A Fraught Embrace: The Romance and Reality of AIDS Altruism in Africa

299 Pages·2017·11.486 MB·English

by  Ann Swidler, Susan Cotts Watkins

A Fraught Embrace
PRINCETON STUDIES IN
CULTURAL SOCIOLOGY
Paul J. DiMaggio, Michèle Lamont,
Robert J. Wuthnow, and Viviana A. Zelizer,
Series Editors
A list of titles in this series appears at the back of the book
A FrAught
EmbrAcE
The Romance & Reality of
AIDS Altruism in Africa
Ann SwidlEr
SuSAn cottS wA tkinS
Princeton University Press
Princeton and Oxford
Copyright © 2017 by Princeton University Press
Published by Princeton University Press,
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Jacket photograph by Gerald Cotts
All Rights Reserved
Library of Congress Cataloging-i n- Publication Data
Names: Swidler, Ann, 1944– author. | Watkins, Susan Cotts, 1938– author.
Title: A fraught embrace : the romance and reality of AIDS altruism in Africa / Ann
Swidler and Susan Cotts Watkins.
Other titles: Princeton studies in cultural sociology.
Description: Princeton : Princeton University Press, 2017. | Series: Princeton studies in
cultural sociology | Includes bibliographical references and index.
Identifiers: LCCN 2016039899 | ISBN 9780691173924 (hardcover : alk. paper)
Subjects: LCSH: AIDS (Disease)— Malawi. | AIDS (Disease)— Patients— Services for—
Malawi. | HIV infections— Social aspects— Malawi. | Non- governmental organizations—
Malawi. | Antiretroviral agents— Malawi. | Voluntarism— Malawi.
Classification: LCC RA643.86.M3 S95 2017 | DDC 362.1969792096897—d c23
LC record available at https://lccn.loc.gov/2016039899
British Library Cataloging- in- Publication Data is available
This book has been composed in Baskerville 10 Pro
Printed on acid- free paper. ∞
Printed in the United States of America
10 9 8 7 6 5 4 3 2 1
contEntS
Preface vii
chAptEr 1. Introduction: Altruism from Afar 1
chAptEr 2. Fevered Imaginations 19
chAptEr 3. Lumbering Behemoths and Fluttering Butterflies:
Altruists in the Global AIDS Enterprise 36
chAptEr 4. Cultural Production: A Riot of Color 57
chAptEr 5. Getting to Know Brokers 78
chAptEr 6. Brokers’ Careers: Merit, Miracles, and Malice 106
chAptEr 7. Themes That Make Everyone Happy:
Fighting Stigma and Helping Orphans 123
chAptEr 8. Themes That Make Everyone Anxious:
Vulnerable Women and Harmful Cultural Practices 138
chAptEr 9. A Practice That Makes Everyone Happy: Training 166
chAptEr 10. Creating Success 183
chAptEr 11. Conclusions: Doing Good Better 198
Acknowledgments 215
Notes 219
References 247
Index 269

prEFAcE
bEginning in thE lAtE 1980S, the horror of the AIDS epidemic in Af-
rica called forth an outpouring of compassion—a nd of romantic imagina-
tion. Governments in wealthy countries created global organizations to
fight the disease; church groups sent volunteers; ordinary people sent
checks. There was a ferment of altruism in the Western world inspired by
a desire to help others in far-a way places. We focus on AIDS as the key
motivator of the global altruism we study. But altruists also target other
issues, such as poverty and women’s empowerment, and embrace other
transformative goals. Consequently, our analysis of global altruism widens
beyond a focus on AIDS interventions alone.
Much good has come from this altruism. Successful efforts to provide
drugs that treat, if not cure, AIDS have extended the lives of millions who
would otherwise have died. AIDS altruism, however, also inspired power-
ful fantasies. Donors in wealthy countries, particularly those hoping to
prevent, rather than just treat AIDS, have imagined that they can protect
Africans by transforming them. Their fantasies have been reciprocated
from the African side. Quests for transformation of both self and others
constitute the essence of a romance.
The ferment of AIDS altruism has also brought new opportunities to
those whom we call “brokers”—e ducated or unusually entrepreneurial Af-
ricans who mediate between foreign altruists and local people who are try-
ing to survive the epidemic and care for those who are ill. Some brokers are
employees in the many organizations working to transform Africans’ ways
so that they can escape infection. Others are brokers-b y- chance— locals
who often through an accidental contact assist foreign visitors who have
come to help orphans or comfort the stricken.
Western altruists and African brokers enact a romance in another sense
too. As in a love story, both long for connection, albeit in different ways.
They bring to their encounters their own hopes and dreams, and they often
suffer disappointment and heartbreak. Sometimes there is an eventual con-
summation, if not a perfectly happy ending.
To function in such unfamiliar landscapes as Africa’s villages or urban
slums, both large institutions and individual altruists need local guides—
brokers who can connect them with those whom they would help. How-
ever unromantic the term “broker” may sound, the foreigner’s dependence
on the broker as guide, cultural interpreter, and sometimes friend can make
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Preface
the relationship an emotionally charged one. From their side, brokers
dream that someone who has come to fight AIDS will transform their lives.
This mutual dependence, given the hopes and fantasies it arouses on both
sides, creates a romance that often begins with a rush of infatuation but
also can dissolve into disillusionment, disappointment, and even a sense
of betrayal.
Coming from different worlds heightens both the excitement of discov-
ery and the dangers of misunderstanding. Altruists who come from afar,
however, rarely recognize the brokers’ fantasies. This book, if it succeeds,
should deepen readers’ understanding of what the romance of AIDS altru-
ism is like from the perspectives of the brokers, who are critical but often
ignored actors in the AIDS drama.
We refer to altruists and donors almost interchangeably, although some
altruists are volunteers who primarily give their time and effort, and others
are institutions that just give money. The individuals who come in person to
help and the institutional altruists—t he giant bureaucracies such as USAID
or Save the Children—a ll depend on publics that are moved to help distant
villagers. We use the term “villagers” to refer to the objects of the donor’s
affections although they may be fishermen or small traders or live in urban
slums. “Villagers” connotes to altruists and brokers poor communities in
need of their help. Although villagers draw altruists, large and small, to
Africa, most altruists have their deepest direct involvement with a broker.
Few villagers ever meet either a donor or a broker, but they too dream that
somehow, some day, they will be helped by an altruist from afar.
The intense emotions that draw altruists to Africa are displayed in West-
ern accounts. In 2003, a British newspaper, The Guardian, published “Sav-
ing Grace,” a special supplement about the devastating effects of AIDS in
Malawi, focused on Grace Matnanga, a young, HIV-p ositive (HIV+) woman.
Once she had a husband. Once she had a child. Both are dead.
“I was married for eight years,” she says. “My husband passed
away in 1998. He collapsed and was taken to the Central Hospital
and put on oxygen.” Like most of the young people who die, he had
not been tested for HIV, but there’s little doubt that Aids killed him.
He survived longer than their little daughter. Tiyajane was born
in 1993, the longed- for fulfilment of marriage in Malawian society,
where almost every young woman has a baby strapped to her back.
Tiyajane appeared to be healthy at first, but then the weight gain
slowed. She stopped thriving. She began to get sick. She picked up
infections. When she died, aged three, she was a pitiful, wasted scrap,
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Preface
the ulcers in her throat and mouth making the pain of swallowing
more vicious than the pangs of hunger.
At the time that Grace’s daughter was desperately ill, antiretroviral drug
treatment (ARVs) had been developed in the West, but was neither widely
available nor free in Malawi. The story concludes with the painful unfair-
ness of Grace’s situation:
“If ARVs were available and they were here, I would take them,” she
says. She is no more indifferent to her life than her contemporary in
an up- market shoe shop in Durham or Leeds. She’s just living on the
wrong side of the global divide.1
The story drew such a response that the newspaper created the Saving
Grace Foundation to buy antiretroviral treatment for poor Malawians. Later,
as treatment became more widely available, the foundation provided nutri-
tional foods and home based care for HIV+ Malawians, and beginning in
2007, “facilitators to work in schools and communities to raise awareness
of HIV prevention through active and participatory theatre workshops.”2
In May 2000, a member of the US Congress, Sheila Jackson- Lee, de-
scribed the gripping personal experience that inspired her to propose a
government trust fund to “combat the AIDS epidemic”:
When I traveled to Africa, I went in to visit some of the locales and
villages where HIV-i nfected persons were living in desolation, alone,
and without family support. . . .
When I visited these bedridden individuals, I saw so many of
them suffering, not only from the devastation of AIDS but they were
suffering from tuberculosis. Sometimes they were left to be cared for
by children as young as 4 and 6 years old, because other families had
already died.
One woman that I spoke to had already lost six members of her
family, was HIV-i nfected herself along with her son. The reason is be-
cause she nurtured her husband who died of this disease, and none
of the family members would explain what was occurring to him. It
is a question whether they even knew. So, of course she contracted
the disease subsequently as well.3
Such moving stories turned ordinary people in wealthy nations and their
governments into altruists of the global AIDS enterprise.
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