AIDS, Intimacy and Care in Rural Kwazulu-Natal

welfare care & Patricia C. Henderson is a lecturer in the Department of Social Anthropology at the University of Cape Town. Patricia C. Henderson AIDS, Intimacy and Care in Rural KwaZulu-Natal and Care in Rural Intimacy AIDS, From 2003-2006, Patricia Henderson lived in the South African province of KwaZulu-Natal, where she recorded the experiences of people living with HIV/AIDS. In this illuminating study, she recounts the concerns of rural AIDS, Intimacy and Care people and explores local repertoires through which illness was folded into everyday life. The book spans a period when antiretroviral medication was not available, and moves on to a time when the treatment became in Rural KwaZulu-Natal accessible. Hope gradually became manifest in the recovery of a number of people through antiretroviral therapies and ‘the return’ of bodies they could recognise as their own. This research implies that protracted interaction A Kinship of Bones with people over time, offers insights into the unfolding textures of everyday life, in particular in its focus on suffering, social and structural inequality, illness, violence, mourning, sensibility, care and intimacy. Taking the reader through landscapes of disease, devastation and hope, Henderson’s book is theoretically erudite without her philosophical observations overwriting the words of her respondents. She shows what fidelity means in the fields anthropologists cultivate. Veena Das, Krieger-Eisenhower Professor of Anthropology, Johns Hopkins University In a most personal and ethically informed narrative, Henderson develops a carnal anthropology of the decaying and dying body of HIV/AIDS patients that may trigger love and care, as well as stress and rejection. Jean-Pierre Warnier, Professor of Anthropology, Centre of African Studies, Paris Henderson’s beautiful work explores how, in the context of HIV/AIDS, the social is C. Henderson Patricia constituted through aesthetic, emotional and embodied relationships of mutuality, and the world re-made in the face of grief and loss. Fiona Ross, Associate-Professor, University of Cape Town ISBN 978 90 8964 359 9 www.aup.nl 9 789089 643599 A U P A U P AIDS, Intimacy and Care in Rural KwaZulu-Natal CARE & WELFARE Care and welfare are changing rapidly in contemporary welfare states. The Care & Welfare series publishes studies on changing relationships between citizens and professionals, on care and welfare governance, on identity politics in the context of these welfare state transformations, and on ethical topics. It will inspire international academic and political de- bate by developing and reflecting upon theories of (health) care and welfare through detailed national case studies and/or international compar- isons. This series will offer new insights into the interdisciplinary theory of care and welfare and its practices. series editors Jan Willem Duyvendak, University of Amsterdam Trudie Knijn, Utrecht University Monique Kremer, Netherlands Scientific Council for Government Policy (Wetenschappelijke Raad voor het Regeringsbeleid – WRR) Margo Trappenburg, Utrecht University, Erasmus University Rotterdam previously published Jan Willem Duyvendak, Trudie Knijn and Monique Kremer (eds.): Policy, People, and the New Professional. De-professionalisation and Re-professionalisation in Care and Welfare, 2006 ISBN 978 90 5356 885 9 Ine Van Hoyweghen: Risks in the Making. Travels in Life Insurance and Genetics, 2007 ISBN 978 90 5356 927 6 Anne-Mei The: In Death’s Waiting Room. Living and Dying with Dementia in a Multicultural Society, 2008 ISBN 978 90 5356 077 8 Barbara Da Roit: Strategies of Care. Changing Elderly Care in Italy and the Netherlands, 2010 ISBN 978 90 8964 224 0 Janet Newman and Evelien Tonkens (eds.): Participation, Responsibility and Choice. Summoning the Active Citizen in Western European Welfare States, 2011 ISBN 978 90 8964 275 2 AIDS, Intimacy and Care in Rural KwaZulu-Natal A Kinship of Bones Patricia C. Henderson Cover photo: Odette Herbert Cover design: Sabine Mannel, NEON graphic design company, Amster- dam Lay-out: JAPES, Amsterdam ISBN 978 90 8964 359 9 e-ISBN 978 90 4851 497 7 NUR 759 © Patricia C. Henderson / Amsterdam University Press, Amsterdam 2011 All rights reserved. Without limiting the rights under copyright reserved above, no part of this book may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise) without the written permission of both the copyright owner and the author of the book. For the late Pippa Stein and my parents Contents Acknowledgements 9 Preface 13 Introduction 17 1. The Vertiginous Body and Social Metamorphosis 41 The life and death of Nkosinathi Dladla 44 Symbolic investments in the body 51 Conclusion 56 2. Mortality and the Ethics of Ethnographic Research 59 In the presence of death 59 Theoretical pathways 64 Accompanying Mandla Shabalala in his illness 70 Conclusion 80 3. Children and Youth in Pursuit of Care 83 Introduction 83 The variable living circumstances of the children and youth of Amatikwe 87 The pain of mobility 95 Expressive genres 99 Conclusion 102 4. Healers Negotiating the Local and the Global 105 Exploring healer narratives: Ntuthuko Hadebe 108 Nonhlanhla Duma 113 Ties between the living and the dead, a conduit of knowledge 116 The politics of illness 119 Conclusion 125 5. Love in a Time of Adversity 127 Part one 129 Part two 144 Conclusion 150 6. On Accompanying the Ill 153 Zinhle Vilikazi 157 Life experience and philosophy in relation to becoming a volunteer 162 Home-based carers as brokers 167 7 The illegal sale of medication from a public health facility 170 Beginning a journey with antiretroviral therapies 172 Conclusion 176 Epilogue 181 Appendix: Interlocutors and Research Methods 187 Acronyms 193 Glossary 195 Notes 201 Bibliography 225 Index 243 8 aids, intimacy and care in rural kwazulu-natal Acknowledgements Having completed a doctorate in social anthropology and a post-doctoral fellowship at an American university, I returned to South Africa in 2002 hoping to find work in the field of HIV and AIDS. With its overwhelm- ing presence in southern Africa, the disease seemed to present one of the greatest challenges facing the newly formed South African demo- cratic state. Its effects added an especially cruel burden to the multiple social and economic problems South Africa would have to confront. Through a series of serendipitous events, and in ways that suited my love of detailed anthropological and ethnographic research, I would in- deed begin to work with people living with and alongside HIV and AIDS. The years 2003 to 2007 marked a long and painful, yet rewarding journey in which I came to record individuals’ experiences of living in the context of HIV and AIDS in Okhahlamba, a sub-district of KwaZulu- Natal in the region of the northern Drakensberg. The period began with three years of intensive ethnographic fieldwork, followed by two years of writing an ethnography. My profound gratitude and respect are due throughout to Eleanor Preston-Whyte, the head of the Social Science Re- search Unit at the Centre for HIV and AIDS Networking (HIVAN) at the University of KwaZulu-Natal, who graciously oversaw the work, giving me freedom to devise plans for fieldwork and to explore, think and write as I chose. At the commencement of the project, Sean Jones not only recommended that I be approached to do the work, but wrote and sub- mitted successful funding applications to the National Institutes of Health (NIH) and to the Rockefeller Brothers Fund, without which the research and the book would not have been possible. My heartfelt thanks are therefore also due to these funding bodies. With regard to time spent in Okhahlamba, I cannot thank enough the many people whom I met, some of whose ‘stories’ concerning illness and care appear in particular chapters in the book. Each person whom I came to know has enriched my life in enduring ways. Through our ex- changes in a time of AIDS, even in the midst of death and great sorrow, there was often a sense of beauty and human generosity: qualities that were interwoven with local cultural practice and ways-of-being. I do not mention the names of my friends in Okhahlamba in order to protect their identities. Yet I wish them to know that if I could, I would proclaim their names loudly. During my stay in Okhahlamba, several people I knew died of lesisifo (this illness, the local term most frequently used to refer to AIDS). What I have written is dedicated to their memory. 9 The body of research I came to complete encompassed my relationships with home-based carers who had received some training in pallia- tive care and who looked after the ill in their homesteads; with individuals suffering from HIV and AIDS and their families; a number of diviners and herbalists; and a group of young people from one settle- ment who had lost one or both parents through death. Without their acceptance and friendship, the work would not have been possible. In particular, I would like to thank the home-based carers whom I visited in their homes and whom I accompanied on visits to some of their patients. My gratitude and respect are due to the few people who allowed me to accompany them in their journeys with the illness. I thank the healers whom I met for their wide-ranging philosophical dis- cussions. The 31 ‘Leaders of Tomorrow (LOT)’–young people whom I visited in their homes and at school in the community in which they lived – never failed to uplift me with their youthful exuberance. I thank them for their creativity, laughter, and performance, and for their playful description of anthropology as the exchange of unbounded ‘stories about nothing’. I recall with happiness their accompanying me in walking the mountains to and from their homes.

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