Disability and Culture PDF
Preview Disability and Culture
Disability and Culture Disability and Culture EDITED BY Benedicte Ingstad Susan Reynolds Whyte UNIVERSITY OF CALIFORNIA PRESS Berkeley Los Angeles London University of California Press Berkeley and Los Angeles, California University of California Press London, England Copyright © 1995 by The Regents of the University of California Library of Congress Cataloging-in-Publication Data Disability and culture / edited by Benedicte Ingstad, Susan Reynolds Whyte. p. cm. Includes bibliographical references (p. ) and index. ISBN 0-520-08360-1 (cloth). — ISBN 0-520-08362-8 (paper). 1. Handicapped—Cross-cultural studies. I. Ingstad, Benedicte. II. Whyte, Susan Reynolds. HV1568.D55 1995 305.9'0816—dc20 93-38479 CIP Printed in the United States of America 1 2 3 4 5 6 7 89 The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI Z39.48-1984 6 far Edwin and for Michael CONTENTS PREFACE / ix INTRODUCTION 1. Disability and Culture: An Overview Susan Reynolds Whyte and Benedicte Ingstad / 3 PART I • DISABILITY, COSMOLOGY, AND PERSONHOOD Introduction / 35 2. Persons and Nonpersons: Disability and Personhood among the Punan Bah of Central Borneo Ida Nicolaisen / 38 3. A Child Is a Child: Disability and Equality among the Kenya Maasai Aud Talk / 56 4. Disability as Incurable Illness: Health, Process, and Personhood in Southern Somalia Bernhard Helander / 73 5. Why Disabled? The Cultural Understanding of Physical Disability in an African Society Patrick Devlieger / 94 6. Being 111 and Being Me: Self, Body, and Time in Multiple Sclerosis Narratives Judith Monks and Ronald Frankenberg / 107 vn via CONTENTS PART II • SOCIAL CONTEXTS OF DISABILITY Introduction / 137 7. Encounters: The Body Silent in America Robert Murphy / 140 8. Sighted Lovers and Blind Husbands: Experiences of Blind Women in Uganda Nayinda Sentumbwe / 159 9. Public Discourses on Rehabilitation: From Norway to Botswana Benedicte Ingstad / 174 10. Hero, Beggar, or Sports Star: Negotiating the Identity of the Disabled Person in Nicaragua Frank Jarle Bruun / 196 11. Disability and Migration: A Case Story Lisbeth Sacks / 210 12. Constructing Epilepsy: Images and Contexts in East Africa Susan Reynolds Whyte / 226 13. Mpho ya Modimo—A Gift from God: Perspectives on "Attitudes" toward Disabled Persons Benedicte Ingstad / 246 EPILOGUE 14. Disability between Discourse and Experience Susan Reynolds Whyte / 267 CONTRIBUTORS / 293 INDEX / 295 PREFACE Impairments of the mind, the senses, and the motor functioning of the body are universal. Everywhere there are people who must live with biolog- ical defects that cannot be cured and that inhibit, to some extent, their ability to perform certain functions. But the significance of a deficit always depends on more than its biological nature; it is shaped by the human cir- cumstances in which it exists. This book is about disability in its cultural context. We examine the ways in which people in very different settings understand and react to impairment. We ask how it affects the unfolding of their lives and the pursuit of the values that are most important to them—whether they find meaning in accumulating cattle, having chil- dren, or self-development. And we discuss historical changes in concep- tions and practices related to disability. The contributors to the volume have done intensive field research in the communities about which they write. Some have experience of impairment in their own lives; some have worked with rehabilitation programs and have undertaken research agendas primarily focused on disability. Others came to the issue through an interest in health, identity, personhood, and processes of cultural construction. In general we bring to our common proj- ect a mix of practical, empirical, and theoretical concern. The history of this cooperation dates back to 1983. One of the editors, Susan, had just finished a consultancy in Tanzania for the World Health Or- ganization and the Danish International Development Agency, which in- volved a study of attitudes and practices relating to mental impairment. Benedicte stopped in Copenhagen to discuss this work on her way to Botswana, where she was to undertake a two-year study of cultural aspects of disability in general and the WHO program for community-based rehabili- tation in particular. At this first meeting we lamented the lack of literature IX PREFACE on disabled people in developing countries. Most of the scholarly work dealt with Europe and North America. While in Botswana, and on several later occasions, Benedicte met with Dr. Einar Helander, then head of the WHO Rehabilitation Department in Geneva, and "father" of the WHO Community-Based Rehabilitation (CBR) Programme. She pointed out the lack of cultural analysis and awareness in the implementation and evaluation of CBR programs. Generously, Dr. Helander took up this challenge and offered some economic support from WHO to set up a network of studies on beliefs and attitudes toward disabled people in various cultural settings. This was done by encouraging graduate students of anthropology at the University of Oslo to choose "disability and culture" as the topic of their the- ses, by affiliating one student who had already undertaken such a study on his own initiative, and by persuading colleagues who were about to start fieldwork to include the topic in their research. The network came to in- clude projects from nine countries. In 1990 we conducted a workshop at the University of Oslo, sponsored by the Norwegian Department of Foreign Af- fairs, in which these projects were presented, together with papers by invited scholars from Zimbabwe, Mali, Kenya, Sweden, and WHO in Geneva. The proceedings from this workshop were published as a working paper, and four of the contributions have been further developed for inclusion in the present volume (chaps. 3, 4, 8, and 10). Other chapters were solicited from people who had relevant material or were already working in this area. We wrote to Robert Murphy, who ex- pressed interest in our effort and a hope that he might be able to contribute something when he had finished work underway. After he died, his wife, Yolanda Murphy, kindly agreed to allow us to include a chapter from his book The Body Silent; we wanted him to be a part of this project. Our colleagues in Oslo and Copenhagen encouraged and supported us in the work that led to this volume. Susan would also like to thank Bente Jensen at the Institute of Anthropology in Copenhagen for help in prepar- ing parts of the manuscript, and the Department of Social Medicine at Har- vard University for the hospitality of a visiting associate professorship while she completed revisions. We are grateful to Gelya Frank for her advocacy and helpful suggestions when we needed them. At the University of California Press, Stan Holwitz welcomed our plan, and Michelle Bonnice and Linda Benefield treated our manuscript with kindness, thoughtfulness, and care. We envision this volume as serving three types of readers: our social sci- ence colleagues and students; people working with health or rehabilitation programs, particularly in developing countries; and people with disabilities, who may find in these pages new perspectives on their situations. We hope that this book will provoke discussion and further research, and enhance understanding of the cultural dimensions of disability.
The list of books you might like
