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Introduction

How Do We Understand Suffering?

We humans can tolerate suffering: we cannot tolerate meaninglessness.

—Desmond Tutu, Believe: The Words and Inspiration of Desmond Tutu

Human rights are being violated on every continent…. Human suffering anywhere concerns men and women everywhere.

—Elie Wiesel, Nobel Peace Prize Acceptance Speech, December 10, 1986

Before I had my two children, I had a miscarriage. I was living in New York City at the time and medically it was not a major event. I required surgery, but I was admitted to the hospital very early in the morning and by that same evening I was released and at home. Of course, emotionally it was deeply, deeply painful. Earlier, I had been invited to go on a human rights fact-finding delegation to the state of Chiapas in southern Mexico that was scheduled for the week after my unexpected miscarriage. I had lived in Mexico for years and been to Chiapas many times before, and the political events that prompted the delegation felt very immediate to me. And, undoubtedly to escape the emotional pain I felt and to stop feeling sorry for myself, the very next week I did indeed go.

Chiapas is the state where the Zapatista Army of National Liberation (EZLN, according to its Spanish acronym) had launched its revolt on the day that the North American Free Trade Agreement (NAFTA) went into effect on January 1, 1994. The EZLN was protesting economic and political policies that left indigenous people systematically marginalized and impoverished. Its goals included achieving basic citizenship rights, indigenous control over resources (especially land), and demilitarization of indigenous areas.¹ In December 1997, when I was there on this occasion, paramilitary violence was at its height in Chiapas. The Mexican government was exploiting religious and political fault lines in these impoverished indigenous communities and arming paramilitary groups with Orwellian names, such as “Peace and Justice,” in order to terrorize potential Zapatista sympathizers. On December 22, 1997, thirty-six women and children were killed in Chenalhó, a community in los Altos, the “mountainous region,” of Chiapas.² In the weeks preceding the Acteal massacre, as it came to be called, an upswing in violence had already exacerbated the displacement of Zapatista-sympathizing communities.

It was in one of those communities of internally displaced persons that I encountered a woman who was hemorrhaging as a result of a miscarriage. She was just about at the same stage of pregnancy as I had been the week before. However, in her case the hemorrhage was a life-or-death situation. She was weak from the loss of blood and obviously terrified. Her husband and the elders in the community had decided that it would be better 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 and development approaches, are the subjects of much of the rest of this book.

I argue throughout this book that the core of applying a human rights framework to health involves understanding that patterns of health and suffering reflect power relations as much as they do biological or behavioral factors. If HRBAs, or human rights frameworks generally, are to be meaningful to the people on whose behalf we purport to work, they must strive not just to analyze but to remedy what Paul Farmer calls the “pathologies of power” that produce gross inequities within and between our societies.¹² When we begin to rethink power relations and to question the root causes for our own and others’ suffering, it “de-naturalizes” both the biological individualism of the medical and health fields and many of the societal arrangements that perpetuate poverty, inequality, and violations of human rights; we see that these forces do not “just happen”; that they are neither “natural” nor inevitable acts of God. Thus we can begin to reexamine what it means to say that something causes someone’s illness or condition, and also look at what produces certain distributions of power and privilege in society. We can begin to question prevalent narratives for thinking about poverty, inequality, human rights, and health that we often take for granted.

Many of these questions have no easy answers. No area of human rights more acutely poses queries about what is required of society for individuals to live lives of dignity than health. Think, for example, of the baby born very prematurely, who is kept “alive”—in some very limited meaning of that word—in a hospital in the economic North at inordinate expense to the public’s coffers, or of the person with terminal cancer in a middle-income country whose “few more months” may cost more than what it would to immunize the majority of children in a rural community. Where do the boundaries of social and state responsibility lie? These are some of the questions of life and death with which we need to wrestle honestly and sincerely, and without empty sloganeering, if we care about applying human rights frameworks to health.

Further, we need to be willing to follow the implications of the conclusions about what justice in health would require, which I argue often demands that we rethink our approaches to both global health and human rights. For example, I believe we should all feel outrage at how arbitrary it is that the woman in Chiapas could have easily died (and all too many women do) while my own miscarriage meant simply a minor medical procedure. If we share that visceral indignation, even when the suffering is across borders— “out there”—we first need to understand what factors underlie that arbitrary difference in life chances; what makes it injustice rather than tragedy; and what opportunity structures exist, for different actors, to change those circumstances. And then, we need to act. This book is a call to begin to remake our institutions, and social and legal arrangements, at national and global levels, as a matter of what we owe to one another as full human beings with equal dignity.

Much of this book discusses women’s and children’s health, both because they have been the focus of my own work and because they are particularly sensitive reflections of patterns of justice and injustice. Poverty and inequality are inscribed in the malnourished, and too often stunted, bodies of children. Show me a profoundly malnourished child and I will show you factors of social and gender injustice within the family; in the community; in access to information, health care, and education; and in the food-security policies, budgeting priorities, and legal and policy frameworks of the country.

Or take maternal mortality. As I have often emphasized, maternal mortality is not principally a medical problem; it is primarily a social problem and a problem of political will at both the national and international levels. Hundreds of thousands of women and girls are still dying every year in the global South not because we do not know how to save them—we do, and we have for well over half a century—but because their lives are not valued, because their voices are not listened to, and because they are discriminated against and excluded in their homes and communities and by health-care systems that do not prioritize their needs.¹³ Those are issues of fundamental human rights and social justice, and rights therefore need to be at the center of responses.

Amazing advances have been made not only in the conceptual clarification of HRBAs to health and development in recent years but also in the evolution of the right to health itself. A flurry of recent books on the right to health in international law and in regional perspective attests to the intensity of activity, as well as to scholarly attention.¹⁴ Yet an enormous gap exists between theoretical discourses and practice. Human rights frameworks and HRBAs remain marginal in mainstream development as well as in health policy and programming across much of the world. Not only is the enjoyment of the right to health a very distant dream for most of the world’s inhabitants, but even the idea of an enforceable entitlement relating to health care and public health protections seems disturbingly irrelevant to most discussions about health and development that take place at national and global levels.

Now that we have a clearer idea of the concepts and principles that characterize an HRBA to health, I believe that we need to translate that knowledge for development economists and governmental policy makers, for health practitioners, and most of all for the people whose lives and well-being are affected. We need to make human rights frameworks relevant for them by making explicit assumptions regarding how social change happens and how applying a human rights framework to health would make a difference in practice.

Human rights are all too often thought about by health professionals and the public as abstract principles or as relating only to laws and policies. On the contrary, as I make explicit throughout this book, applying HRBAs should change decision making, and in turn opportunity structures, in specific ways at multiple levels of government and throughout the stages of the policy cycle. One aim of this book is to illustrate how human rights frameworks are relevant to the decisions that policy makers, providers, programmers, activists, and judges face in their daily work and in turn how human rights strategies can be deployed to produce changes in normative recognition, policy processes, and social mobilization, which ultimately have the potential to create social transformation.

Addressing the “So What” Questions

In addition to showing how human rights frameworks can be operationalized in practice, we also need to address the “so what” questions in a broader sense—Why should people care about applying human rights to health? Why do these frameworks matter? I believe that to answer these questions adequately requires the development of an empirical evidence base with respect to their impacts. Human rights frameworks and HRBAs are still reasonably new, but now that we have a better sense of common elements of what they include, we need to move beyond hortatory invocations of their importance to establishing what difference they can make in diverse people’s lives. I argue throughout this book that establishing and measuring impact must go far beyond merely pasting some indicators that might be easy to grasp—such as “respectful care”—onto traditional public health programs. Developing such an evidence base also requires new methodologies to capture the full impacts and, more broadly, lessons of applying human rights frameworks, which go beyond standard public health outcome and process measures.¹⁵

Trying to point to value added of human rights in conventional health programs is enticing, as we want national governments to adopt HRBAs; yet I fear it will ultimately be self-defeating because applying human rights principles will not necessarily accelerate progress in conventional measures. In addition, doing so reduces human rights to a purely instrumental value. Throughout these pages, I argue that a meaningful HRBA cannot merely repackage a conventional public health program. On the contrary, applying an empowering human rights framework to health transforms the evaluative space—the outcomes of interest as well as the process. For example, as discussed in later chapters, if we take seriously that human rights require shifting power dynamics, as I suggest, then we need metrics to assess political and institutional changes, shifts in public perceptions, and changes in outcomes.

What we measure reflects what we care about. Therefore, answering the “so what” question also necessarily calls for engaging in a dialogue with people outside the human rights field about normative questions—about how things should be, about what we should care about. The “so what” question inevitably leads to discussions about the purpose of health policies and programming in particular and of social and economic development more generally—and even about the nature of power and justice. In applying a human rights framework to health, in the context of maternal health, for example, we do not care simply about averting deaths. Rather, from a human rights perspective, women and girls have the right to live lives of dignity, which includes enjoyment of their sexual and reproductive health and rights (SRHR) as well as other human rights. As part of enabling them to do so, we should ensure that they have the conditions to go through pregnancy and childbirth safely. But applying a human rights framework also requires giving them meaningful choices throughout their lives, which go far beyond the health sector.

The great majority of women who die from pregnancy-related complications have lived lives marked by poverty, deprivation, and discrimination. From the moment of their births, these girls and women often face a funnel of narrowing choices whereby they are unable to exercise meaningful agency with respect to what they will do with their lives, how they will express their sexuality, how much they will be educated, with whom they will partner, when they will have sex, whether they will use contraception, and finally—as in the case of the woman in Chiapas who was suffering a miscarriage—what care they will get when they are pregnant or delivering, even when their lives hang in the balance. Applying a human rights framework to health in the context of maternal health, demands opening spaces, by shifting the opportunity structures—the resources and barriers—different actors face—to enable these women to live with dignity.¹⁶ Answering the “so what” question requires fundamentally rethinking the nature of the problem, as well as the solution.

I also argue throughout this book that to effect transformative social change we need to shift thinking not merely in relation to health, as large a challenge as that is, but in relation to the demands of human rights. Part of the distressing disconnect between the normative development of human rights law relating to health and what public opinion and public policy in many countries reflect, relates to narrow conceptions of human rights—as civil and political rights only—and the consequent limited demands of social justice. Much of this book, therefore, explores the implications not just of different paradigms of health but also of conceptions of state responsibility and the ways in which we understand how power is exercised to limit people’s abilities to enjoy their health rights and live lives of dignity. This book does not seek to proselytize for human rights or HRBAs; applying human rights frameworks to health is only meaningful insofar, and if and when, it leads to greater social justice.

This book is not directed especially at international human rights scholars, although I do include some discussion of evolving norms of international law and the need for further evolution. I believe that if we want to transform the world we cannot continue to talk among the converted; we need to reach people in other disciplines who come from different perspectives. We also need to reach the future leaders in law, development, and public health. This book is therefore an attempt to contribute to widening the circle and showing students, as well as practitioners from other fields who might not be immersed in human rights, why applying a human rights framework to health can matter.

Personal Stories: A Personal Voice

I am convinced that the reasons that human rights matter are often best understood within the context of individuals’ lives. Statistics are, of course, necessary to illustrate trends and probabilities, and to place individual stories in context. However, by sharing stories of real people (whose names have been changed to preserve their privacy unless their names are within the public domain) and places throughout this book, I hope that the dilemmas and issues faced in the field will feel more immediate for many readers. Humans are, as Jonathan Gottschall argues, naturally storytelling animals; we make sense of our lives through narratives, narratives derived from religion, from national founding myths, and from family lore passed on from generation to generation, among other things.¹⁷ And because we understand our own lives in the form of narratives that we live out, the form of narrative can also help us understand the lives of others.¹⁸

As emphasized in many anthropological studies, rights exist as lived experiences, not as abstract concepts in international instruments, and the ways in which rights are made meaningful are often through social relations and interactions.¹⁹ I hope, therefore, that by capturing some elements of the particularistic through personal narratives, I will also be able to convey the universal commonality of humanness, as well as of human rights.

In addition, much of this book deals with the inexorably normative world we live in; throughout, I emphasize that the law and narrative are inseparable. The legal opinions discussed and the interpretations of human rights law are located in specific narratives about power, individuals, and the state, which in turn have an enormous impact on the social meaning of rights, as well as on our personal subjectivities.

As the stories collected here trace the work I have done in my professional life, they are in a sense my story as well. My mother’s family is from Argentina and I grew up bicultural and bilingual. I originally became a human rights lawyer largely because the horrors of the Dirty War in that country loomed large in my childhood consciousness, as did later my outrage at the role of the U.S. government in many of the dictatorships and dirty wars across Latin America.²⁰

I have had the privilege of living half of my adult life outside the United States. Living and working within countries, even when living in situations of tremendous relative comfort, is vastly different from parachuting in to conduct studies or field visits. No course or long-distance project supervision can as effectively reveal the true nature of the challenges of global health and development initiatives as can living and working in another culture for extended and formative periods. My perspectives on different places described here are deeply subjective and have been shaped not only by the sometimes dramatic political events that occurred during the times I was working in a certain place but also by the people I got to know.

However, the fact that nearly all of the stories in this book are from around the world in no way implies that I fail to see the gross inequities in the United States and the U.S. health system. Far from it. My father’s father was a member of the IWW (International Workers of the World) and a lifelong union activist who transmitted to me his conviction that a truly inclusive democracy in the United States would require much greater substantive equality. As inequalities have continued to grow in the United States since my youth, I hope that some of the reflections in this book can encourage people in the United States to consider the way we might treat health and health care within the United States differently if we were to apply a human rights framework to some of the enormous social challenges we face.

I also want to highlight the role that the United States plays in shaping possibilities for enjoying health and related rights throughout the world. For example, in 2014, I was in Argentina when it again defaulted on its debt because of a small group of holdout creditors—vulture funds—and a U.S. court applied its parochial vision of what the “rule of law” required without any consideration of the equity effects of such a ruling or the perverse narrative it was creating regarding sovereign debt accumulation and payment.²¹ The Human Rights Council condemned the activities of the vulture funds and called for a multilateral framework for sovereign debt restructuring.²² Perhaps because I could easily have grown up in Argentina instead of the United States, the prevalent U.S. discourse around the events—that those were “the rules of the game” to get access to U.S. equity markets and “otherwise Argentina could go elsewhere and pay higher prices”—was a particularly acute illustration of how privilege justifies itself through the narratives we create about ourselves, not just at individual levels but also at societal levels, and that the two are inextricably intertwined, as I discuss throughout these pages.

The Structure of This Book

The rest of this book is divided into two main sections and a conclusion. In Part I, “Starting Points,” I suggest that a transformative engagement between health and human rights requires rethinking conventional approaches to human rights, as well as to health. I came to public health not from the perspective of healing, as many others do, but from a traditional lawyer’s training in human rights and with a profound concern for social justice. At the time, in the early 1990s, the human rights movement was almost exclusively focused on civil and political rights violations. But as some others did, I grew to feel that if the movement did not address social injustice, it would remain a marginal discourse for social emancipation.

In Chapter 1, beginning with a description of one of the first cases of torture that I ever worked on in Mexico, I set out thoughts about what torture does to us as human beings—the nature of suffering it inflicts and how it strips away the possibility of self-government, agency, and therefore human dignity. The concept of the equal dignity of all human beings, of the need to see other people as ends in and of themselves rather than as instruments for the advancement of our own or others’ aims, is the core of a rights framework. And that simple concept—of according all people equal dignity—has enormous implications for the way our societies and world are organized.

I go on to explore the links among human rights, dignity, and health, beginning with a three-pronged paradigm that Jonathan Mann and colleagues set out in the early 1990s, at the beginning of what has become known as the health and human rights movement. There are serious health consequences to torture, and unfortunately the historical involvement of health professionals in torture and other abuses is all too common. Indeed, some forms of abuse in the health sector rise to the level of torture or cruel, inhuman, and degrading treatment.

However, most violence that affects women’s and children’s health is in the home or in private spaces close to home. Therefore, as human rights law, and domestic law in many countries, has recognized, to address the kinds of violence and suffering that women and children face, regulation of power must extend beyond the public sphere and into the private sphere of the home. Yet the way the public continues to think about human rights often continues to be too limited. If torture shatters the worlds that people construct, these abuses of children, especially girls and sexual minorities, sometimes disabled, often prevent the victims from ever fully developing a sense of themselves as full subjects of rights.

Chapter 2 begins with another example from my early days of human rights advocacy work in Mexico. During the course of investigating an atrocity by the Mexican military in a remote region of Chihuahua state, I found myself watching an infant die. Stunned by the mother’s lack of indignation over her child’s death, I argue that extreme poverty cannot be seen as a “background condition” but should be understood as just as much a violation of human rights as acts directly committed by state agents. The powerlessness wrought by extreme poverty is as devastating as that inflicted through torture, and the effects are the foreseeable result of human decisions about policies and programs at multiple levels. Yet even when there are obvious health consequences, we still too often fail to appreciate the human causality and state responsibility that lie behind these deprivations of dignity.

International law has advanced significantly in terms of eroding unhelpful distinctions between civil and political (CP) rights and economic, social, and cultural (ESC) rights, as has the jurisprudence of various national courts. Indeed, in both international and some national law there is now a concept of minimum essential levels of ESC rights necessary to life with dignity, as well as implications for leveling the playing field. However, just as with reframing state obligations regarding the private sphere, there is still a long way to go to change public understanding of ESC rights so that they are seen as real rights. I argue that to do so requires examining our assumptions about prevailing neoliberal economic paradigms and state responsibilities, as well as about the ways in which power prevents people from exercising freedom in practice and the consequent implications for how we think about justice.

In Chapter 3, I argue that conventional approaches to medicine and public health also require rethinking. Describing an incident that occurred early in my public health career in Haryana, India, I illustrate the limitations to empowering people through conventional public health approaches that treat social determinants—such as caste, gender, and racial hierarchies—as “distal,” or background, factors, as opposed to the proximate behavioral causes on which most interventions as well as research focus.

Applying a human rights framework does not and cannot mean ignoring the need for access to biomedical advances. As Paul Farmer argues, the right to health must include the “right to sutures”—and blood, essential medications, and other supplies.²³ At the same time, a meaningful HRBA also calls for contextually grounded strategies to chip away at the power structures that perpetuate patterns of illness and suffering. These are all too often relegated to background conditions that cannot be touched in the short term in public health planning and policies; as a result, they never get addressed. After distinguishing between a right to health and the application of an HRBA or a human rights framework to health, which includes these social determinants that relate to other rights, I explore how such an approach, which builds on work in social medicine and social epidemiology, demands a fundamental shift in the way that health is generally understood in mainstream medical and public health practice.

In Chapter 4, starting with a story from the remote jungle “department” (state) of El Chocó in Colombia, I emphasize the significance of health systems within an HRBA to health. Health is largely a result of social determinants that go beyond the health sector. However, health systems reflect the patterns of discrimination and inequalities found in the overall society; alternatively, they can also help to facilitate greater substantive democracy. Health systems lie at the core of the realization of the right to health, as well as of HRBAs to health. In a rights framework, a health system is understood as a core social institution—“akin to the justice system or a fair political system”—rather than a delivery apparatus for goods and services.²⁴ So, for example, a society in which rich and poor alike feel that the health system is fairly prioritizing their needs is a more just society than one in which rich and poor are treated in different institutions with different standards of care—simply because of access to money.

A fundamental distinction of an HRBA to health systems is a focus on accountability. Arguing that an HRBA requires a “circle of accountability,” Chapter 4 describes how such an approach would differentiate it from a conventional approach at each stage of the policy cycle, from the initial situational analysis through planning and budgeting processes to program implementation and monitoring and review mechanisms to remedies.²⁵ Returning throughout the chapter to the context of Colombia, I outline a systemic judgment by the Colombian Constitutional Court in 2008, which called for restructuring the health system along rights principles. I highlight the importance of that historic judgment, especially to the extent that it arguably destabilized entrenched assumptions and interests in the Colombian health sector and triggered a chain of varied effects. Throughout the book, I emphasize that applying a human rights framework in a transformative way aims to change dynamics of relationships between the public and the state to a relationship of entitlement and obligation and to dis-entrench patterns of power and privilege, which systematically deprive some people of their health and other rights. At the same time, I note challenges for meaningful change that continue to exist in the Colombian context.

In Part II, “Applying Human Rights Frameworks to Health,” I examine specific aspects of HRBAs to health, and human rights frameworks more broadly, and I make more explicit how human rights frameworks can be applied by different actors to produce social transformation, providing examples throughout. As Part II develops human rights concepts introduced in Part I, readers may find these chapters somewhat more academic than those in Part I. However, it is precisely my intent that the explanation and application to the stories I introduce will make these legal concepts more accessible to nonlawyers. Human rights–based approaches require a broad, multidisciplinary response that depends on all of us, whether we are legal, development, or public health practitioners; professionals as well as ordinary citizens.

A fundamental part of the argument I make in these pages is that the divide between theory and practice is deeply fallacious; how we think about global health problems shapes what we do about them. It is useful to analyze specific conceptual elements of HRBAs to unpack what they imply in practice and to determine where both the theoretical and practical dilemmas lie. In showing how human rights tools and strategies to health have been deployed in concrete contexts by different actors, I note that many examples are partial, effecting only incremental changes. Yet that need not be discouraging, as changes in certain choice situations and relationships of power can trigger a cascade of changes, which in turn create meaningful improvements in the enjoyment of health and other rights by many other people.

Chapter 5 begins with a story of a maternal death in Sierra Leone, one of the poorest countries on earth and which was ravaged by a brutal civil war for many years and most recently has been decimated by Ebola. In what may seem a somewhat unlikely context, I return to the importance and meaning of accountability within a human rights framework. Perhaps what a human rights framework uniquely adds to other work in public health that is focused on social determinants lies precisely in the definition of relationships between rights-holders and duty-bearers. This identification of duty-bearers, in turn, permits the creation of a framework for accountability, including judicial recourse.

I stress, however, that accountability cannot mean adding remedies to broken systems. Real accountability calls for changes not only at multiple levels of decision making regarding health or, as described earlier, the establishment of a circle of accountability across the policy cycle but also across different relationships of entitlement and obligation: providers and patients; programmers and policy makers; policy makers and parliamentarians; elected governments and citizens. Further, in this chapter I explore not just different mechanisms but also different aspects of state obligations for taking positive measures in human rights; that is, for what is the state accountable? How much effort is the state expending? And how it is going about the process?

In Chapter 6, I return to Latin America. Through a story of rural health promoters from Puno, Peru, I explore the complex and challenging subject of participation in health. A fundamental aspect of a human rights framework is that people are not treated as passive recipients of goods and services but as participants in decisions that affect their well-being. I argue in this chapter that to understand meaningful participation in a human rights framework requires understanding where power resides and how power operates to keep people from challenging inequity, even when their health and well-being are at stake.

Active participation depends on the conditions for pluralistic democracy in a liberal state, including transparency and access to information. It is important to remember that participation also includes the voice of health professionals who are themselves often silenced within hierarchical and punitive health systems. However, I argue that effective participation that leads to mobilization for transformational change also requires going beyond liberal understandings of power to challenge how discourses and agendas, as well as boundaries for participation, are defined. Indeed, human agency and dignity are constrained in many ways that are invisible, and setting health and other priorities based on people’s subjective assessments of their own suffering, as is done in conventional public health, may in fact entrench unfair background conditions that reduce people’s own expectations for their lives. Ultimately, enabling people to participate in ways that challenge their own internalized subordination calls for the development of critical consciousness.

In Chapter 7, based on a discussion of a young, disabled woman who died of pregnancy-related complications in KwaZulu-Natal, South Africa, I examine the implications of a rights framework’s demands that equality and nondiscrimination be placed at the center of a public health and development agenda. The South African context illustrates sharply how intersecting forms of discrimination, based on race, disability, gender, and other axes of identity, conspire against diverse people living in poverty to deprive them of life choices.

A focus on equality has dramatic implications for public health and mainstream development. Conventional public health all too often remains in the thrall of health maximization, which measures “success” using averages and aggregate statistics, often based on achieving the “biggest bang for the buck.” From a human rights perspective, national averages are not sufficient in measuring impact; disparities among populations can be more revealing of the obstacles underlying the achievement of well-being for certain historically disadvantaged groups in society.

This chapter further explains that the principle of “equality” in human rights has different faces. Formal equality requires equal treatment for similarly situated people and is closely related to demands for universalization of services. However, substantive equality acknowledges that in fact all people do not have equal starting points, and therefore different measures are required to achieve equal enjoyment of health and other rights. Conventionally, the human rights community has been overly reticent about taking stands regarding social inequality, which is a profound social determinant of population health. Not only is there increasing empirical evidence that social inequality is bad for our health, but I argue that the equal concern and respect for people, which meaningful substantive equality requires, demands as a normative matter certain degrees of economic equality and the macroeconomic policies that achieving such conditions would entail.

Yet fairness in health is not simply a matter of addressing income inequality or social exclusion, as it might be in relation to other rights; it also depends on considering other factors, such as the severity of a person’s illness. After all, we have some notion that very sick people should be given priority in terms of resources over people who are suffering from relatively trivial conditions. Similarly, we consider comparative effectiveness of different interventions because to ignore efficiency considerations entirely has not just economic consequences but also equity consequences in terms of how many people end up suffering. Because even reasonable people will disagree on the relative weight of these different factors, addressing inequality in health requires a process that enables meaningful deliberation among those affected.

Chapter 8 examines human rights obligations beyond borders and begins with the story of a woman’s death in a district hospital in Tanzania, a highly aid-dependent country. So many of the causes of people’s poverty and ill-health in the global South are a result of global institutional arrangements and decisions taken beyond their national borders—in Washington, D.C.; New York; London; and even Seattle, Washington. Human rights law generally considers the relationship between people and national governments, which by itself can obscure the important actors and forces that have influence that cuts across national borders and boundaries. But this has begun to change.

This chapter explores differing concepts of global accountability and health governance, as well as a variety of emerging efforts to hold donor states responsible for extraterritorial obligations, in order to make advances with regard to the health of the poor in the global South. I discuss not only traditional forms of international aid cooperation but also the role that unjust institutional arrangements play in systematically putting some countries at a disadvantage in relation to others. I close the chapter by returning to a fundamental theme of the book: What is at stake in competing narratives of “sustainable development,” which will be the future development agenda?

Finally, in the Conclusion, I reflect on what it can mean to apply a human rights framework to health—as opposed to other frameworks for social change—and why people who are concerned with social justice should care. Through the story of a boy I met in a psychiatric hospital in Argentina, I come back to the main message of this book: With the concerted efforts of people around the globe, another world is possible.

There is no recipe or magic bullet for the realization of human rights to health for all people. Throughout this book, I emphasize that progress can be and has been made. But meaningful human rights frameworks and HRBAs are about social transformation, which demands struggles for power and not “pleas to have human rights conferred” by the state.²⁶ Those struggles are inherently political, messy, and complex. Transformative change does not follow a linear path. Indeed, the ever-increasing array of toolkits to “show people how to apply HRBAs” will end up being counterproductive if they imply that to do so is akin to following a generic, technocratic formula. As I suggest in the later chapters, versions of human rights already coexist far too comfortably with neoliberal economic paradigms and are easily palatable to those who benefit from the status quo. If HRBAs to health, and human rights frameworks more generally, are to fulfill their promise in changing the systems that perpetuate inequality and injustice, they must subvert entrenched and insulated institutions and what have become virtually hegemonic views of the world. If rights are to be useful, they should play a role in destabilizing both norms and practices that deny certain people equal respect and concern. This book is not a manual on HRBAs to health; it is, on the contrary, a call to hold onto the radical possibilities of applying human rights frameworks to health.

When I began my work on health and human rights, an eminent international expert dismissively informed me that to spend my time promoting a legally claimable right to health—and maternal health in particular—was as useful as dedicating my life to knitting coats out of butterfly wings. As we see in these pages, a lot has changed in the twenty years since that moment. But there is still an enormous amount of work to do. If we collectively hold onto the emancipatory potential of using a human rights paradigm to promote social justice, I am convinced that we can transform, albeit incrementally and with inevitable setbacks, the landscape of global health and rights.

Concluding Reflections

My mother never failed to say “there but for the grace of God go I” whenever we passed a homeless person on the street in New York City. I only came to realize much later that, in her case, it was not a way of eliding the social and economic policies that distinguished her—our—fortune from theirs. Rather, it was a practice of mindfulness, an acknowledgment of the human being in front of her, and a reminder to be compassionate on a daily basis.

In the 1980s, when then-President Ronald Reagan’s deinstitutionalization of patients in psychiatric hospitals, coupled with cuts in social services, resulted in approximately 140,000 mentally ill people living on the streets in cities across the United States, my mother’s reflective comments took on a special significance.²⁷ My brother had long struggled with mental illness, moving in and out of private institutions. In looking into many of the faces of the people who found themselves suddenly living on the street, it was impossible for me not to reflect on the arbitrary twists of fate that led to the possibility of a life of dignity for my brother compared to a life of squalor, hopelessness, and degradation faced by so many others. It was impossible to maintain the pretense that there was anything essentially different about my brother—or about us as a family—that justified the difference in outcomes, or conferred protection from the fear and loathing with which people with mental illness are routinely regarded in the United States, as well as in other places around the globe.

I argue throughout the rest of this book that defining health as a question of human rights forces us to examine how we make sense of and respond not only to our own suffering or that of our close family and friends but also to that of others, including those living very far away. As humans, we instinctively try to give meaning to our losses as well as to our fulfillment, to create narratives about what has happened to us. Too often we use a kind of self-interested, albeit un–self-conscious, logic about when suffering is “bad luck,” when there is some “implication that God was a party to the outcome,” or when tragedy is simply inevitable because that is the way things are “in those places” or “those cultures.”²⁸ I want us to question that logic.

For example, when U.S. missionary Dr. Kent Brantly came back from Liberia with Ebola in 2014 and was cured at Emory University Medical Center, he gave a news conference thanking God for his survival.²⁹ Undoubtedly inadvertently, the implication was that God may not care so much about the thousands of Liberians and West Africans who did not survive. But God did not cure Dr. Brantly; what cured Dr. Brantly was excellent medical care, coupled with probably an already stronger immune system than many undernourished people in West Africa had.

And I want us to question when narratives are created and too often embedded in laws, around whose suffering matters. For example, a thirteen-year-old girl is sexually assaulted by her uncle, but for her to choose to have a life plan that does not include the fetus she was forced to carry is “evil and selfish,” imposing suffering on the innocent “child.” And isn’t it possible that a sex worker—female, male, or trans—also suffers when raped and has a right to bodily integrity, as well as labor protections?

But I also want to be very clear: I do not believe that human rights are fundamentally at odds with all religious traditions. There is no question that pain, sorrow, and suffering are part of this life, or a cycle of lives. I do not reject the notion that there can indeed be a value in suffering.³⁰ Any parent knows that it is a mistake to try to protect a child from all disappointment and pain. After all, resiliency is crucial to our development as human beings. The needless suffering caused by unfairness in our societies and our world is the subject of this book. And unlike the “glad tidings of great joy” promised in the Bible or other blessings and enlightenment that entice people in an afterlife, a human rights framework emphasizes a universal claim to dignity in this world. It is not redemption but justice that I argue a human rights framework offers.

At the same time, taking seriously the ways in which power structures suffering within and between countries requires rethinking narrow human rights frameworks as relating only to a small slice of civil and political issues, a view that continues to prevail in much of the world. Taking suffering seriously calls for us to challenge what those conceptions of human rights say about our understanding of the role of the state, the demands of justice, and, ultimately, our ways of being together in this broken world.