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
