Power, Suffering, and the Struggle for Dignity. Alicia Ely Yamin
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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.