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

moving book. Alicia describes this text as a call to remake our institutions and our social and legal arrangements at national and global levels. We owe as much to one another as human beings with equal dignity. This book deftly illustrates the core purpose of a human rights-based approach—eradicating the suffering arising from dramatic inequality within and between nations.

      In Power, Suffering, and the Struggle for Dignity, Alicia makes the argument that the divide between theory and practice is deeply misleading; rather, she shows us repeatedly that the ways in which we think about global health problems shapes what we do about them—both in terms of substance and process. Alicia is quick to note that many human rights-based approaches have “only brought about incremental changes.” But she explains that incremental changes need not be a sign of failure, because a small change in a relationship of power can “trigger a cascade of changes, which create meaningful improvements in the effective enjoyment of health and other rights by many other people.”

      Power, Suffering, and the Struggle for Dignity, achieves an accessibility rare in academic literature. Her writing transcends the academy and, true to human rights practice, reaches out to an audience that does not need to be privileged to be included. Her stories highlight the social construction of power; they illustrate how the unequal share of wealth, knowledge, and health care is socially and politically determined. They illustrate power relations in the government, in the home, and in relationships. Her text brings a frank reframing of the dynamics of power and of suffering.

      Power, Suffering, and the Struggle for Dignity, is not, as Alicia notes, a manual on human rights-based approaches to health. Those of us working in medicine and public health know that manuals offering technocratic solutions to deeply entrenched inequitable systems do not work. Rather—ranging from Colombia to Uganda and Peru to South Africa—Alicia provides examples of how human rights-based approaches can be applied to “destabilize and disentrench” practices and systems that perpetuate inequality and injustice. She calls on readers to combat the apathy that so often engulfs us and to question the inevitability of institutional arrangements and approaches to health and development, as well as approaches to human rights. It is not a newly envisioned world that Power, Suffering, and the Struggle for Dignity, leads us toward; rather, it is the world imagined when the Universal Declaration of Human Rights was drafted nearly seventy years ago: a social and international order in which everyone can enjoy health and other essential rights.

       Paul Farmer, M.D.

       Preface

      Growing up, I often thought about the day my mother was born. My mother was an extraordinarily beautiful woman and it was only when I would sit on the edge of the tub in her bathroom, watching her get ready to go out and as she brushed her hair, and the light shifted, that the telltale scars of the forceps on her forehead were visible, evoking thoughts of the struggle her mother must have had. She’d told me the story so many times that I knew it by heart. The pregnancy had been relatively easy and nothing portended how unimaginably awful the delivery was to be. My grandfather was a tall, sturdy man. But my grandmother was a petite woman and her pelvis simply couldn’t open broadly enough for my mother to emerge well. She had what we would call now a protracted labor, which seems an unduly cold and clinical term for the agony she must have felt, pushing for hours, hours turning into days, feeling as though her body were breaking in two, the child inside her slowly being starved of oxygen, the odor of blood mixed with fear-drenched sweat and feces overcoming my grandmother who was, in every other respect, the daintiest and most proper of women. It was before the advent of cesarean sections or my mother would have been born that way, but finally the doctor must have been able to reach up far enough to grab her forehead with the long tongs of the forceps, pulling and guiding her into the world. My grandmother had lost a lot of blood; she’d come very close to dying. She was told she could never have another child. That was my mother’s original sin—her size, her very birth—and of course the fact that she was a girl.

      At the time, I had no idea so much of my life would be devoted to advancing women’s sexual and reproductive health and rights, and maternal health in particular. But the toll of that near-miss and the context of both a family and a world that continue to value male children more than female children played a tremendous role in my grandmother’s life, my mother’s life, and my own.

      This book is in many ways a narrative birthed in anger. It is a book saturated with indignation at the fact that so many girls across the global South continue to be robbed of basic life choices; that women everywhere continue to be defined not by their humanness but by their sexual otherness; and that, across the globe, so many girls’ and women’s voices still are not heard and their dignity not valued—simply because they were born female.

      These pages are also filled with outrage at the scandalous disparities in health and other fundamental rights that plague the globe, as well as at the enormous suffering wrought by avoidable poverty-related conditions. No issue demonstrates this more than maternal mortality, which shows the greatest disparities between the global South and the economic North—much greater than HIV/AIDS or child mortality, for example. Poor women in poor, and lower middle-income countries are overwhelmingly the ones who die from maternal causes.

      But this book is also filled with hope. I deeply believe that we can transform our world and, indeed, that combining the tools of human rights and public health can help us to do so. I have witnessed the impacts that applying human rights frameworks and strategies can have on people’s health—and lives—and I share some of those insights in these pages. I have no doubt we can achieve far more social justice in this world if and when human rights are widely applied to health issues in bold and transformative ways.

      The initial idea for this book grew out of a series of articles that I published as executive editor for the Critical Concepts section of Health and Human Rights: An International Journal (hereafter referred to as the Health and Human Rights journal) between 2008 and 2010. In 1994, Jonathan Mann, the founding director of the François-Xavier Bagnoud Center for Health and Human Rights at Harvard University, launched the Health and Human Rights journal to provide an inclusive forum for rigorous discussion and debate on the relationships between health and human rights. Over the following two decades, so-called human rights–based approaches (HRBAs) flourished in health and development organizations and the normative development of health rights advanced tremendously. In 2007, Paul Farmer had the bold vision of adopting a new format for the Health and Human Rights journal, converting it into an online forum for activists, scholars, and practitioners to continue the sort of dialogue that Mann had envisioned. I was privileged to be invited to be part of that undertaking.

      With Farmer and the other editors, I proposed that we explore the elements of HRBAs to health systematically in the first set of issues under this new leadership, and examine more broadly what it could mean to apply a human rights framework to health. The impetus for reshaping the Health and Human Rights journal and adopting this approach was the paradox that the world faced, and continues to face. On the one hand, human rights is now the dominant language for claims of human emancipation around the world, and human rights theory and practice have permeated many domains beyond the law, including health. On the other hand, as already noted, the landscape of global health is marked by vast inequities and brutal deprivation, and it is not yet clear to policy makers and health practitioners, or to those affected, how applying human rights concepts and strategies will change the lives of the millions of people who are suffering.

      I believed then, and I continue to believe, that human rights provides one—but certainly not the only—critical framework through which to advance social transformation, and social justice in health in particular. In those initial issues of the revamped Health and Human Rights journal we explored the implications of adopting human rights frameworks relating to health for policy makers and programmers, for activists and advocates, for researchers and service providers, and for the many different communities and people around the world whose lives are affected. In my Critical Concepts articles—which became the basis for this book—I sought to inspire critical thinking not just about the fields of medicine and public health but also about how to adapt and expand traditional human rights