Читать книгу Power, Suffering, and the Struggle for Dignity - Alicia Ely Yamin - Страница 8

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 frameworks and tools to meaningfully advance people’s health at national and global levels. Human rights means many things to many people and, as I reiterate throughout this book, we need to hold onto bold rights claims to transform the world and not allow HRBAs to become yet another formulaic approach to health programming.

Although this book is a continuation of the thinking that I began in those journal articles, it also draws heavily on other conceptual thinking and work that I have done in the field. Consequently, there is a much greater emphasis here on women’s and children’s health and rights, and on sexual and reproductive, and maternal health in particular, because during the more than twenty years that I have been in this field, I have worked overwhelmingly on these issues. I have added to the themes addressed in the journal articles by including five new chapters and by substantially revising the articles that were originally published in the journal.

This book speaks in a much more personal voice than did the Critical Concepts articles. Throughout these pages, I have included stories from my personal experience because I believe the universal elements of what it means to apply a rights framework to health—the multidimensional and embedded aspects of rights enjoyment, as well as deprivations—can frequently be better understood through the stories of particular individuals than through the staggering, and often numbing, statistics of global inequalities. And sometimes identifying with others’ stories enables us to piece together our own stories and in turn to understand more clearly what applying human rights requires of each of us in terms of being ethical individuals in this interconnected world.

I have spent much of my professional life interviewing victims of human rights deprivations, among other things, in an effort to understand better what leads to women dying in pregnancy and childbirth and what happens to the families when they do die of maternal causes. My own grandmother easily could have died when she was giving birth to my mother, and I have often thought of that, of how different my own family’s story could have been, when interviewing others.

I thought of this again when I met Rediet in Ethiopia, who, at the age of eleven, had lost her mother, Meron. In 2013, Rediet, now eighteen, was stunningly beautiful, with high cheekbones setting off her large, dark eyes and perfectly shaped lips. Over a couple of hours, she and her brother spoke disconsolately about everything they had lost when their mother died, including their sense of themselves and their dreams for their lives. They both had to drop out of school, Rediet’s brother forsaking hopes of being a civil servant and Rediet marrying a man she had no fondness for and bearing his child to spare the family the expense of having to feed her. Rediet and her brother also went on at length about how beautiful Meron had been, and when I noted I was sure her mother would have told her how beautiful she too was, Rediet burst into tears I recognized well, tears of grief mixed with love, of hope she had buried long ago mixed with irredeemable loss. We talked for quite a while longer about being daughters, and mothers, and women who both wanted agency and dignity in our lives. The injustice in her life was unbearable to us both, and we cried together—so much so that the young Ethiopian data collectors I was training asked how I could do this kind of work for so long if it affected me so deeply. “It’s when it stops affecting you, when you stop thinking of them as people, and only as research subjects, that you should stop doing this work,” I replied.

It is indeed a peculiar kind of work though, to spend so much time listening to the stories of people’s anguish and suffering and to have strangers from very different backgrounds share some of the most intimate and painful details of their lives. It is not a privilege or a responsibility that I take lightly. It is no exaggeration to say that these stories are from some of the women, men, and children who have taught me what the condition of being human means. And it is through the experiences they have shared with me that I have come to believe that in a real sense having and exercising rights makes us fully human. If only by telling some of their stories in these pages, I hope I can give these different individuals and their families some small recognition.