for her to “die with dignity” than to be taken to the nearest hospital because they viewed the public health facilities as an arm of the government counterinsurgency.3
I was immediately gripped by the sense of, “there but for the grace of God go I.” After all, I could easily have been in the same situation. I dropped the neutral human rights investigator role and the delegation arranged for this woman to be accompanied to the hospital in San Cristóbal de las Casas by a representative of a local nongovernmental organization (NGO) who the community elders accepted. The NGO representative made sure that the woman would not have to answer any political questions—which was a common tactic that government facilities at the time were using to intimidate Zapatista sympathizers—and that she was treated appropriately by the health providers. Afterward, the woman—alive and healing—was transported back to her community by the same NGO representative.
In retrospect, however, it was not “but for the grace of God” that she was in a life-or-death situation—and that I, the previous week, was not. It was because of very human choices about laws and policies about women’s education and the use of health facilities; it was because I was a white, middle-class woman with good health insurance living in a city with excellent health care; and it was because I was able to make decisions about my own body, and my own life—whereas she was not.
I cannot count how many times during the years I have been engaged in this work that I have heard that the “will of God” led to the death or suffering of a woman, a child, or a family. And often “God’s will” has seemed to be tinged with a good dose of misogyny. I remember Lidia, for example, who had a protracted labor and was unable to stop her own body from crushing the skull of her unborn child and then she expired herself, because allegedly she would not confess to an adulterous act. And there was Carolina, married to a loutish drunk, who even as she exsanguinated from an overdose of misoprostol, spent her final hours soaking her own blood up in rags, in a desperate attempt to prevent her children from finding her in a pool of blood upon returning home from school. Her suffering was apparently “deserved” because she had tried to have an abortion, fearing the prospect of having to support another child with her abusive, alcoholic husband.
Men are not always part of the problem, of course. In Ethiopia, I met Mahmoud, whose wife had died a few years before we spoke. He told me how he continued to dream of her every night and when he awoke, gripped by the reality that he was alive and she was not, he would feel deeply depressed, wishing for his children’s sake that he had died instead. Indeed, I could see that the children were not doing well, and one of them had been recently hospitalized for kwashiorkor, a condition of acute malnutrition. Mahmoud told me that he knew that there must have been something he had done to make his wife die and for him and his family to suffer so awfully, but he could not tell what. And he went on to say through tears—very unusual for a man from Ethiopia to share in front of a foreign woman—that he believed that part of his transgression was precisely not knowing what deep wrong he had committed. Mahmoud was consigned to his own private Hell for eternity, wondering what he had done to bring the wrath of an unforgiving God on his family. It was unthinkable for him to believe that indeed he had committed no great sin and that in fact his wife had died because of a profound injustice—an injustice for which humans, and not God, were responsible.
Health and Suffering as Reflections of Social (In)justice
It is impossible to do health and human rights work for very long and still cling to the notion that our own sadness, our own pain, is somehow special. The late Nigerian author Chinua Achebe captured this in Things Fall Apart: “You think you are the greatest sufferer in the world? … Do you know that men sometimes lose all their yams and even their children? … Do you know how many children I have buried …?… If you think you are the greatest sufferer in the world ask my daughter … how many twins she has thrown away.”4 The truth is that all of us eventually live broken lives. The question is how we make sense of the fragments.
I argue in this book that applying a human rights framework to health forces us to think about how we understand our own suffering and that of others, and the fundamental causes of that suffering. What is our agency—our power to act—as human subjects? What is the agency of other humans in decisions that affect our health, and how is the line drawn between what are mutable human policies and decisions and what we may see as “natural”? Richard Horton, editor of the Lancet, has argued, human rights are important in relation to health “because they bring a moral dimension to our discussions about the suffering of others and because of the duties they impose on each of us.”5
In this book, I seek to contribute to an understanding of how we construct narratives about suffering, in moral but also in legal terms, and of the connection between conceptions of power relations and state responsibility that those narratives entail. I argue that, ultimately, applying a human rights framework to health should also cause us to act differently because treating with indifference the too-often unjust suffering of others, whether on our street or across the globe, denies the importance of the lives of others and, in turn, undermines all human dignity in this increasingly interconnected world.
Of course, not all suffering and ill-health are a matter of human rights violations. Plenty of suffering and illness in this world can be blamed on the genetic lottery, poor choices that lead us to wreck our own lives and those of the people we say we care about, bad luck, and our human penchant for selfish and brutish behavior. And pain and suffering are part of the essential fragility of our existence, part of the texture of our lives. But there is also injustice, which stems from arbitrariness—the arbitrariness of the color of our skin, the genitalia attached to our bodies, and the place in the world in which we were born, for example. There is the injustice of miasmas of corruption and massive indifference to the misery of fellow human beings and of laws and policies and practices that embed ideological, religious, and cultural prejudices in our daily lives and rob certain people of the ability to live with dignity and well-being. That is the suffering I am concerned with in this book.
In 1948, the United Nations General Assembly adopted the Universal Declaration of Human Rights (UDHR), with no dissenting votes. Article 28 of the Universal Declaration calls for “a social and international order in which the rights and freedoms” in the UDHR can be fully realized.6 I believe that if we took that call seriously, the landscape of global health and justice would be dramatically different. For example, we could no longer tolerate the fact that in some countries a girl has a greater chance of dying in childbirth than graduating from primary school. Nor would we be able to simply lament that nearly seven million children under the age of five die every year from preventable diseases of poverty while in the United States and elsewhere, middle- and upper-class children and their parents find distraction in incessant materialistic accumulation.7 Rather, something about this egregious imbalance, and the fact that so many of us can live our lives of privilege with such long shadows of suffering emanating from them, would strike us as fundamentally wrong—as a “manifest injustice” in Amartya Sen’s words, which demands not just charity but breaking out of our passivity to create fundamental change.8
In the last twenty years, so-called human rights–based approaches (HRBAs) to health and development have proliferated among NGOs as well as international agencies.9 In 2003, the United Nations issued a “Common Understanding” of what an HRBA requires in development programs.10 Moreover, human rights advocacy organizations, courts, and quasi-judicial international bodies, among others, have increasingly been engaged in interpreting and applying human rights norms in health contexts, from HIV/AIDS to maternal health, and there has been tremendous clarification of norms relating to the right to health itself. As the UN “Common Understanding” on HRBAs states, common themes can be identified across these efforts, including emphasis on nondiscrimination and equality, participation, accountability, and the rule of law.11 What it means to apply these HRBAs in theory and practice, and to elements of human rights frameworks more broadly, and how applying these HRBAs challenges conventional public health
