If we fail to act

Author: Paul Farmer, M.D.

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As a physician who has battled infectious diseases in Haiti, Rwanda and elsewhere, I know we are in the midst of a staggering wave of killing, one that brings to question all notions of moral values. The numbers alone 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. 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 deaths over the next few decades.

Have these numbers 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? Where, amid all these numbers, is the human face of suffering? What values might guide our response to such suffering?

These are rhetorical questions, but not ones without answers. Much can be done to avert these deaths. Allow me to offer the example of Joseph, a patient of mine. On the afternoon of March 17, 2003, four men appeared at the public clinic in Lascahobas, a town in central Haiti, bearing a makeshift stretcher. On the stretcher lay a young man, eyes closed and seemingly unaware of the five-mile journey he had just taken. After the four-hour trip, the men placed their neighbor on an examination table. The physician tried to interview him, but Joseph was stuporous, so his brother recounted the dying man’s story.

joseph1.jpgJoseph, 26 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 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. 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 employed by Partners In Health, a charity I helped to found, visited their hut. The health worker recognized the signs of tuberculosis and HIV and suspected 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.

Joseph was indeed diagnosed with advanced AIDS and disseminated tuberculosis. He was hospitalized and treated with both antiretrovirals and antituberculous medications. Joseph told his physicians, “I’m dead already, and these medications can’t save me.”

Despite his doubts, Joseph dutifully took the drugs. 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, and was visited each day by a neighbor.


Joseph now speaks in front of large audiences 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 immediately to mind. Thinking about Joseph’s experience, and so many others, leads me to reflect on injunctions, first heard as a child instructed to read the Gospel according to Matthew, about “the corporal works of mercy.” I’m sure I didn’t pay much attention then. But three decades later, these injunctions—feed the hungry; give drink to the thirsty; clothe the naked; shelter the homeless; visit the sick; visit the prisoners; bury the dead—strike me as worthy goals for those seeking guidance in diminishing suffering, whether due to disease or to violence. As important for a doctor concerned about the right to health care, the corporal works of mercy are a reminder of the radical nature of the values necessary to promote basic human rights. We need the tools of our trade—in this case, laboratory tests, medicines, health care workers—to save lives. But we also must have hope and imagination to make sure proper medical care, a corporal work, reaches the destitute sick.

Human rights and human values

But are the human values of compassion, pity, solidarity and empathy all there is to it? Are the corporal works of mercy likely to become policy goals in precisely those settings in which they’re needed most? How might the notion of rights reframe a question often put as a matter of charity, mercy or compassion? Conversely, what happens when other human values come to play in settings of epidemic disease? What happens when the values in question are selfishness, greed, callousness, resignation or just plain lack of imagination?

We know at least one answer to these questions. In 2004, I visited a number of Kenyan communities seemingly bereft of young adults. This area along the shores of Lake Victoria is one of the epicenters of the AIDS pandemic, and surveys of young adults over the past two decades indicate rates of infection ranging upward of 30 percent. And yet I met not a single poor Kenyan receiving antiretroviral therapy—first introduced more than a decade ago and still the only effective means of treating AIDS.

The medications that saved Joseph’s life are available throughout the world to those who can pay for them. This is no less true in Kenya. 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. To make sure that poor people suffering from AIDS stop dying, it will be necessary to move beyond compassion or pity to stable arrangements for all those afflicted with this and other treatable diseases. Translating compassion, pity, solidarity or empathy into policy—mandating the corporal works of mercy—is a difficult task. But it is not impossible, which was the message I sought to share with those working in the region, including friends working with a large Catholic charity long active in Africa.

On a subsequent visit to Kenya, an aid-worker friend and I traveled with a representative of that charity; it had recently received a significant amount of funding for AIDS relief. My friend and others had done much, in the year since I’d first visited, to extend the fruits of modern science, including antiretroviral therapy, to the region’s poor. “Treatment is important,” my friend remarked after an uplifting day of home visits, adding that he’d recently seen a before-and-after-treatment photograph of a man who he assumed was Kenyan. “The difference between the two photographs was extraordinary,” he added. My friend, who had dedicated his career to good works, clearly had been moved by these photographs. And he was in a position to translate his reaction into interventions designed to save the lives of those already sick. The photographs, it turned out, were of Joseph from Haiti, whose images had made it to a Kenyan newspaper. Africa is full of the “before” photos, but there are, alas, far too few “after” photos.

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 that underpin notions of human rights is a long leap. To move from sentiments to the corporal works of mercy, and to rights, is a longer leap still. For many, especially those far removed from conditions such as those faced in rural Haiti or rural Kenya, the struggle for basic rights is vague and abstract. But the road from 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. Compassion is a virtue, but we must press for choices that will protect vulnerable populations from structural violence 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. They are 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 attention is paid by mainstream human-rights organizations to health care, clean water, primary education and other basic entitlements. This means little attention is paid to the voices of those who suffer neglect or outright abuse in terms of these needs.

Conversely, people living in the midst of plenty often distrust the language of economic rights: they see the call to provide for such needs as excessive, menacing and irresponsible. The growing rift between legalistic and substantive understandings of “rights” is, I would argue, 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 violations, rather than simply distracting background considerations, there is little hope of advancing the case for social and economic rights. As long as such fruits of modernity as up-to-date HIV and TB treatments are considered commodities rather than rights, such sentiments as pity and compassion are not likely to be translated into meaningful change for the millions who need those resources to survive. The corporal works of mercy once touted as central to Catholic social teaching become arcane theological references rather than a plan for action.

From epidemics to mass killings

It’s one thing for a doctor to argue that social and economic rights are necessary if we are ever to care for the destitute sick. But might this agenda be available as we contemplate preventing extreme violence? And what do we need to know about history if we are to take noble ideals—the corporal works of mercy or the promotion of social and economic rights—and make them real?

Take the case of genocide, one of the defining human-rights questions of our times. The term was coined by Raphael Lemkin in the mid-20th century to describe the policies of the Nazis. Although a fairly precise definition was proposed originally for the term, the criteria are not often explicitly named. The feeling is that we know genocide when we see it. But do we?

In March 2005 I took a photograph inside a Catholic church in the Rwandan village of Ntarama, about an hour from the capital city of Kigali. The photo was of human skulls, deposited there after the 1994 genocide that had killed 800,000 people in 100 days. These were the remains of men, women and children killed inside the church, where they had sought refuge. Not far from the church, a banner promising “Never again” was draped over bags of bones.

“Never again”: We have heard this before—after the Holocaust and Cambodia and Bosnia. And then Rwanda. And now the Sudan.

Visuals have always been an important part of the evidence advanced in arguing that genocide has occurred or is in progress. On February 23, 2005, Nicholas Kristof published an article entitled “The Secret Genocide Archive” in The New York Times. He explained: “It’s time for all of us to look squarely at the victims of our indifference. These are just four photos in a secret archive of thousands of photos and reports that document the genocide underway in Darfur. . . . 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 Cambodians, it was possible to claim that we didn’t fully know what was going on. This time, President Bush, Congress and the European Parliament have already declared genocide to be underway. And we have the photos. This time we have no excuse.”

Kristof credited photographs with the power to “declare” the occurrence of a crime against humanity. He errs only in speaking of the evidence as something new. Even during the course of the earlier genocides he mentions, photographs of the slaughter were available but failed to halt the violence. And Kristof’s inventory of recent genocides omits Rwanda, where I have the great privilege of working as a physician. I know there is little reason to believe photographs might move those with power to avert genocide or that values alone—including those promoted within churches like that in Ntarama—can prevent death on a massive scale.

Survivors of the Rwandan genocide continue to grapple with the legacy of the killings, a wave of murders in which virtually the whole population of the country was implicated, whether as killers or as victims. For a long time, most people not from that region were simply unaware of the magnitude of the killing, despite the publication of newspaper reports and scores of carefully researched books. It took a movie, Hotel Rwanda, which dramatizes the struggle of one middle-class Rwandan hôtelier at a time when close to a million died, to create widespread awareness of these events.

Awareness is good. But the film industry lacks the desire and the skills needed for exposing the inner workings of structural violence. An honest and unromantic look at that genocide would focus on the region’s history and its relation to the rest of the world. It would show our collective implication in the horror.

Journalists and filmmakers who have tried to represent the 1994 genocide have made much of the machetes and other primitive agricultural implements used to do most of the killing. But tiny Rwanda was in 1993 one of the continent’s largest arms importers. Some of the killing was performed with modern weapons acquired from arms dealers operating out of Europe and elsewhere. An 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. It was not just a matter of peasants crazed with hatred hacking each other to pieces. An extensive web of violence ties events in Rwanda to the complicity, rather than the detachment, of the industrial powers and of that mysterious entity, “the international community.”

The roots of the genocide reach deep into the bloody soil of the colonial era, during which first German and then Belgian authorities built into policy the real and imagined differences between the Hutu and Tutsi “races”—in quotation marks because the term is technically incorrect and historically tendentious.

Layered upon this political and ideological foundation for inequality was the more recent fact of growing scarcity that fostered a bitter struggle for power—a slow-motion social catastrophe that incited little interest among the powerful international actors who might have helped avert the world’s largest mass killing in the latter half of the 20th century.

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. What are the human values that might have stopped or at least slowed these mass killings? Indignation is not enough, nor is the goodwill of people like you or me. Nor do “bearing witness” and documentation suffice; these were abundant. Even U.N. officials ostensibly in a position to do something to save lives in Rwanda found themselves hobbled by forces much larger than themselves.

Take the experience of General Roméo Dallaire, who led the U.N. peacekeeping force in Rwanda and survived the genocide, although some of his troops did not. The impotence of his office is evident in his memoir, Shake Hands with the Devil. Dallaire watched as Rwanda went up in flames and hundreds of thousands of people were murdered, but he couldn’t get the extra troops, matériel, armored vehicles or even water that he needed. The French government helped to arm and train the génocidaire government and stymied peacekeeping. The U.S. administration, still smarting from the killing of American soldiers in Somalia, pressed for a reduction in the size of the peacekeeping force in Rwanda. African lives, it seems, just weren’t worth the relatively trivial investment it would have taken to save them.

Dallaire has often said that what happened in Rwanda was made possible by the world’s racism. The indifference of the so-called “world government” to the fate of a large subset of humanity continues to haunt him. He wasn’t able to stop the genocide, but he wanted to make sure the lesson would not be forgotten. After being relieved of his duties in Rwanda, he testified at tribunals to judge the guilty. Soon General Dallaire’s superiors in the Canadian armed forces warned him to abandon the “Rwanda business” and stop faulting the international community for its inaction or to leave the military.

For Dallaire, only one answer was possible: “I was the force commander, and I would complete my duty, testifying and doing whatever it takes to bring these guys to justice.” In April 2000 Dallaire was forced out of the Canadian armed services and given a medical discharge. “My soul is in Rwanda,” he says. “It has never, ever come back, and I’m not sure it ever will.”

The corporal works of mercy, the same ones that might avert deaths from untreated infectious disease, would have been precisely the tonic necessary to ease suffering in Rwanda. But once again we must ask if mercy and other values alone can prevent death on a massive scale. It was in the end a Rwandan rebel force—a military action, performed by people wielding guns, not cameras or Bibles or microphones or notebooks, and without the support of the “international community"—that halted the killing. This unpleasant fact galls all those who hope knowledge and documentation will sway the powerful and alter the course of history.