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Power, Suff ering, and
the Struggle for Dignity
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PENNSYLVANIA STUDIES IN HUMAN RIGHTS
Bert B. Lockwood, Jr., Series Editor
A complete list of books in the series is available from the publisher.
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Power, Suff ering, and
the Struggle for Dignity
Human Rights Frameworks for Health and Why Th ey Matter
Alicia Ely Yamin
Foreword by Paul Farmer
UNIVERSITY OF PENNSYLVANIA PRESS
PHILADELPHIA
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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, suff ering, 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 ser vices
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—d c23
2015017697
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C o n t e n t s
Foreword vii
Paul Farmer, M.D.
Preface xi
List of Abbreviations xvii
Introduction. How Do We Understand Suff ering? 1
PART I. STARTING POINTS
Chapter 1. Dignity and Suff ering: Why Human Rights Matter 25
Chapter 2. Th e Powerlessness of Extreme Poverty: Human Rights
and Social Justice 49
Chapter 3. Redefi ning Health: Challenging Power Relations 73
Chapter 4. Health Systems as “Core Social Institutions” 99
PART II. APPLYING HUMAN RIGHTS FRAMEWORKS TO HEALTH
Chapter 5. Beyond Charity: Th e Central Importance of Accountability 131
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vi Contents
Chapter 6. Power and Participation 157
Chapter 7. Shades of Dignity: Equality and Nondiscrimination 180
Chapter 8. Our Place in the World: Obligations Beyond Borders 206
Conclusion. Another World Is Possible 229
Notes 251
Glossary 293
Index 297
Ac know ledg ments 313
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F o r e w o r d
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 fi rst 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 fi eld 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 oft en 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, Suff er-
ing, 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 fi rst issue of the journal, I wrote about having been “part of an eff ort to
provide basic services—m edical care, primary education, clean water, even
exhumation and proper burial for the victims of mass violence—in Latin
America, Siberia, and inner-c ity Boston. Th e 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 ser vices, 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 commu-
nities and homes.
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viii Foreword
Our shared perspective on national and global inequities, on the “pathol-
ogies of power” as I have called them and the suff ering they produce reaches
beyond outrage to the desire to forge solutions. Although working in diff er-
ent professions, we both remain committed to the conviction that the root
causes of poverty and ill health are inextricably linked to questions of jus-
tice, including the right to health. We share deep frustration with those lim-
ited conceptions of justice which would restrict the domain of human rights
to a slim portion of civil and pol itic al 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.”
Th is theme of the connection between the power relations between the
so- called “North” and “South” runs throughout Alicia’s profoundly 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. Th is book deft ly illus-
trates the core purpose of a human rights- based approach— eradicating the
suff ering arising from dramatic in e qual ity within and between nations.
In Power, Suff ering, and the Struggle for Dignity, Alicia makes the argu-
ment 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—b oth in terms of substance and
pro cess. Alicia is quick to note that many human rights- based approaches
have “only brought about incremental changes.” But she explains that in-
cremental 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 mean-
ingful improvements in the eff ective enjoyment of health and other rights
by many other people.”
Power, Suff ering, and the Struggle for Dignity, achieves an accessibility rare
in academic literature. Her writing transcends the academy and, true to hu-
man rights practice, reaches out to an audience that does not need to be priv-
ileged 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 pol itic ally determined. Th ey illustrate power relations in the
government, in the home, and in relationships. Her text brings a frank re-
framing of the dynamics of power and of suff ering.
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Foreword ix
Power, Suff ering, and the Struggle for Dignity, is not, as Alicia notes, a
manual on human rights-b ased approaches to health. Th ose of us working
in medicine and public health know that manuals off ering 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-b ased approaches can be applied to “desta-
bilize and disentrench” practices and systems that perpetuate in e qual ity and
injustice. She calls on readers to combat the apathy that so oft en 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, Suff ering, and the Struggle for Dignity,
leads us toward; rather, it is the world imagined when the Universal Decla-
ration of Human Rights was draft ed nearly seventy years ago: a social and
international order in which everyone can enjoy health and other essential
rights.
Paul Farmer, M.D.
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