Power, Suffering, and the Struggle for Dignity. Alicia Ely Yamin
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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.
Abbreviations
An asterisk beside an abbreviation indicates that the term also appears with a fuller explanation in the Glossary.
| *AAAQ | availability, accessibility, acceptability, and quality (of health facilities, goods, and services) |
| ANC | African National Congress |
| ARV | antiretroviral |
| CCBRT | comprehensive community based rehabilitation |
| CBA | cost-benefit analysis |
| CCM | Chama Cha Mapinduzi |
| *CEA | cost-effectiveness analysis |
| *CEDAW | Convention on the Elimination of All Forms of Discrimination Against Women |
| *CEDAWCommittee | UN Committee on the Elimination of Discrimination Against Women |
| *CESCR | UN Committee on Economic, Social and Cultural Rights |
| CESR | Center for Economic and Social Rights |
| CLAS | Committees for the Local Administration of Health Care |
| *CP | civil and political |
| *CRPD | Convention on the Rights of Persons with Disabilities |
| CRR | Center for Reproductive Rights |
| *DALYs | disability-adjusted life years |
| DFID | British Department for International Development |
| DPG | Development Partners Group |
| DRI | Disability Rights International |
| ELN | Ejército de Liberacion Nacional |
| *EmOC | emergency obstetric care |
| *ESC | economic, social, and cultural |
| EZLN | Ejército Zapatista de Liberación Nacional (Zapatista Army of National Liberation) |
| FARC | Fuerzas Armadas Revolucionarias de Colombia |
| FCGH | Framework Convention on Global Health |
| FGM | female genital mutilation |
| HRBA | human rights–based approach |
| *HRC | Human Rights Council |
| ICCPR | International Covenant on Civil and Political Rights |
| *ICESCR | International Covenant on Economic, Social and Cultural Rights |
| *ICPD | International Conference on Population and Development |
| IFP | Inkatha Freedom Party |
| IMF | International Monetary Fund |
| IPV | intimate partner violence |
| ITNs |
insecticide treated bed nets
|