively on economic or development assistance:
A military agreement signed in 1975 between France and Rwanda ex-pressly forbade the involvement of French troops in Rwandan com-bat, combat training, or police operations. But President Mitterrand
26. To name but a few of the many books treating this subject, please see Philip Goure-vitch, We Wish to Inform You That Tomorrow We Will Be Killed with Our Families (New York: Farrar, Straus and Giroux, 1998); Gérard Prunier, The Rwanda Crisis: History of a Genocide (New York: Columbia University Press, 1995); René Lemarchand, “The Rwanda Genocide,” in Century of Genocides: Eyewitness Accounts and Critical Views, ed. S. Totten, W. S. Par-sons, and I. W. Charny (New York: Garland, 1997), pp. 408–32; and Mahmood Mamdani,
When Victims Become Killers: Colonialism, Nativism, and the Genocide in Rwanda (Princeton: Princeton University Press, 2001).
27. Fergal Keane, Season of Blood: A Rwandan Journey (New York: Penguin Books, 1997), p. 21.
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liked Habyarimana, and Mitterrand’s son Jean-Christophe, an arms dealer and sometime commissar of African affairs in the French Foreign Ministry, liked him too. (As military expenditures drained Rwanda’s treasury and the war dragged on, an illegal drug trade developed in Rwanda; army officers set up marijuana plantations, and Jean-Christophe Mitterrand is widely rumored to have profited from the traffic.) France funneled huge shipments of armaments to Rwanda—right through the killings in 1994—and throughout the early 1990s, French officers and troops served as Rwandan auxiliaries, directing everything from air traffic control and the interrogation of RPF [Rwandese Patriotic Front] prisoners to frontline combat.28
The role played by France was beyond the pale; the roles played by other powers were hardly glorious; United Nations efforts were, at best, wholly ineffectual. Others attempting to salve the suffering, including those working in nongovernmental organizations and human rights groups, were overwhelmed. In some instances, these organizations made things worse. It has been claimed that humanitarian aid to refugees of the Rwandan genocide served to prolong the conflict; some veteran hu-manitarian groups eventually conceded that they were doing more harm than good working in Rwandan refugee camps in Zaïre.29
As post-genocide Rwandans struggle to confront a burgeoning AIDS epidemic, itself accelerated by violence and poverty, the bloody residue of 1994 proves difficult to wipe away.30 It even clings to health
28. Gourevitch, We Wish To Inform You That Tomorrow We Will Be Killed with Our Families, p. 89.
29. Fiona Terry, then working with Médecins Sans Frontières in the Goma camp, writes searingly about mistakes made in allowing humanitarian aid to be diverted to the regrouped génocidaires and the former Rwandan military:
The history of the Rwandan refugee camps graphically illustrates the paradox of hu-manitarian action: it can contradict its fundamental purpose by prolonging the suffer-ing it intends to alleviate. Relief agencies rushed to avert immediate disaster among the refugees pouring into Tanzania and Zaïre, but inadvertently set the scene for the eventual disaster…. Former leaders manipulated the aid system to entrench their control over the refugees and diverted resources to finance their own activities. In short, humanitarian aid, intended for the victims, strengthened the power of the very people who had caused the tragedy. The consequences were devastating. (Fiona Terry, Condemned to Repeat: The Paradox of Humanitarian Action [Ithaca: Cornell University Press, 2002], pp. 1–2)
30. Even now, as I edit these proofs in rural Rwanda, I read or hear about the ongoing struggle for meaning, for a dominant narrative, that might “explain” what happened in 1994. Rwanda today is a safe and lawful nation, at least compared to the other countries in which I work and most of the countries that surround it. But the tensions persist. I sense them in the prisons, which are filled with génocidaires; in the sometimes uneasy relations between patients and doctors; in the impoverished villages we serve; and in the wild rumors and pre-dictions one hears in working in this traumatized nation. I read it in the news.
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Figure 3. Photograph taken within the chapel of Ntarama, March 2005, nearly eleven years after the Rwandan genocide claimed 800,000 lives (photo by Paul Farmer).
care providers concerned only to serve the sickest, regardless of their social or ethnic identities.
Some in Rwanda believe it is unwise to try and wipe away the residue of genocide. Better to display it. There are many genocide memorials in Rwanda; survivors have their reasons for leaving the evidence intact. I took this photograph (figure 3) inside a church in the village of Nta-rama, about an hour from the capital city of Kigali. Not far from the church, a banner promising “Never again” was draped over more bags
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Figure 4. “Never again” banner, Ntarama, Rwanda (photo by Paul Farmer).
of bones (figure 4). Since I do not work in that village, I am relying on others brave enough to tell their stories and on those who translated them from Kinyarwanda into English. Dancilla was born and raised in Ntarama; she lives there still and helps to tend the church, which is now a genocide memorial. Here is her story:
When the militia came in April 1994, I hid in the little church at Ntarama with my children. There were several thousand people crammed into the building—people who could not run into the hills. Our men had left us there as they thought we would be safe. In previous years when the government came to kill, they usually killed the men and left the women and children alone. We were very fright-ened but could not imagine what was going to happen.
The gendarmes arrived and broke some holes in the wall of the church—which you can still see today. They threw grenades into the crowds of people, then fired shots into the congregation. The noise of screaming and the mess was awful.
There were parts of bodies everywhere. I was covered by dying
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people, blood and filth. Some were still moving slowly, but most were dead. Then the doors were broken down so that the militia could come in and find anyone still alive—then they finished them off with machetes. I could hear the militia going about their “work” while my friends and neighbors groaned and breathed their last. I dared not move and thought I would suffocate under the bodies while I waited my turn to be butchered. There were so many people in there that they did not find me buried under the bodies.
After the militia left and everything was silent and dark, I crawled out from under the corpses. I learned later that my husband had been killed not far away from the church. My two children had been killed in the church also.
We survivors of Ntarama decided not to bury our loved ones. Why do we leave the bones of our families lying on the floor of the church? It would be easier and better for us to bury our loved ones and give them dignity. But that would also make it easy for everyone to forget. We do not want people to forget. Everyone must know what happened because of the extremists and because of the hatred. If people forget what happened when the UN left us, they will not learn. It might then happen again—maybe to somebody else. We owe it to our families to make the world remember. That is why we wait here like this. It makes me happy that people can come here and learn what happened, or that people far away can know about this place. For the sake of the future we must keep this memory alive.31
31. Dancilla’s story is told on the website of the Rwanda Fund (www.rwandafund.org/ sections/survivors/dancill.htm), an organization dedicated to preserving the memory of the genocide and promoting educational and economic opportunities for Rwandan children. I thank Beth Collins for taking me to Ntarama and for finding Dancilla’s testimony. I am of course deeply grateful to Dancilla for leading us through the memorial.
Jean Hatzfeld has made a valuable contribution by interviewing, in prison, about a dozen low-level génocidaires and a couple of more notorious criminals, all of them Hutu. The entire book (and his previous one, which focuses on genocide survivors) merits careful reading, but here I’d just like to translate the comments of one of the killers who participated in the massacre in Ntarama. What were the killers thinking when they violated the church in order to kill everyone inside?
Thursday, when we entered the church in Ntarama, the people were lying quietly in the shadows. The wounded were visible between the pews; the still unwounded scattered under the pews; the dead in the aisles at the foot of the altar.
We were the ones making all the noise. They awaited death quietly in the church’s tran-quillity. For us, it was no longer important that we were in the house of God. We yelled, we joked, we gave orders, we insulted. We went person to person, checking everyone’s face, to finish them off carefully. If we had any doubt regarding whether or not someone was dead or dying, we dragged the body outside to inspect it in the light of day.
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