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

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       Power, Suffering, and the Struggle for Dignity

      PENNSYLVANIA STUDIES IN HUMAN RIGHTS

      Bert B. Lockwood, Jr., Series Editor

      A complete list of books in the series is available from the publisher.

       Power, Suffering, and the Struggle for Dignity

       Human Rights Frameworks for Health and Why They Matter

      Alicia Ely Yamin

      Foreword by Paul Farmer

      UNIVERSITY OF PENNSYLVANIA PRESS

      PHILADELPHIA

      Copyright © 2016 University of Pennsylvania Press

      All rights reserved. Except for brief quotations used for purposes of review or scholarly citation, none of this book may be reproduced in any form by any means without written permission from the publisher.

      Published by

      University of Pennsylvania Press

      Philadelphia, Pennsylvania 19104-4112

       www.upenn.edu/pennpress

      Printed in the United States of America on acid-free paper

      10 9 8 7 6 5 4 3 2 1

       Library of Congress Cataloging-in-Publication Data

      Yamin, Alicia Ely, author.

      Power, suffering, and the struggle for dignity : human rights frameworks for health and why they matter / Alicia Ely Yamin.

      pages cm. — (Pennsylvania studies in human rights)

      Includes bibliographical references and index.

      ISBN 978-0-8122-4774-9 (alk. paper)

      1. Right to health. 2. Human rights—Health aspects. 3. Health services accessibility. 4. Medical policy—Moral and ethical aspects. 5. Public health—Moral and ethical aspects. 6. Women—Medical care. 7. Poor—Medical care. I. Farmer, Paul, 1959– writer of preface. II. Title. III. Series: Pennsylvania studies in human rights.

      K3260.3.Y26 2016

      323—dc23

      2015017697

       Contents

       Foreword

       Paul Farmer, M.D.

       Preface

       List of Abbreviations

       Introduction. How Do We Understand Suffering?

       PART I. STARTING POINTS

       Chapter 1. Dignity and Suffering: Why Human Rights Matter

       Chapter 2. The Powerlessness of Extreme Poverty: Human Rights and Social Justice

       Chapter 3. Redefining Health: Challenging Power Relations

       Chapter 4. Health Systems as “Core Social Institutions”

       PART II. APPLYING HUMAN RIGHTS FRAMEWORKS TO HEALTH

       Chapter 5. Beyond Charity: The Central Importance of Accountability

       Chapter 6. Power and Participation

       Chapter 7. Shades of Dignity: Equality and Nondiscrimination

       Chapter 8. Our Place in the World: Obligations Beyond Borders

       Conclusion. Another World Is Possible

       Notes

       Glossary

       Index

       Acknowledgments

       Foreword

      My profound admiration and respect for Alicia Ely Yamin and her work in health and human rights goes back many years, beginning well before our work together as editors of the journal Health and Human Rights. But when we each penned our first contributions as editors for the journal in 2007, our shared experiences, indignation, and understandings about the inequities in the world became even more evident.

      Alicia is not just an extraordinary leader in the field but someone who has been in the trenches. She speaks authoritatively because she understands the ways in which cycles of poverty and disease become ingrained in poor communities across the globe, as the stories in this remarkable new book attest. Too often I have found that many human rights lawyers remain in the realm of the abstract, failing to address the realities of what health practitioners—and impoverished patients—face every day. In Power, Suffering, and the Struggle for Dignity, Alicia does exactly this, showing us what a human rights framework can and should mean.

      Alicia and I, along with many of our colleagues, share the same sense of outrage at global inequities, and the need to enact transformative change. In our first issue of the journal, I wrote about having been “part of an effort to provide basic services—medical care, primary education, clean water, even exhumation and proper burial for the victims of mass violence—in Latin America, Siberia, and inner-city Boston. The people we served had neither a language nor a culture in common. What they had in common, by and large, was poverty.” Alicia may not have provided direct services, but it is apparent from this text how much time she has spent with impoverished women in labor and delivery rooms throughout the world, as well as in their communities and homes.

      Our shared perspective on national and global inequities, on the “pathologies of power” as I have called them and the suffering they produce reaches beyond outrage to the desire to forge solutions. Although working in different professions, we both remain committed to the conviction that the root causes of poverty and ill health are inextricably linked to questions of justice, including the right to health. We share deep frustration with those limited conceptions of justice which would restrict the domain of human rights to a slim portion of civil and political liberties. But importantly, Alicia’s critiques of traditional human rights theory in Power, Suffering, and the Struggle for Dignity, emerge from within and propose alternative pathways for moving beyond frameworks that, in her words, “sit all too easily with neoliberalism.”

      This theme of the connection between the power relations between