Morality, Hope and Grief: Anthropologies of AIDS in Africa (Epistemologies of Healing)

Morality, Hope and Grief

Series: Epistemologies of Healing General Editors: David Parkin and Elisabeth Hsu: both are at ISCA, Oxford This series in medical anthropology will publish monographs and collected essays on indigenous (so-called traditional) medical knowledge and practice, alternative and complementary medicine, and ethnobiological studies that relate to health and illness. The emphasis of the series is on the way indigenous epistemologies inform healing, against a background of comparison with other practices, and in recognition of the fluidity between them. Volume 1 Conjuring Hope: Magic and Healing in Contemporary Russia Galina Lindquist Volume 2 Precious Pills: Medicine and Social Change among Tibetan Refugees in India Audrey Prost Volume 3 Working with Spirit: Experiencing Izangoma Healing in Contemporary South Africa Jo Thobeka Wreford Volume 4 Dances with Spiders: Crisis, Celebrity and Celebration in Southern Italy Karen Lüdtke Volume 5 ‘The Land Is Dying’: Contingency, Creativity and Conflict in Western Kenya P. Wenzel Geissler and Ruth J. Prince Volume 6 Plants, Health and Healing: On the Interface of Ethnobotany and Medical Anthropology Edited by Elisabeth Hsu and Stephen Harris Volume 7 Morality, Hope and Grief: Anthropologies of AIDS in Africa Edited by Hansjörg Dilger and Ute Luig Volume 8 Folk Healing and Health Care Practices in Britain and Ireland: Stethoscopes, Wands or Crystals Edited by Ronnie Moore and Stuart McClean

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Morality, Hope and Grief Anthropologies of AIDS in Africa Edited by Hansjörg Dilger and Ute Luig

Berghahn Books New York • Oxford

First published in 2010 by Berghahn Books www.berghahnbooks.com ©2010 Hansjörg Dilger and Ute Luig

All rights reserved. Except for the quotation of short passages for the purposes of criticism and review, no part of this book may be reproduced in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage and retrieval system now known or to be invented, without written permission of the publisher.

Library of Congress Cataloging-in-Publication Data Morality, hope and grief : anthropologies of aids in Africa / edited by Hansjørg Dilger and Ute Luig. p. cm. -- (Epistemologies of healing) Includes bibliographical references and index. ISBN 978-1-84545-663-4 (hardback : alk. paper) 1. AIDS (Disease)--Social aspects--Africa. 2. Medical anthropology-Africa. I. Dilger, Hansjörg. II. Luig, Ute. RA643.86.A35M675 2010 362.196’97920096--dc22 2010006676

British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library

Printed in the United States on acid-free paper. ISBN: 978-1-84545-663-4 Hardback

DContents

List of Illustrations

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Acknowledgements

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Introduction. Morality, Hope and Grief: Towards an Ethnographic Perspective in HIV/AIDS Research Hansjörg Dilger

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I. Giving Hope? Networks of Healing, Treatment and Care 1. Beyond Bare Life: AIDS, (Bio)Politics, and the Neoliberal Order Jean Comaroff 2. Spiritual Insecurity and AIDS in South Africa Adam Ashforth 3. New Hopes and New Dilemmas: Disclosure and Recognition in the Time of Antiretroviral Treatment Hanne O. Mogensen 4. Health Workers Entangled: Confidentiality and Certification Susan R. Whyte, Michael A. Whyte, David Kyaddondo 5. ‘My Relatives Are Running Away from Me!’ Kinship and Care in the Wake of Structural Adjustment, Privatisation and HIV/AIDS in Tanzania Hansjörg Dilger

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21 43

61

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DContents II. Moralities at Stake 6. The Social History of an Epidemic: HIV/AIDS in Gwembe Valley, Zambia, 1982–2004 Elizabeth Colson

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7. Living beyond AIDS in Maasailand: Discourses of Contagion and Cultural Identity Aud Talle

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8. Politics of Blame: Clashing Moralities and the AIDS Epidemic in Nso’ (North-West Province, Cameroon) Ivo Quaranta

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9. Gossip, Rumour and Scandal: The Circulation of AIDS Narratives in a Climate of Silence and Secrecy Graeme Reid

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III. Experiences of Grief, Death and Pain 10. ‘We Are Tired of Mourning!’ The Economy of Death and Bereavement in a Time of AIDS Liv Haram

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11. Purity Is Danger: Ambiguities of Touch around Sickness and Death in Western Kenya P. Wenzel Geissler and Ruth J. Prince

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12. Diseased and Dangerous: Images of Widows’ Bodies in the Context of the HIV Epidemic in Northern Zambia Johanna A. Offe

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13. Orphans’ Ties – Belonging and Relatedness in Child-Headed Households in Malawi Angelika Wolf

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14. The Widow in Blue: Blood and the Morality of Remembering in Botswana’s Time of AIDS Frederick Klaits

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Notes on Contributors

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Index

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DIllustrations

Figure 1.1: Protesters wear masks in Pretoria against drug firms. Source: Reuters, 18 April 2001.

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Figure 5.1: Illustration in a booklet, instructions for ‘good’ and ‘safe’ care for people with HIV/AIDS. Source: Femina HIP Multimedia Initiative, Tanzania.

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Figure 9.1: The SA Institute for Medical Research is investigating the possibility that AIDS is transmitted by insects or other animals. . . . How did you get AIDS? A poof-adder bit me. . . . Hey, what do you want to test here with that arse-o-meter! Source: Rapport, 25 August 1985.

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DAcknowledgements

This book assembles a collection of papers that were first presented at a symposium on AIDS and the Moral Order at Wulkow Castle near Berlin. On the occasion of this symposium, anthropologists and other social scientists discussed the social, moral and politicaleconomic configurations that have shaped the course of the HIV/ AIDS epidemic in sub-Saharan Africa and individual and collective experiences and actions in relation to the disease. Subsequent to the symposium, the papers were significantly revised in order to create a thematically coherent volume. We would like to express our sincere gratitude to the contributors to this book who have taken up the challenge to revise their conference presentations based on an internal and external review process. We also thank the following panel discussants and chairs who made invaluable comments on the presentations at the symposium and whose comments formed a rich basis for broadening our own and our contributors’ perspectives on HIV/AIDS: Paula Treichler, Peter Geschiere, Jamie Monson, Christine Obbo, Benedicte Ingstad, Stacy L. Pigg and Suzette Heald. Finally, we want to thank two anonymous reviewers for constructive comments on the final versions of the chapters. We thank Duke University Press and Edinburgh University Press for granting permission to reprint shortened and slightly revised versions of the following texts: Jean Comaroff, ‘Beyond Bare Life: AIDS, (Bio)Politics, and the Neoliberal Order’ (first published in Public Culture 19(1) 2007: 197–219); Frederick Klaits, ‘The Widow in Blue: Blood and the Morality of Remembering in Botswana’s Time of Aids’ (first published in Africa 75(1) 2005: 46–62). The article by Elizabeth Colson, ‘The Social History of an Epidemic: HIV/AIDS in Gwembe Valley, 1980–2004’, was first published in Philippe Denis and Charles Becker (eds), The HIV/AIDS Epidemic in Sub-Saharan ix

DAcknowledgements Africa in an Historical Perspective (online publication, 2006). Last but not least, we would like to thank the Volkswagen Foundation for generously funding and supporting the symposium in Berlin. Furthermore, financial support for the preparation of the index was provided by the Department of Political and Social Science, Freie Universität Berlin. A welcome address to the symposium was sent by the then minister for cooperation and economic development, Heidemarie Wieczorek-Zeul. One note on the use of ‘HIV’, ‘AIDS’ or ‘HIV/AIDS’ in this book: These acronyms are often used interchangeably by the authors, less as referents to a biological entity but rather as social and political categories related to perception, experience and practice. Hansjörg Dilger and Ute Luig, February 2009

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DIntroduction Morality, Hope and Grief: Towards an Ethnographic Perspective in HIV/AIDS Research Hansjörg Dilger

AIDS as an Object of Anthropological Inquiry Over the last couple of years, anthropological studies on HIV/AIDS in sub-Saharan Africa have taken an increasingly broad focus. While anthropological and social science publications during the first years of the epidemic tended to assume an applied and rather narrow approach to the disease by concentrating on risk behaviours, risk groups and prevention – increasingly also on care and support systems later – more recent research has focused on the way HIV/AIDS as a social reality has become embedded in specific social and cultural contexts and how these contexts in turn are being modified, transformed and challenged by the presence of the disease. Thus, from an anthropological perspective, a ‘thick description’ of HIV/AIDS implies not only the examination of the political, economic and social forces that have prepared the ground for the spread of the epidemic in a given regional and historical setting (Farmer 1999; Schoepf 2001). It also involves the cultural, moral and political responses that various actors in a society have developed in relation to the disease and that give the epidemic its particular shape and meaning in a specific location and context (see also Heald 2003; Setel 1999). 1

DHansjörg Dilger A ‘broad’ approach to the study of HIV/AIDS raises immediate questions. If, for instance, we assume that HIV/AIDS has to be studied in relation to larger social, cultural and political-economic configurations, why then is it often discussed as a separate phenomenon and what is so exceptional about the disease? This question has no clear-cut answer. On the one hand, the chapters in this book emphasise that the study of AIDS is about the experiences and actions of individuals, families and communities that are struggling with the social, cultural and political transformations that have shaped their everyday lives in the context of globalisation processes and modernity. Thus, the anthropological study of AIDS is about the more general challenges of caring for and supporting the sick and the needy, the responsibilities of burying and remembering the dead, and the moral questions concerning social coherence and continuity in a society undergoing rapid political and economic transformations. On the other hand, however, many of the chapters make it clear that there is something specific about HIV/AIDS that justifies the numerous studies that have evolved from the topic over the last two to three decades. The specific focus on the epidemic is due not only to the fact that international and national responses to HIV/AIDS have ascribed an ‘exceptionalism status’ to the disease for a long time: exceptional in relation to the high morbidity and mortality rates caused by the epidemic; the disproportionate funding allocated to the fight against HIV/AIDS (either ‘not enough’ or ‘too much’ compared with other diseases); and the social, economic and political impact that the disease has had on societies and communities in sub-Saharan Africa, which has led to the labeling of HIV/AIDS as a ‘development problem’ (World Bank/Africa Region 2000; Fredland 1998) and even as a ‘security crisis’ (Ostergaard 2002; Schönteich 1999). This sense of exceptionalism is also reflected by the social realities and experiences that are associated with the HIV/AIDS epidemic in many African countries – with regard to the multiple prevention, care and treatment programs that have been established in wide parts of sub-Saharan Africa and also with regard to the strong societal stigma attached to the disease since it emerged as a social and cultural reality more than twenty-five years ago. However, there is yet another aspect of HIV/AIDS that makes it a distinct experience in the life worlds of populations in the wider sub-Saharan African region: the suffering and dying of young to 2

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middle-aged men and women – as well as the children that survive them – who are most affected by the epidemic and who are at the centre of the social and moral orders of their families, communities and the larger state formations they inhabit. What makes AIDS so exceptional from this perspective is that the disease has the power to challenge the ‘habitual’ of everyday life and that it has become a disruptive and morally disturbing force in the productive and reproductive orders of kinship networks, community constellations and society at large (see Schoepf 2001: 336). This book is a contribution to the larger corpus of AIDS studies that have increasingly emphasised the need to explore the social, cultural and political-economic dynamics that have been associated with the HIV/AIDS epidemic in sub-Saharan Africa over the last three decades and that have become the subject of moral tensions and struggles for a broad range of social units and actors in the region. In this regard, the book may be interesting for development workers who wish to learn more about the social and cultural contexts in which the communities and families – who have become the targets of transnationally funded interventions as well as ‘grassroots’ and ‘community-based’ programs1 – experience and deal with the epidemic in their everyday life. On another level, however, this volume wants to open the study of AIDS for ‘general anthropologists’ and Africanists who are confronted with the consequences of the epidemic in their various research projects, but who have not taken up the challenge of integrating this issue in their analysis of the social, cultural and political-economic configurations in contemporary Africa. By this, we as editors of this book do not mean that all anthropologists or Africanists should address the topic of AIDS in their research and writing. However, in a similar vein, as globalisation and/or modernity have become common (though not uncontested) topics in studies on societies and groups in contemporary Africa during the last fifteen to twenty years, we feel that more scholars should become aware of the ways in which the presence of the disease has affected local and household economies; gender and kinship relations; religious expression and organisation; conceptions of life, death and healing; and the organisation of social, cultural and political life in sub-Saharan Africa in general. In this regard, this volume wants to make a contribution to the ‘normalisation’ of the study of AIDS 3

DHansjörg Dilger in anthropology and the wider humanities and thus contribute to reducing the sense of exceptionalism that has surrounded the epidemic in academic circles for many years (Heald 2003; Herdt 1987). In the following introduction, three aspects will be addressed that have become characteristic of the broader anthropological study of AIDS in Africa and that are also reflected in the chapters of this volume.2

Bridging the Local and the Global in AIDS Research For almost two decades now, anthropologists have argued that the objects of ethnographic and anthropological inquiry can no longer be defined in relation to fixed localities and/or neatly defined social groups: globalisation processes, transnational power relations, migratory networks and the political economies of the emerging ‘neoliberal world order’ have had an impact on the way social relations and cultural politics are experienced and configured in populations worldwide (Gupta and Ferguson 1992; Ferguson 2006; Comaroff and Comaroff 1993, 2000). In the context of HIV/AIDS, several authors have argued that the spread of the epidemic – as well as the way people have reacted to it – are intimately intertwined with political-economic processes and the dynamics of globalisation. Brooke Schoepf (1992, 2001) and Paul Farmer et al. (1993) have argued that the course of the HIV/AIDS epidemic in ‘developing nations’ – but also among socially disadvantaged groups in industrial nations – is determined by globally, nationally and locally produced structural forces such as class, ethnicity or gender. Paul Farmer has further grouped these analyses under the concept ‘structural violence’ and pointed out that entire groups and societies are exposed to increased risk of illness and suffering in the context of globally driven poverty, transnational power structures and a lack of access to health services and education (Farmer 1996, 1999). The presence of international forces in relation to the epidemic has been most explicit in the context of HIV/AIDS in Africa, which according to Barnett and Whiteside (2002), has to be contextualised in the wider history of the continent (see also Iliffe 2006). Thus, according to these authors, the history of Africa has been shaped not 4

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only by the destructive consequences of the slave trade, the systems of power and economic dependency that were established in the colonial era, or finally the wars of independence, military coups and Cold War interests that have affected living situations on the continent in the postcolonial era. More recently, societal, political and economic orders in Africa were also reconfigured by the structural adjustment programs launched by the International Monetary Fund and the World Bank that intensified the pressure on local gender and power relations and that created a ‘risk environment’ in which violence, sexual exploitation and now the HIV/AIDS epidemic have all been able to thrive (Barnett and Whiteside 2002: 124–56). Some of the chapters in this book also emphasise the way in which the course of the HIV/AIDS epidemic in Africa has been entrenched in processes of globalisation and the power relations that have come to characterise the place of the African continent in an increasingly disparate world order. Jean Comaroff (in this volume) argues that the HIV/AIDS epidemic, coming ‘at the time of a radical restructuring of the axes of a bi-polar world, of the liberal-democratic nationstate and the workings of capitalism itself, … served as both a sign and a vector of a global order-in-formation – and with it, a new sense of the possibilities of the political’. By drawing on Agamben’s theory of the Homo Sacer (1998), Comaroff points out that the HIV/AIDS epidemic – and the way international governments and agencies have failed to react to it for many years – made clear how strongly Africa has come to epitomise another otherness in the contemporary world order, ‘less an axis of evil than of irrelevance’. In this context, people with HIV/AIDS in Africa can be seen as an embodiment of the homines sacri which are at once sacred and dispensable. That Agamben’s exclusive focus on the homo sacer – and the way human rights are enacted in a global world order in which the right to live is granted to some but not to others – may provide only a truncated perspective of globalisation processes in Africa and elsewhere, has been argued by Aihwa Ong. In Neoliberalism as Exception (2006: 14f.), she points out that Agamben’s exclusive focus on human rights tends to preclude ‘other visions of the good life [which] also provide normative guides and ethical claims for the performance of virtue within a given domain of living’; norms and claims, that is, that are promoted amongst others through the work of NGOs and community groups worldwide. In a similar vein, Comaroff (in this volume) 5

DHansjörg Dilger argues that the multiple responses that nongovernmental organisations and community-based groups in sub-Saharan Africa have established in relation to the HIV/AIDS epidemic are reflective of the struggles that people on the continent have developed in their efforts to respond actively to the disease and to transcend the destiny of the ‘passive AIDS victim’. As she puts it, ‘[t]he insistence on “positive” life – life imbued with ordinary, future-oriented expectations – is palpable in the forms of mobilisation that press for recognition of the disease. So too is the rejection of “bare death”’ (for a related argument, see Fassin 2007). Some chapters in this book show that the analysis of the HIV/AIDS epidemic in sub-Saharan Africa has to take account of the wider political-economic forces that have shaped the course of the epidemic in the context of globalisation over the last few decades. At the same time, however, this volume demonstrates that while it is necessary to lay open how global inequalities have affected the course of the HIV/AIDS epidemic in Africa, it is equally important to focus on the ‘local moral worlds’ (Kleinman 1995) that determine the ways communities, families and individuals have responded to HIV/AIDS and that transcend and intersect the complex power structures that have been established by national and international actors over the last decades. They argue that we need to know more about the multiple struggles and responses of individuals, families and communities in relation to HIV/AIDS in order to grasp the way the disease is configured as a moral and cultural category and the way these processes produce and affect social, political and economic relationships on the micro- as well as the macro-level.

Adopting an Ethnographic Perspective in the Study of AIDS It has become commonplace in anthropology today to agree that ‘culture’ can no longer be understood as a system of beliefs that is held by all members of a group or society to the same extent or that inevitably guides these group members’ decisions and actions in their everyday lives and in relation to fields as diverse as religion, kinship or the management of affliction and misfortune. In contrast to earlier approaches that ascribed a ‘distinct culture’ to neatly defined ethnic groups, contemporary anthropologists argue that culture should be 6

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seen as only one possible system of reference through which people engage in historical processes and through which they make choices and decisions in relation to other systems of reference and identification (such as religion or science) that provide knowledge about the way human beings are situated in society and the world order at large (Abu-Lughod 1991; Gupta and Ferguson 1992). Ethnography, with its holistic focus and its long-term approach for fieldwork, may play an important role in dismantling the various perspectives, practices and power relations that have come to shape the views, actions and experiences of a broad range of actors in global, national and local settings with regard to HIV/AIDS. A central argument of this book is that individual and collective experiences and actions in the context of HIV/AIDS are best described through the presentation of extended ethnographic case studies and the ‘thick description’ of a specific locality. As Mark Nichter has argued (2002), the management of illness involves more than the management of the physical disease through the definition of symptoms and/or the choosing of a certain therapy. Illness management is about the social relations that are negotiated in the context of a given illness and that shape the meanings, experiences and actions surrounding a specific illness. It is, furthermore, about the politicaleconomic conditions that determine the presence and distribution of a disease in a given locality, as well as the priorities and entitlement to resources people can claim in a community, household or family concerning the treatment of a disease.3 In a similar vein, the chapters in this volume emphasise that an ‘ethnography of the particular’ (see Abu-Lughod 1991) in the context of HIV/AIDS should pay close attention to the use of language and metaphors that have come to structure the social reality of HIV/AIDS in various African countries (Mogensen, Ashforth, Reid), the conflicts and tensions that have shaped people’s actions and struggles for meaning and healing in the context of severe illness and death (Colson, Whyte et al., Dilger, Geissler and Prince) and the multiple efforts people undertake in negotiating belonging and the moral standing of individual community members following the deaths of a partner, relative or other community members (Offe, Haram, Wolf, Klaits). However, while it can be argued that participant observation and the recording of extended case studies – often over many years, sometimes even over generations (Colson) – may establish a privileged 7

DHansjörg Dilger viewpoint for the study of AIDS, the ethnographic approach also bears problems. First, an ethnographic approach to the study of HIV/ AIDS – with its appeal to ‘pause and look at the struggles’ that have shaped the social reality of the epidemic in different settings and communities (Mogensen) – raises concerns about the ethical nature of long-term fieldwork: How ethical is it to engage in long-term research and academic debates when people are dying? While recent publications have discussed issues such as confidentiality, informed consent and also the aspect of mutuality in ‘community-based AIDS research’ (Baylies 2004), there is no rigid framework or blueprint that guides the anthropological study of HIV/AIDS for all researchers in the same way. Ultimately, it is upon the individual researchers themselves to find an acceptable way of dealing with the ethical dilemmas of doing research on a topic that is shaped so strongly by the continued presence of illness and death, either by collaborating with help organisations and agencies or by ‘simply’ accepting to be a ‘witness’ to the suffering in the communities one works with (see Farmer 1992a). Second, as Paul Farmer (1996: 263) and Brooke Schoepf (2001) have argued, there is a danger of overemphasising the agency of individual actors by focusing too narrowly on the choices and negotiations that guide men’s and women’s actions in the context of HIV/AIDS. As Schoepf (347) has put it with regard to the situation of poor women: [I]t is easy to exaggerate the agency of very poor women. … The late twentieth century saw widespread use of mass rape as a weapon of war. … That these are conditions of life and death for many millions must not be overlooked when arguing for attention to agency, negotiation, and choice. … In the time of AIDS, many poor peoples’ survival strategies have resulted in their destruction.

The contributors to this book do not want to question the existence of structural constraints and inequalities in the context of AIDS; nor do they negate the fact that individual and collective biographies and experiences are always embedded in ‘large-scale processes such as labour migration, urbanization, industrialization, Christianization, and Western education that have disrupted and transformed local social structures and knowledge systems’ in Africa during the last 100 to 150 years (Ashforth; see also Setel 1999). At the same 8

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time, however, the authors in this volume emphasise the necessity of achieving a thorough understanding of the ways in which women, men and children in sub-Saharan Africa are struggling to come to grips with the existing structural constraints and how they negotiate relationships, meaning, hope and grief in the face of suffering and death.

A Battle of Ideas: Illness, Body, and Societal Transformation A view of culture and society that highlights the way in which people draw on multiple – and often contradictory – systems of knowledge and value in managing their everyday lives has implications for the anthropological study of AIDS. What distinguishes the HIV/AIDS pandemic from other historical and contemporary diseases is the extraordinary variety of responses that the disease has produced in societies worldwide – on all levels of societal and political organisation (Iliffe 2006). As Shula Marks has suggested with reference to the medical historian Charles Rosenberg, ‘[l]ocal and national authorities, governments and NGOs, national and international agencies, political parties, patients and their advocates and above all the pharmaceutical industry have all had their own and often contradicting perceptions and agendas in addressing the challenges [the epidemic] has posed’ (2002: 14). Thus, whilst a multi-level response to HIV/AIDS has often been called for in order to bring about a turn in the course of the epidemic (most explicitly in the case of international governments and African states that were criticised for not responding to the epidemic for too long), the involvement of different groups and sectors of society has led to often heated moral debates. As Justice Edwin Cameron has put it at the conference on AIDS in Context in South Africa in 2001, HIV/AIDS has ‘from the onset involved as much a battle of ideas as a battle about bodies and organisms and cells’ (Cameron 2001: 3). The morally contested relationships between suffering, individual bodies and the larger society – and the way these relationships are perceived and discussed from a ‘local’ point of view – have long been the focus of anthropological discussion. According to authors like Victor Turner (1967), John Janzen (1978), and Susan Whyte (1997), illness and affliction in southeastern Africa have often been under9

DHansjörg Dilger stood as a reflection of disturbances in social relationships and in the course of reproductive orders. Consequently, the healing of affliction and disease has aimed at the analysis and the restoration of often idealised social and moral relationships and community constellations. This volume shows that Turner’s call to understand how explanations for illness and healing among the Ndembu in Zambia – and the way people are dealing with the challenges of life-threatening events – are ‘socially posited’ (1967: 360) is also highly relevant for the analysis of HIV/AIDS. Thus, whilst public health messages about the ‘natural causes’ (1967: 360) of HIV/AIDS are widely acknowledged in eastern and southern Africa, individual and collective views of the epidemic, as well as the practices and experiences surrounding episodes of HIV/AIDS-related illnesses and deaths in families and communities, are shaped by socio-moral perceptions and practices that relate people’s way of dealing with the disease to broader questions of social and cultural continuity and belonging; and to people’s ongoing struggle for order and certainty in an era of crisis and suffering (see Farmer 1992b; Whyte 1997; Dilger 2005; Rödlach 2006). The contributions in this volume show that local discourses on HIV/AIDS in sub-Saharan Africa have come to identify the ‘moral fault-lines’ of groups and societies and that the disease is often seen, from an emic perspective, as a marker of disorder and chaos which has to be acted upon in order to arrive at social and moral coherence. As the chapters by Colson, Talle and Quaranta demonstrate, the HIV/AIDS epidemic has become a trigger not only for moral debates on cultural identity and moral transgression that are perceived to be reflective of the larger historical transformations affecting social and generational relations in the context of modernity and globalisation. It is also shown that it is mostly specific subgroups of the population – often women and, in the case studies of Offe and Klaits, widows – who are seen as indicators of these moral ruptures. Thus, while HIV/AIDS is seen in many African countries as a general signifier of deviance and the transgression of social boundaries, extended widowhood in the context of AIDS raises anxieties and concerns about the promiscuity of women and – connected to this – concerns about the improper mixing of blood as reflected in references to diseases like kahungo, boswagadi or chira (see also the chapters by Dilger, Geissler and Prince).4 10

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While it can thus be argued that local discourses on HIV/AIDS have become the basis for blame and often also the exclusion of sick family and community members, the epidemic has also opened opportunities for social transformation and new ways of living for those affected by the disease. It could be argued that at no time in the history of the African continent has there been such a visible and also vibrant civil society that has become directly implicated in the emergence of a globally connected world order and that has opened a debate on human rights and social justice in the context of globalisation processes (Iliffe 2006). The neoliberal reform processes – and the multiple economic, social and political transformations they involve – have led not only to an increase in social inequalities and new ways of suffering. They have also made possible the creation of new social spaces and networks that devise strategies for positive and future-oriented life with the deadly and stigmatised disease; and that in some regional settings have come to articulate the demands of a transnationalised form of citizenship that makes claims on the global economic and social order based on a ‘shared therapeutic predicament’ (Nguyen 2005; see also Robins 2004). In this regard, internationally funded programs of care, prevention and treatment have paved the way for emerging forms of citizenship, ethical commitment and the forging of new subjectivities in the context of globalisation and humanitarian interventions. However, the chapters in this book show that the strong focus on life-worlds that are promoted and represented by nongovernmental organisations and humanitarian interventions represents only a partial view of the complex social and cultural processes that have come to shape the social reality of HIV/AIDS in sub-Saharan Africa. The chapter by Whyte, Whyte and Kyaddondo demonstrates that the translation of ethical guidelines into the professional relationships of an ARV treatment program in eastern Uganda has to be negotiated in relation to the moral commitments and obligations which the ‘entangled’ health workers experience toward patients and clients who are often part of the same community as they themselves. Similarly, other chapters in this book argue that the ideas and actions of individuals, families and communities in the context of HIV/AIDS are directed not exclusively at the prevention of the disease or the management of physical illness and death but have become deeply intertwined with the more encompassing strategies of women, men 11

DHansjörg Dilger and children to affirm or renegotiate relationships of solidarity and belonging (Colson, Mogensen, Dilger, Wolf), to mark ownership of the land where people live and are buried (Haram), and to (re)establish relationships with the dead as well as with the living in the context of suffering and death (Klaits, Offe). Taken together the chapters prove that public health and policy categories like ‘patient’, ‘caregiver’, ‘disclosure’ or ‘orphan’ (and the programs and bureaucracies that are being established in relation to these categories) often provide an insufficient basis for capturing the social reality of those who are targeted by public health interventions and the moral and political-economic struggles that people are facing and managing in the process of negotiating new social, cultural and professional roles in the wake of the HIV/AIDS epidemic.

Structure of the Book The chapters in this book are grouped around three thematic complexes that have been under-researched in previous studies on AIDS in Africa. Networks of Healing, Treatment and Care demonstrates how local and international practices regarding illness and treatment, along with the introduction of antiretroviral medications, convey not only ‘hope for a cure’ but have also become the trigger for moral and ethical conflicts in relation to illness, death and relationships of care. Moralities at Stake examines how social and cultural developments in various African countries are (re)interpreted in the context of HIV/AIDS and how the ‘epidemic of signification’ (Treichler 1999) is revealed through processes of blaming, as well as by establishing moral connections between the spread of HIV/AIDS and larger social transformations on the community level. Finally, Experiences of Grief, Death and Pain explores how AIDS has enforced local dichotomies of ‘healthy’ and ‘diseased’ bodies, and how the increased death toll in communities has affected individual and collective forms of burial and mourning. The book starts with the contribution of Jean Comaroff who emphasises how strongly HIV/AIDS has redrawn the Western moral geography of a neoliberal world order, with its emergence of ‘new configurations of integration and exclusion, prosperity and immiseration’. At the same time, however, she emphasises that HIV/AIDS is also triggering new kinds of sociality and politico- and bio-sub12

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jectivity, as well as the will and need among people living with the disease to assert visibility, kinship and attachment in the context of everyday survival. Adam Ashforth’s chapter goes on to explore how processes of denial, stigmatisation and behaviour change in the context of HIV/AIDS and antiretroviral treatment in South Africa are affected by people’s urge to establish spiritual security in the context of suffering and death and to give meaning to the often technical and bureaucratic language of internationally funded treatment programs. Hanne Mogensen’s chapter focuses on the issue of disclosure in Uganda in the context of antiretroviral treatment and analyses how the decision to speak to third parties about one’s HIV infection is embedded in various levels of sociality and moral commitment. Susan Reynolds Whyte, Michael A. Whyte and David Kyaddondo describe the moral and ethical dilemmas that health workers in Uganda are experiencing in relation to ARV treatment and the ways in which these health professionals are mediating between the various categories within a wider ‘medico-moral field’ (clinics, NGOs, clients, patients, families). Finally, Hansjörg Dilger discusses the ways in which acts of care and support in northwest Tanzania are embedded in neoliberal reform processes in the country, as well as in family biographies and kinship conflicts in the context of ruralurban migration. The section Moralities at Stake starts with the contribution by Elizabeth Colson, who situates her analysis of AIDS in Zambia in the context of her long-term fieldwork in the Gwembe Valley: she shows how the disease has become part of a long-standing history of outward migration, poverty and the local struggles for solidarity and moral integrity. Aud Talle goes on to describe how processes of ‘cultural othering’ have shaped the moral and cultural geographies of HIV/AIDS among the Massai in Tanzania, while Ivo Quaranta shows how, in the context of HIV/AIDS in Cameroon, processes of blaming and anti-blaming are being associated with wider societal conflicts that form the hierarchically structured relations between neo-traditional elites, elders and the young generation. Finally, Graeme Reid draws attention to the fact that in South Africa perceptions of HIV/AIDS have been subject to processes of ‘heterosexualisation’ that have excluded the topic of homosexuality from public discourse for many years. Until recently, communication on the disease within the gay community has taken place predominantly via rumours. 13

DHansjörg Dilger The connection between grief, social suffering and shifting forms of sociality is explored in the last section of the book. Liv Haram’s case study demonstrates that among the Meru in Tanzania mourning and grief in the context of AIDS are associated with multiple moral dilemmas evolving from the negotiation of temporal and financial resources, as well as local understandings of proper mourning. These gender-specific dilemmas increasingly give expression to the widening gap between ‘rich’ and ‘poor’ Meru and underline the direct relation between the epidemic and the threat of growing social disparities. P. Wenzel Geissler and Ruth J. Prince analyse various concepts of touch among the Luo in western Kenya and indicate how notions of sociality and sharing are affecting the ways in which people in the region deal with the bodies of sick and dead relatives or community members. Johanna Offe argues that in Zambia the bodies of (potentially) HIV-infected widows are represented not only as ‘endangered’ and vulnerable, but also as immoral, death-bringing and dangerous. At the same time, she shows that widows themselves often make strategic use of this latter discourse as it gives them a possibility for protecting themselves against the sexual advances of men. Angelika Wolf draws attention to the fact that orphans in Malawi – rather unnoticed by public and policy discourses – have managed to establish child-headed households, thereby taking on the responsibilities of adults and adopting an active role in negotiating situations of risk as well as relationships of belonging. Finally, Fred Klaits focuses on the morality of remembering in Botswana and the ways in which ‘struggles of remembering’ among members of an Apostolic church in Gaborone are tied to the notion of ‘sharing blood’ as well as to more encompassing processes of procreation and social and spiritual reproduction. Taken together, the contributions in this volume describe vividly how families, communities and health professionals are attempting to make sense of the AIDS crisis and what dilemmas they are experiencing in their efforts to develop socially and morally acceptable strategies in dealing with the death and suffering of relatives and community members and the consequent disruption of social and reproductive relationships. They argue that an anthropological account of AIDS will often be not so much about HIV/AIDS in the narrow sense of the term – or about the ‘patients’, ‘carers’ and ‘risk groups’ that have become the targets of numerous HIV/AIDS inter14

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vention programs – but rather about the often contradictory social, cultural and moral struggles that have been triggered by the high infection and morality rates associated with the disease. In this regard, the authors shed new light on the transformation of social and moral orders in various African societies, which have long been affected by the increasingly marginalised position of the continent in the context of a global modernity.

Notes 1. That such labels may be misleading is argued by Bornstein (2005) who shows that grassroots NGOs and community-based organisations in Zimbabwe have become increasingly intertwined with transnational funding policies and structures. 2. We are well aware that there are different approaches to the anthropological study of HIV/AIDS in Africa and that the close focus on ethnography and social context adopted in this book is only one among them. In particular, the importance of previous studies relating to the effectiveness and appropriateness of HIV/AIDS interventions should be mentioned here (e.g. Green 2003). Furthermore, this book is not meant to be representative of the African continent as a whole. Thus, if we speak about ‘Africa’ here, we refer largely to the southern and eastern African region. 3. These aspects of disease and illness management have, of course, been core topics in the literature on medical anthropology for a long time; see especially the works of Janzen (1978), Feierman and Janzen (1992), Kleinman (1980, 1995), Baer, Singer and Susser (1997). 4. Apart from being connected to notions of purity and impurity (see Mogensen 1995), HIV/AIDS has also been associated with ‘traditional’ and Christian-religious idioms of illness and healing (Yamba 1997; Dilger 2007). It should also be emphasised that moral discussions on social and cultural transformations – and the blaming of women in the context of epidemic disease – are not unique to HIV/AIDS. This has been demonstrated by a wide range of historical studies focusing on illness, healing and gender relations in colonial and postcolonial Africa (see Vaughan 1991, Whipper 1972).

Bibliography Abu-Lughod, L. 1991. ‘Writing against Culture’, in R.G. Fox (ed.), Recapturing Anthropology. Working in the Present. Santa Fe: School of American Research Press, pp. 137–62. Agamben, G. 1998. Homo Sacer, trans. D. Heller-Roazen. Stanford: Stanford University Press. 15

DHansjörg Dilger Baer, H., M. Singer and I. Susser (eds). 1997. Medical Anthropology and the World System. Westport, Connecticut: Greenwood Publishing. Barnett, T. and A. Whiteside. 2002. AIDS in the 21st Century. Disease and Globalization. Houndmills: Palgrave and Macmillan. Baylies, C. 2004. ‘Community-Based Research on AIDS in the Context of Global Inequalities – Making a Virtue of Necessity?’ in E. Kalipeni et al. (eds), HIV & AIDS in Africa. Beyond Epidemiology. Oxford: Blackwell Publishing, pp. 15–28. Bornstein, E. 2005. The Spirit of Development. Protestant NGOs, Morality, and Economics in Zimbabwe. Stanford: Stanford University Press. Cameron, J.E. 2001. ‘Opening Address for the “AIDS in Context” Conference’, History Workshop of the ‘AIDS in Context’ International Conference, Johannesburg, 4–7 April 2001. Johannesburg: University of the Witwatersrand. Comaroff, Jean and John Comaroff (eds). 1993. Modernity and Its Malcontents: Ritual and Power in Africa. Chicago: University of Chicago Press. ———. 2000. Millennial Capitalism and the Culture of Neoliberalism. Durham: Duke University Press. Dilger, H. 2005. Leben mit AIDS. Krankheit, Tod und soziale Beziehungen in Afrika. Eine Ethnographie. Frankfurt am Main: Campus. ———. 2007. ‘Healing the Wounds of Modernity: Community, Salvation and Care in a Neo-Pentecostal Church in Dar es Salaam, Tanzania’, Journal of Religion in Africa 37(1): 59–83. Farmer, P. 1992a. ‘New Disorders, Old Dilemmas: AIDS and Anthropology in Haiti’, in G. Herdt and S. Lindenbaum (eds), The Time of AIDS. Social Analysis, Theory and Method. Newbury Park: Sage, pp. 287–318. ———. 1992b. AIDS and Accusation: Haiti and the Geography of Blame. Berkeley: University of California Press. ———. 1996. ‘On Suffering and Structural Violence: A View from Below’, Daedalus 125(1): 261–83. ———. 1999. Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press. Farmer, P., S. Lindenbaum, and M. J. Good. 1993. ‘Women, Poverty and Aids: An Introduction’, Culture, Medicine and Psychiatry 17(4): 287–297. Fassin, D. 2007. When Bodies Remember: Experiences and Politics of AIDS in South Africa. Berkeley: University of California Press. Feierman, S. and J.M. Janzen (eds). 1992. The Social Basis of Health and Healing in Africa. Berkeley: University of California Press. Ferguson, J. 2006. Global Shadows: Africa in the Neoliberal World Order. Durham and London: Duke University Press. Fredland, R.A. 1998. ‘AIDS and Development. An Inverse Correlation?’ Journal of Modern African Studies 36(4): 547–68. Green, E.C. 2003. Rethinking AIDS Prevention: Learning from Success in Developing Countries. Westport, CT: Praeger. Gupta, A. and J. Ferguson. 1992. ‘Beyond Culture: Space, Identity and the Politics of Difference’, Cultural Anthropology 7(1): 6–23.

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Heald, S. 2003. ‘An Absence of Anthropology: Critical Reflections on Anthropology and AIDS Policy and Practice in Africa’, in G. Ellison, M. Parker and C. Campell (eds), Learning from HIV and AIDS. Cambridge: Cambridge University Press, pp. 191–216. Herdt, G. 1987. ‘AIDS and Anthropology’, Anthropology Today 3(2): 1–3. Iliffe, J. 2006. The African AIDS Epidemic: A History. Oxford: James Currey. Janzen, J.M. 1978. The Quest for Therapy in Lower Zaire. Berkeley: University of California Press. Kleinman, A. 1980. Patients and Healers in the Context of Culture. An Exploration of the Borderland between Anthropology, Medicine, and Psychiatry. Berkeley: University of California Press. ———. 1995. Writing at the Margin. Discourse Between Anthropology and Medicine. Berkeley: University of California Press. Marks, S. 2002. ‘An Epidemic Waiting to Happen? The Spread of HIV/AIDS in South Africa in Social and Historical Perspective’, African Studies 61(1): 13–26. Mogensen, H.O. 1995. AIDS is a Kind of Kahungo that Kills: The Challenge of Using Local Narratives When Exploring AIDS among the Tonga of Southern Zambia. Oslo: University Press. Nguyen, V.-K. 2005. ‘Antiretrovirals, Globalism, Biopolitics, and Therapeutic Citizenship’, in A. Ong and S.J. Collier (eds), Global Assemblages. Technology, Politics, and Ethics as Anthropological Problems. Oxford: Blackwell Publishing, pp. 124–45. Nichter, M. 2002. ‘The Social Relations of Therapy Management’, in M. Nichter and M. Lock (eds), New Horizons in Medical Anthropology. Essays in Honor of Charles Leslie. London: Routledge, pp. 81–111. Ong, A. 2006. Neoliberalism as Exception. Mutations in Citizenship and Sovereignty. Durham: Duke University Press. Ostergard, R.L. 2002. ‘Politics in the Hot Zone: AIDS and National Security in Africa’, Third World Quarterly 23(2): 333–50. Robins, S. 2004. ‘“Long Live Zackie, Long Live”: Aids Activism, Science and Citizenship after Apartheid’, Journal of Southern African Studies 30(3): 651–72. Rödlach, A. 2006. Witches, Westerners, and HIV: AIDS & Cultures of Blame in Africa. Walnut Creek: Left Coast Press. Schoepf, B. G. 1992. ‘Women at Risk: Case Studies from Zaire’, G. Herdt and S. Lindenbaum (eds), The Time of Aids. Social Analysis, Theory, and Method. Newbury Park: Sage Publications, pp. 259-286. ———. 2001. ‘International AIDS Research in Anthropology: Taking a Critical Perspective on the Crisis’, Annual Review of Anthropology 30: 336. Schönteich, M. 1999. ‘Age and AIDS: South Africa’s Time Bomb?’African Security Review 8(4): 34–44. Setel, P. W. 1999. A Plague of Paradoxes. AIDS, Culture, and Demography in Northern Tanzania. Chicago: The University of Chicago Press. Treichler, P. A. 1999. How to Have Theory in an Epidemic. Cultural Chronicles of AIDS. Durham: Duke University Press.

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DHansjörg Dilger Turner, V. W. 1967. The Forest of Symbols. Aspects of Ndembu Ritual. Ithaca: Cornell University Press. Vaughan, M. 1991. Curing Their Ills. Colonial Power and African Illness. Cambridge: Polity Press. Whipper, A. 1972. ‘African Women, Fashion, and Scapegoating’, Canadian Journal of African Studies 6(2): 329–49. Whyte, S. R. 1997. Questioning Misfortune. The Pragmatics of Uncertainty in Eastern Uganda. Cambridge: Cambridge University Press. World Bank/Africa Region. 2000. ‘Intensifying Action against HIV/AIDS in Africa. Responding to a Development Crisis’. Washington, D.C. Yamba, B. C. 1997. ‘Cosmologies in Turmoil: Witchfinding and AIDS in Chiawa, Zambia’, Africa 67(2): 200–23.

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I Giving Hope? Networks of Healing, Treatment and Care

DChapter 1 Beyond Bare Life: AIDS, (Bio)Politics, and the Neoliberal Order Jean Comaroff

To contemplate the shape of late modern history – in Africa or elsewhere – is impossible without the polymorphous presence of HIV/ AIDS, signal pandemic of the global here-and-now. In retrospect, its onset was uncanny: the disease appeared like a memento mori in a world high on the hype of Reaganomics, deregulation and the end of the Cold War. In its wake, even careful observers made medieval associations: ‘AIDS’, wrote Susan Sontag (1989: 122), ‘reinstates something like a premodern experience of illness’, a throwback to an era when sickness was, by its nature, immutable, mysterious and fatal. Such reactions make plain how the genesis of the pandemic affected our very sense of history, imposing a chronotope of its own, a distinctly unmodern sense of fate unfolding, of implacable destiny. By unsettling scientific certainties, AIDS also prefigured an ironic, postmodern future. As Sontag intuited, it marked an epochal shift, not merely in the omnipotent status of medicine, its dispassionate language of suffering, or even in the salience of death – the latter eclipsed by a preoccupation with life and our capacity to control it. AIDS also cast a premodern pall over the emancipated pleasures, the amoral, free-wheeling desires that had come to animate advanced consumer societies. Not for the first time, when those societies sensed a threat to their rational mastery, they sought to deflect it onto a primal other, onto Africa as embodiment of dangerous desire, projection of a not fully tameable self. 21

DJean Comaroff In more ways than one, then, AIDS represented the return of the repressed, the suppressed, the oppressed. Soon overwhelming the received limits of virology and immunology – and the restricted lexicon of bioscience – it set off an avalanche of myth making. There have been those, in the tradition of Nietzsche (1910: 77), who insist that modernity has banished such myth making, that it has condemned us to pain without meaning. In our day, says Jean-Luc Nancy (1997: 149), suffering is ‘no longer sacrificial’. Our bodies are broken and repaired, but ‘there is nothing to say’. But there certainly has not been a shortage of things to say about AIDS. On the contrary, it has sparked a veritable plague of images: what Treichler (1988) memorably termed an ‘epidemic of signification’. Striking the late twentiethcentury landscape like a ‘lightening bolt’ (Nancy 1997: 146), it cut a swathe at once awesome and absolute, marking the path of economic and environmental change that sped the evolution and transmission of new viruses, both across and within species (Davis 2005: 55). In the process, it signalled emerging biopolitical insecurities: unrecognisable aliens capable of disrupting existing immunities, penetrating once secure boundaries at a time of deregulated exchange. In the West, the disease prefigured a novel order of post-Cold War terrors: of protean, deterritorialised invaders who hijack our defences and now coexist with us in a deadly symbiosis, setting off rapidly mutating, mimetic forms of violence and counter-violence. It is a process that W.J.T. Mitchell (forthcoming) aptly terms the ‘cloning of terror’. As all this suggests, AIDS has been rewriting the global geopolitical coordinates within which we think and act. We may lack the nerve or imagination to theorise it adequately, but it has certainly been theorising us for quite a while. The threatening mutability of the disease challenges efforts to impose stable categories of recognition and exclusion in an already destabilised late-modern geography. The pandemic is savagely cosmopolitan, making visible dynamic, translocal intimacies and connections across received lines of segregation, difference and propriety. But AIDS has also revived old spectres, marking out pathologised publics and crystallising latent contradictions and anxieties. In so doing, it has exacerbated existing economic and moral divides on an ever increasingly planetary scale. Coming as it did at the time of a radical restructuring of the axes of

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a bi-polar world, and of the liberal-democratic nation-state and the workings of capitalism itself, the disease served as both a sign and a vector of a global order-in-formation – and with it, a new sense of the possibilities of the political. Here again, the timing has not been coincidental. It scarcely needs saying now that as states around the world set about outsourcing key aspects of governance and withdrawing from a politics of redistribution, the grand disciplinary institutions of the modern state have shrunk. The task of social reproduction – of schooling, healing, frail care – has been ceded to ever more complex publicprivate collaborations, to volunteer workers, and more-or-less viable ‘communities’ under the sway of regimes of ‘expert’ knowledge. If ‘family values’ are the all-purpose glue meant to ensure moral reproduction under these conditions, AIDS has served as the sign of all that imperils these values and a civilised future-in-the-world. In its primal association with non-normative sexuality, it also lends itself to a language of retribution, evoking strong emotions that, at least in the West, suggest heightened anxieties about sexual identity and desire at a time when relations among gender, power and production have been significantly reconfigured (Butler 1997: 27). In play, in all this, is the uncertain valence of citizenship. Here, too, AIDS has figured as a standardised nightmare (Wilson 1951). Across the world, as nation-states disengaged from the direct regulation of production, the political subject came to be defined less as a civic producer, homo faber, than as a consumer of services; the state, reciprocally, is expected to superintend service delivery, security and the conditions of ‘healthy’, untrammelled commerce. With the erosion, if not the erasure, of social categories rooted in nation, territory and class, identity vests ever more crucially in personal bodies: bodies defined at once as objects of biogenetic nature and subjects propelled by desire and choice. Would-be statesmen battle to balance reduced government with increasing self-realisation. AIDS epitomises core contradictions at issue in such discourse. For some, its onset made evident the dangers of laissez faire and a drastic reduction of the reach of the polis – the erosion of institutions of public health, for example, in the name of corporate science (Brazier 1989). But such critical, sociological reflection, at least in the global north, has been overpowered by another process already noted: a projection of the

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DJean Comaroff dystopic implications of neoliberalism onto the victims themselves. Thus, the archetype of the homosexual AIDS sufferer became the spectre of a world driven by desire sans ethical commitment. The hysteria that erupted in the United States with the first awareness of the epidemic demonstrated how crucial is the register of sexual ‘perversion’ to the neoconservative imagination (Berlant 1997). This mind-set strives to discipline expansive vocabularies of politics, social debate, and intimacy in terms of stark oppositions: nature and abomination, truth and deception, good and evil. Ever more assertively, sex is seen to hold the key to life – for good and ill. It is a fetish attributed with a decisive agency all its own. Much has been written about this, of course. But what AIDS discourse makes plain is the way in which sexuality instantiates the dark underside of the commodity: it typifies transaction cut free from moral regulation and social constraint, the ‘perversion’ of responsible reproduction and the generation of the kinds of wholesome appetites that animate market-driven interaction. In fact, an older politics of class and ideological struggle is being widely displaced by what Simon Watney (1990: 100) has termed a ‘politics of intense moral purity’, the sort made evident in the disproportionate part played by gay marriage in conservative debate early in the twenty-first-century United States and elsewhere. Just how pervasive is this politics of perversion? A liturgy of seamy evidence springs readily to mind. Recall a report that, in the 1990s, US Air Force’s Wright Laboratory had proposed to develop an ‘aphrodisiac’ chemical weapon to deliver a ‘non-lethal blow to the morale of enemy troops by provoking homosexual behaviour among them’.1 In Abu Ghraib, and also Guantanamo,2 rituals of dehumanisation projected stereotypes of depraved sexuality onto others, replaying technologies of an earlier colonial era. The enduring consequences of that history are writ large in the contemporary politics of HIV/AIDS in Africa. But I am running ahead of myself. My broad concern here is with how HIV/AIDS has been implicated in the world-altering processes that have reshaped the late twentieth-century international order; with the role it has played in redefining our moral geography and sense of biosecurity, in the rise of new kinds of political subjectivity and sociality, in the emergence of new configurations of integration and exclusion, prosperity and immiseration.

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Exporting the Pandemic: AIDS Goes South In the decades since HIV/AIDS was first identified, therapeutic advance has rendered it more manageable. As South African ‘actorvist’ Pieter-Dirk Uys puts it, it is now a ‘life sentence … not a death sentence’.3 Or rather, it should be. In point of fact, the most devastating burden of suffering has shifted to parts of the map where misery seems endemic, life is cheap and people are disposable. As has often been noted, mass-mediated images of the disease have had a signal impact on late twentieth-century Western constructions of ‘third world peoples’ as abject, intractable, doomed (see Treichler 1999: 210). Mbembe and Nuttal (2004: 348) suggest that contemporary images of Africa exceed even the archetypes of otherness implied in Said’s Orientalist paradigm. They are correct. In the current geography of exclusion, alterity is distinctly relative. The Muslim terrorist might have emerged as the arch opponent to American dominance since the end of the Cold War, but disease-ridden Africa now epitomises another otherness, less an axis of evil than of irrelevance. Bereft of strategic significance and unpromising as commodity market,4 the continent disappears behind colonial images of nature red in tooth-and-claw. Once more it becomes a site for European adventurism and philanthropy, exemplar of all that threatens the ‘natural’ reproduction of life: mothers whose wombs incubate death; leaders who court dissident science; men who rape virgins – even babies – to rid themselves of infection; children bereft of innocence, surviving on precocious sex and warfare. These circulating discourses intersect in complex ways with HIV/ AIDS as a lived reality in the postcolony. Here the condition is ever more common, and ever more contested, both a sign of exclusion and a source of sociality and political striving. For AIDS makes scandalously plain the human costs of economic marginalisation, the limited impact of humanitarian intervention and the toll of an ever more monopolistic control over the means of life itself. In many African countries, HIV revivifies scarcely suppressed memories of colonial oppression and medical neglect. Small wonder that the disease animates traumas which invert the phobias of the West: suspicions that it was inflicted on black populations by genocidal racists, by

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DJean Comaroff careless experimentation, by the CIA or by drug companies and their craven local sidekicks. Across Africa, moreover, northern nightmares play into a host of local anxieties and etiologies. The spread of AIDS has spurred the vilification of homosexuality, despite compelling evidence that its transmission here is predominantly heterosexual. It has also licensed the policing of other forms of sexuality not securely under the control of normative authority; hence, the demonisation of independent women, immigrants and youth. As Neville Hoad (2005:126) notes of South Africa, the sexualised language of colonial racism continues to stalk the politics of HIV/AIDS, provoking official denial in the face of the ‘silencing phantasm of sexual respectability’. Studied refusal to recognise the pandemic by some in authority perpetuates the association of race, sex and pathology. AIDS activists and educators struggle to break these associations and the conspiracies of displacement that perpetuate them. They aim to secure public places in which sufferers can acknowledge their status in unambiguous terms. In light of this struggle, a small gesture by Nelson Mandela a while back took on enormous significance. In announcing that his sole surviving son had succumbed to the disease, he declared: ‘The only way of making [HIV/AIDS] appear a normal illness like TB or cancer is to come out and say that someone has died of [it].’5 But the inaudibility of talk about AIDS is often less a matter of brute repression or secrecy than of complicated communicative practice in the context of radical uncertainty. Here nuanced registers and indirect forms of speech flourish, death being the unspoken referent around which signification has been reoriented. In South Africa, where one in five adults is said to be infected and some clinics report that nearly 40 per cent of women between twenty-five and twentynine years are HIV positive,6 maintaining the ambiguity of one’s ‘status’ can be an act of defiance or deference, self-preservation or resignation. The labour of sustaining the self in the face of AIDS produces its own configurations of space and time. Frédéric Le Marcis (2004: 454) speaks of the distinctive map of Johannesburg drawn by sufferers as they traverse the city in search of care. Their ailing bodies are places of intersection – of the public and the private, the official and the unofficial, the spoken and the unspeakable. All this suggests that AIDS in Africa – as fetish or taboo, disputed truth or brute reality – has been prolifically productive; pro26

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ductive in the manner of Marx and Foucault, in that the pandemic has given rise to its own forms of sociality and signification. In its wake, intimate pleasures become mortal risks, and patterns of physical and cultural continuity are challenged in unprecedented ways. Entire generations are being ‘stolen’ as children become mothers; and schools, orphanages.7 Where adult workforces are depleted and domestic incomes dry up, new orders of dependency, debt and custody take shape as do new etiologies, utopian vocabularies and visions of apocalypse – intensifying fears of human malevolence and witchcraft (Ashforth 2002). Such conditions breed desperate forms of inventiveness, representation and enterprise. Vibrantly expressive genres flourish around the pandemic. Its impact is also evident in the banality of everyday exchange. The accoutrement of death jostle ordinary domestic commodities on roadsides and in markets: coffins, wreaths, sacrificial beasts and a melange of medicaments. Communities struggle to find the time and place, and the ritual and financial means, to process the weight of mortality, thus to avoid the ultimate abjection of ‘bare death’.8 The prospect of being unable to dispatch the dead with due ceremony marks the null point of social viability, as threatening to an imagined future as is bare life in the present. While it often disrupts received signs and practices, AIDS can also authorise strong new associations and visions of the common good. Those who embrace a politics of ‘positive’ identity defy silence and invisibility by becoming emphatic embodiments of the disease. Members of the South African Treatment Action Campaign (TAC) wear its bold T-shirts like a uniform and use diagnostic indices as person identifications; they introduce themselves at support group meetings, for example, by announcing their CD4 T-cell counts and viral loads (Robins 2004a: 7). In these contexts, claiming positive identity can be tantamount to a conversion experience, quite literally, a path to salvation, since identification can bring access to medication and material support. A positive South African put it thus; ‘I am like a born again. … It’s like committing yourself to life because the drugs are a life-time thing. ARV’s are now my life’ (2004a: 6). These testimonies redeploy the register of metamorphosis common in the Pentecostal churches that have burgeoned across the global south in neoliberal times: rebirth through AIDS is expressed in standardised narratives of self-transformation, a passage to new-found certainty and transparency and an end to deception, secrecy and un27

DJean Comaroff truth. Like Susan Sontag (1989) in her vain effort to expel metaphor from representations of illness, activists often fetishise the language of science in their efforts to limit AIDS’s disparaging associations9 – although, as we shall see, they also struggle to reconnect popular science to a lexicon of critical politics. The various forms of aspiration and anger, cooperation and conflict that have emerged in response to AIDS in Africa belie images of abjection. Not only have several countries – like Uganda, Senegal and Burkina Faso – made an impact on rates of infection. The pandemic has also triggered energetic forms of mobilisation that, in stark contrast to counterparts in the north, aspire to a more general politics of life, couched in terms of rights, citizenship and global equity. To this end, AIDS activists have forged broad, heterogeneous alliances with international movements, NGOs and private philanthropists, as well as with various corporate entities acting in the name of conscience, public relations or opposition to biotech monopolies. They have given voice to a range of national and transnational concerns, from entitlement to life-saving drugs and the rights of HIV positive migrants, through the ethics of medical experimentation, to the legal and moral status of intellectual property. In an era in which many Western intellectuals lament the ‘lasting eclipse’ of politics as we know it (Agamben 1998: 4), and anti-globalisation activists struggle to engage rapidly mutating opponents, AIDS campaigners in Brazil, South Africa and India have developed innovative repertoires of popular insurgency. Recuperating older idioms of mass struggle, they infuse both with a novel understanding of the uses of law, media and the agitprop arts, the better to come to grips with complex configurations of power within and beyond the state (see Farmer 2003). Joao Biehl (2004: 111) claims that in Brazil, AIDS campaigners have been especially adept at assembling techniques aimed at maximising equity in the face of liberalisation. The initiative, he argues, has emerged as one of the most viable sites for reforming a vision of democratic politics and ethics. There are grounds to question some of the claims made for entitlement to health citizenship, as we shall see: to ask whether the terms of an emancipatory biopolitics might hamper broader, more comprehensively conceived goals (see Giroux 2006). Yet it is undeniable that health activism in several parts of the south has proven particularly vexing to states seeking to reconcile the privatisation of public services with constitutional enfranchisement, 28

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especially where governments struggle to assert sovereignty against the force of translocal markets and civic/political organisations. This has been very obvious in the heated battle in South Africa between AIDS activists and the ruling African National Congress. It could be argued (see Robins 2004b) that the movement in support of a constitutional right to antiretrovirals (ARVs) – centred on an alliance between the Treatment Action Campaign (TAC) and Médicins Sans Frontiéres10 – has been uniquely capable of engaging the kind of public/private, local/translocal collaborations that comprise government in this day and age. The TAC has managed to link its specific, biopolitical demands to the terms of enfranchisement enshrined in the Freedom Charter,11 adopting the songs and commemorative calendar of the anti-apartheid struggle (Robins 2004b: 667).12 Yet it also has a thoroughly neoliberal appreciation of the sites and vehicles of extra-institutional politics: of the fact that corporate interest, no less than humanitarian empathy and guilt, can be mobilised to its cause – in large part by playing on the magnifying effect of media images. In addition, activists show a shrewd understanding of the degree to which politics itself has migrated to the domain of the law; thus their defiant ‘smuggling’ of generic drugs into a country that refused to provide them, and their willingness to sue the government over its obligation to make ARVs available to all. As this suggests, the movement embraces a politics of shame and passion: pace Nancy, it fulsomely engages the rhetoric of sacrifice, even martyrdom, epitomised in the compelling figure of its leader, Zackie Achmat. In a drama broadcast across the nation, a visibly ailing, Achmat refused to take ARVs (entreatment by the likes of Mandela notwithstanding) until the government, in 2003, agreed to universal provision. The techniques of such mobilisation impose their own limitations, of course, and AIDS activists in South Africa and elsewhere have faced many reverses. Yet their tactical creativity underlines the ever greater salience of health in the engagement of rulers and subjects across the world. Why has the biomedical definition of ‘life’ become so central a site of contestation where other kinds of populist politics – the politics of labour movements, for instance – are faltering? Why is it that, in many places, access to medicine – rather than, say, jobs, or freedom from war – has come to epitomise citizenship, equity and justice (see Petryna 2002; Biehl 2004)?13 How might the struggles surrounding HIV/AIDS shed light on various theories about the 29

DJean Comaroff shape of late modern politics – from those focused on the impact of liberalisation, to those preoccupied with the state of exception, or novel intersections of governmentality and sovereignty?

Life and Nothing But? Homo Sacer and the Politics of Salvation To reflect on the increasing centrality of biopolitics in our time has become commonplace. Hannah Arendt (1958: 320f.) long ago identified a modern preoccupation with what she termed the ‘immortality’ of ‘life itself ’. This fixation, she argued, was the consequence of a growing sense of individual mortality, giving rise to a compensatory concern with the ‘everlasting process of the species mankind’. Foucault (1978), famously linked the preoccupation with life to the birth of modernist politics. Agamben took this a critical step further. The ‘production of a biopolitical body’, he argues, ‘is the original activity of sovereign power’ (1998: 6). Nor is this unique to our time: the secret of modern and archaic power alike, he insists, is its capacity to control ‘bare life’ by excluding it from a meaningful social existence. Bare life is thus paradoxically made part of ‘the political’ by the very fact of its exclusion. But what is distinctive about modern politics, for Agamben, is that it ‘knows no value … other than life’ (1998: 10; emphasis added). To wit, ‘bare life’ is simultaneously its object and its subject: the object of state enforcement, the subject of projects of democratic emancipation. As exception becomes the rule, a contradictory process manifests itself. A predisposition to human liberation and a tendency toward state fascism collapse into each other, rooting themselves in the same ground: the ‘new biopolitical body of humanity’ (1998: 9). This con/fusion drives the political history of the West, culminating in a polis in which an unprecedented capacity and will to enhance life is rivalled only by the power to destroy it. As is well known, Agamben personifies this predicament in the enigmatic figure of homo sacer, one who ‘could be killed, but not sacrificed’. We are returned, here, to Nancy’s view that mortality is no longer sacramental – although Agamben is less concerned with the existential meaninglessness of modern existence than with the fact that it is at once sacred and scandalously dispensable. 30

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More than one recent observer has seen the apotheosis of homo sacer in the third world HIV/AIDS sufferer: a scarcely human being condemned, in an age of humanitarian empathy, to callous exclusion, to death without meaning or sacrificial value; a being left untreated in an era of pharmacological salvation (Biehl 2001; Kistner 2003). If, in Agamben’s words (1998: 84), ‘all men are potentially homines sacri’ in relation to sovereign power, the AIDS sufferer would indeed appear to be the everyman of our time: there, but for grace of geographical chance, go we all. And yet, as we have seen, the moral politics of AIDS belies these observations. It insists on making death sacrificial once more. It is hardly surprising that in the world after 9/11, in which crisis and exception have become routine, in which the classical Weberian model of sovereign state legitimacy seems less and less credible, Agamben’s passionate provocations have proven compelling. He has been credited, among other things, with repoliticising Foucault (Kistner 2003: 152) and with moving political philosophy beyond mere metaphysics (Hansen and Stepputat 2005:16). It is largely for this reason that his perspective has appealed to those grappling with the political valence of HIV/AIDS. For Joao Biehl (2001: 140), the communities of destitute, undocumented and infected persons that have emerged with the so-called ‘africanization of AIDS’ in Brazil are zones of abandonment, zones populated by homines sacri who belong neither to the living nor the dead. Even as activists, NGOs and the state collaborate to provide medication on a national scale, new lines of exclusion spring up to separate those meriting salvation from those condemned to the death camps. Biotechnology, here, thrives alongside structural deprivation. Jeffrey Kahn’s (2004) account of the detention of HIV positive Haitian refugees at Guantanamo Bay in the 1980s makes a similar point. Held by the US Immigration and Nationalization Service without access to legal council, this population provides unnerving evidence of the ways in which early AIDS policy foreshadowed the politics of terror. For Kahn, this is a prime example of Agamben’s model of sovereignty: the power to banish and disregard the law. Ulrike Kistner (2003: 135f.) argues that such a conception of sovereignty also makes sense of the notorious South African ‘AIDS War’, enabling us to move beyond moral condemnation to more reasoned historical-critical analysis. The government stance on the disease is less 31

DJean Comaroff ‘eccentric’, she suggests, than it is evidence of a shift in the generic nature of power. At issue is a ‘new role [for] the State in the arena of health and medicine’, one that reiterates classic notions of sovereignty as the control over life and death (2003: 3). In each of these three instances, Agamben’s allegory – the act of sovereign exception and the purgatory of homo sacer – is used to show how modern government stages itself by dealing directly in the power over life. Agamben’s ‘historico-philosophical’ argument is propelled by a number of forceful images, chief among them being the ‘camp’, understood less as an historical fact than as a paradigm, as the ‘hidden matrix’ against which normal political subjectivity comes to be defined (Agamben 1998: 166). But the very attraction of this mode of argument raises theoretical questions. For one thing, it moves by way of a very limited set of archetypes and metaphors – the ban as originary political act, bare life as the threshold from nature to culture, the camp as hidden matrix – to which all modern politics is reduced. For another, it hovers ambiguously between metaphysics and history. While such ambiguity can be highly suggestive, it can lead to oversimplification as well; it blurs precisely what demands specification in the effort to plumb the shifting political significance of AIDS in contemporary Africa, for example. What is more, it is unclear what kind of historical justification Agamben might offer for his contention that naked life, life shorn of civic and political rights, has become the sole preoccupation of modern sovereignty; unclear in comparison with the views, say, of Arendt (1958), who links the decline of political community and the fixation upon individual life-needs to the eclipse, under modern capitalism, of homo faber, builder of a ‘common world’. If, for Agamben, biopolitics has been the defining feature of modernity from the start, how are we to account for shifts within modern history itself – like the struggles currently under way over the very definition of life, over the ways that it is represented, patented and abstracted? These struggles are critical to understanding the power-play that surrounds AIDS in Africa and elsewhere: power linked to the rise of the life-sciences, for instance, whose engagement with biotechnology and capital has had a significant impact on the characterisation of human existence and the control of its value – and hence, on the shape of biopolitics. And just how useful in confronting these issues, is the concept of ‘bare life’, spoken of in terms of pure subjection, meaningful only as 32

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a sign of sovereign power? The question is crucial if we are to take seriously Agamben’s own exhortation to engage in a politics that recuperates civic being. It is also consequential if we are to make sense of the various ways in which HIV has been politicised, and politics biologised. For the stigmatising rhetoric of the disease, especially as it pertains to so-called ‘African AIDS’ (Patton 1988), has all too often fed off the slippage between metaphysics and history, archetype and instance. Complicated local histories and sociologies of the disease are obscured by grand allegories of exclusion, crisis and apocalypse. Yet while the will to power, or the effects of structural violence, might significantly sever life from civic protection and social value, no act of sovereignty can actually alienate humans from entailment in webs of signs, relations and affect. In the face of the social death endured by many AIDS sufferers, the will to assert visibility, kinship and attachment fuels the task of everyday survival. The insistence on positive life – life imbued with ordinary, future-oriented expectations – is palpable in the forms of mobilisation that press for recognition of the disease. So too is the rejection of bare death. Exclusion, here, is less a total exile from the law or social order than a dis/location between different moments and sites of its instantiation (see Bull 2004: 6). This suggestion takes us back to the three examples I introduced a moment ago, those that use Agamben’s insights to explore historically specific instances of the politicisation of HIV/AIDS.

From ‘Bare Life’ to Biocapital While the stories of AIDS sufferers abandoned in Brazil or detained in Guantanamo Bay show how forcefully modern power can root itself in exclusion, this perspective yields only a partial understanding of the dialectics at play in each case. Such processes hinge in large part on the effect on nation-states of neoliberal forces that undermine their capacities to control their economies and borders, or to interpolate their citizens as members of imagined polities; that is, on their ‘sovereignty’, in an older, modernist sense of the term. The Brazilian example makes plain that social exclusion nowadays has much to do with the inability of governments to subject the workings of international capital to their own command, and above all, 33

DJean Comaroff to control the pharmaceutical commodities and intellectual property that have become the elixir of life. In neither the Brazilian case nor that of the Haitian refugees are the politics they set in motion adequately captured by Agamben’s idea of sovereignty – save at the level of metaphor. However we wish to explain it, the abandonment of impoverished AIDS populations, especially in the global south, is producing new political subjectivities and sources of mobilisation: a fight for access to the means of survival that arises out of ‘politicized biology’ (Biehl 2004: 122). While it might be argued that this policitised biology is itself the product of fields of biopower, it does also seek to objectify and contest significant effects of that power. For if life itself has become the prime medium for exerting authority, it is also the stuff of grassroots striving: vide the various kinds of activism that have sprung up around the world to deal with HIV/AIDS, activism that insists on making visible and reversible the discriminatory effects of social and material exclusion on ailing bodies and beings. Indeed, this biopolitics from below is as much a product of late modern governmentality, of the process by which organized power disperses itself throughout a body politic, as are other features that have been associated with it – the forms of rogue sovereignty (of lawless, ‘prerogatory’ power) identified by Judith Butler (2004: 56), for instance. In fact, expanding biopolitical mobilisation makes plain that the dynamics at work in contemporary power relations, north and south, cannot be conceptualised merely by setting sovereignty in tension with governmentality, as approaches like Butler’s imply. Claims to entitlement based on suffering and injury are central to health activism, and they could be read – and sometimes are – as evidence of a politics of shroud-waving and abjection, of survival (‘bare life’) at the lowest common denominator of social being. But, AIDS organisers have also sought to build a coherent, critical social aetiology, thus to forge a narrative of agents and effects, of unresponsive statesmen and captains of global industry, who now personify control over the means of life and death. Just how this ‘politics of strategic reduction’ takes place was brilliantly exemplified in a drama staged outside the high court in Pretoria in April 2001, during the hearing of a case brought by thirty-nine large drug companies against the South African government for breaching international trade rules to import generic drugs. Crystallising a campaign that 34

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fired international opinion and a web of international support, activists donned large and life-like cardboard masks of the CEOs of major pharmaceutical companies, each identified by name and corporate logo (Figure 1).14 Soon after the eery, grinning visages were broadcast across the world, the companies, belatedly realising the damage done to their public image, withdrew their suit. Such mobilisation is hard to sustain, of course. Political practice that is located somewhere between the stability of a social movement and the inchoate romance of a defiant ‘multitude’ is hard to grasp, both for potential activists and those who study them. What has recently been termed a ‘politics of citizenship’ remains tied to liberal notions of subject and social contract and, while movements like the Treatment Action Campaign have been able to wield it to win collective rights, these victories have not been unequivocal. The TAC has been accused – notwithstanding its invocation of ‘mass action’ – of individualising AIDS and failing to deal adequately with its

Figure 1.1: Protesters wear masks in Pretoria against drug firms. Source: Reuters, 18 April 2001. 35

DJean Comaroff ‘socio-politico-economic’ implications (Decoteau 2005: 15). But like others striving to define a ‘commons’ amidst the ‘detritus of empire’ (Chari 2006: 3), these activists build with what comes to hand, seeking to forge alliances and to experiment with cocktails of techniques designed to engage the shifting assemblage of national and transnational forces that seem to control access to the means of life. As this suggests, a crucial feature of AIDS activism – at least, in the global south – is that it focuses ever more overtly on ‘biocapital’ (Sunder Rajan 2005: 21); that is, on the knowledge, patents and systems of exchange and command that make the difference between life and death. For healing is increasingly vested not merely in corporate bioscience, but in the drug as ur-commodity, liberated from regulation, even by the medical and caring professions. This returns us to the issues with which we began: the manner in which subjectivity, sexuality, pathology and citizenship are inflected ever more tightly by the logic of the commodity in both its productive and dystopic forms. Drugs have come to embody the key to life itself: the means of taking hold of qualities of body and mind so as to render them tractable in terms of the market. Pharmaceutical companies now aim to sell their products directly to the consumer (‘Ask your doctor about X …’); we are all incessantly interpolated as protopatients. No wonder that access to medicaments is the most contentious issue facing the World Trade Organisation. No wonder, too, that ARVs have become the key sacrament through which born-again sufferers are drawn into cults of salvation. The control exercised by biotechnology and the pharma-industrial complex over significant dimensions of the life process makes them sovereign forces in our world. Or so it appears in the plain-speak of African AIDS politics: the UN special envoy for HIV/AIDS to the continent reported in 2005, for example,15 that while the use of triple-dose therapy in the West had cut the numbers of children with HIV practically to zero, in Africa only 10 per cent of pregnant, infected women have access to the means of preventing mother-to-child transmission. Furthermore, there are still no dedicated paediatric ARVs on the market. The prevention of infant pain and death, he added, seems an insufficient incentive to drug companies in a world in which some ‘children are … consigned to the coffins of history’. It would seem that no account of biopolitics in the modern world, no notion of bare life, can neglect this imploding history of biocapi36

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tal. It is integral to the ways in which the substance of human existence itself can be objectified, regulated and struggled over. AIDS activists make plain that, if there is to be a redemptive politics of life, one that reconnects homo sacer to civic entitlement, it must find innovative ways of contesting monopolies over the essence of vitality: hence the targeting of patents and intellectual property rights – and the bald rhetoric that equates life and profit. As conventional politics falters in the face of ever more elusive collaborations of wealth, power and the law, such activism has sought to exploit the aporias of the market system. While it has hardly forced a capitulation on the part of governments and corporations, it has won some significant concessions. This returns us to my third example, Kistner’s account of the ‘politics of life’ at stake in the South African ‘AIDS War’. The notorious conflict over the disease waged between government – above all, former President Thabo Mbeki – and the national AIDS movement would appear to constitute bio-politics at its most literal. Here, Kistner (2003: 153) suggests, the effort to assert sovereignty enters directly into the dispensation of life and death; biomedical discourse becomes a critical affair of state – and also of nation. Mbeki refused to accept definitions of HIV/AIDS that characterise it as a sexuallytransmitted disease, arguing that they perpetuate Western racist stereotypes – and propensities to use African bodies for experimentation and profit (Hoad 2005: 104). AIDS, for him, marks the impact on African immune systems of endurings legacies of imperialism. From this perspective, remedy lies less in costly, toxic drugs than in the reversal of inequality. How useful is it to see in this fractious history ‘a new regime of bio-politics’ that draws ever more directly on the control of bare life, a regime whose sovereignty relies more on medical definitions than on the racial classification of governments past (Kistner 2003: 152)? Here again, I would caution against too monolithic a conception of politics, too reified a conception of bare life, too short-sighted a view of the present. Colonial regimes also ruled by putting the lives of their subjects on the line: by separating them from the means of survival, striving to reduce them to naked physical being under the sign of biological difference. While his regime was admirably postcolonial in many respects, Thabo Mbeki’s stance on AIDS spoke less to a new mode of sover37

DJean Comaroff eignty than to the continuing impact of colonial ideologies that tie life, even at its most bioscientific level, to racialised sexuality. AIDS dissidents reject the coital transmission of the disease because they see in it an accusation of black promiscuity. They remain doubtful that Western biological definitions can ever free themselves from stigmatising determinations, that hegemonic science can ever escape old associations of perversion with blackness. Those who oppose such views argue strongly for the possibilities of relatively independent scientific knowledge; as I have noted, the Treatment Action Campaign seeks to rid AIDS talk of the ravages of metaphor. But, while they advocate the uses of a non-sexist, non-racist science (Robins 2004b), the TAC also struggles against entrapment in a reductionist biology. Above all, it seeks to reconnect bioscience to a critical, redemptive sociology, promoting mass education about the social etiology of HIV, the political-economy of drug distribution and the constitutional right to health. In short, to a politics that links a notso-bare life to a more robust practice of citizenship (2004b: 670).

Conclusion The singular productivity of AIDS, then, flows from its status as both a sign and a vehicle of late-modernity: of the promises and risks of bold new freedoms; of the unruly conflation of love and death, creation and destruction – and, to return to Agamben, of the paradoxical coexistence of inclusion and banishment, human emancipation and inhuman neglect. But what AIDS also makes jarringly visible is that these conundrums are caught up in an ongoing dialectic of history and power, capital and geopolitics. Thus the disease, like Hurricane Katrina or the burning banlieus of Paris, also lays bare the colonial frontiers that bisect the landscape of our ostensibly ‘post’-colonial world. In the West, as among the privileged everywhere, AIDS may have been brought to heel. It has slipped behind what Mark Pilger16 describes as the ‘one-way moral mirror’ separating the secure from the indigent. The AIDS activism I described here seeks to shatter that mirror, to break into our self-insulating, self-referential circuits of communication and concern. In the process, it reminds us of something that – at least until very recently – we had all but forgotten: a disarmingly unalienated sense of politics as a positive calling.

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Notes I wish to express my gratitude to Steven Robins, Chris Dorsey, Dilip Goankar and John Comaroff for the generous insights they offered on this essay. 1. ‘US Military Gives “Make Love, Not War” New Meaning’, Cape Times, 17 January 2005, p. 1. See also ‘Pentagon Reveals Rejected Chemical Weapons’, New Scientist, print edition, 15 January, 2005 (http://www.newscientist .com/article.ns?id=mg18524823.800); accessed on 13 November 2005. 2. ‘Abu Ghraib Tactics Were First Used at Guantanamo’, by Josh White, Washington Post, 14 July 2005 (http://www.washingtonpost.com/wp-dyn/ content/article/2005/0713/AR2005071302380.html; accessed on 13 November 2005). 3. ‘Comrade Clowns, My Inspiration’, Pieter-Dirk Uys, Cape Times, 10 February 2005, p. 9. 4. Ironically, current evidence suggests that, despite its endemic poverty, Africa remains a profitable site for direct Western investment (Comaroff and Comaroff 2006). 5. ‘Madiba mourns: Obituary’, Lloyd Gedye and Sapa, Mail and Guardian, 7–13 January 2005, p. 3. 6. More Aids in South Africa, (http://uplink.space.com/showflat.php?Cat=& Board=humanbio&Number=271723&page=8&view=collapsed&sb=5&o= 0&fpart; accessed on 16 November 2005). 7. ‘Hut by Hut, AIDS Steals a Middle Generation in a Southern Africa Town’, New York Times, 28 November 2004, pp. 1, 14, 15. 8. ‘AIDS Takes a Grim Toll on African Families, Even after Death’, The New York Times, 16 December 1998, pp. 1, 14. 9. Critics have accused TAC of downplaying the often severe side-effects of ARV medication; activists in the US, by contrast, have struggled to make drug companies acknowledge the complex consequences of treatment (Decoteau 2005:14f.). Claims for the ‘manageability’ of AIDS medication in South Africa must be see in relation to the assertion by so-called denialists that ARVs are deadly poisons. 10. Also active on the national scene are the National Association of People Living with HIV/AIDS (NAPWA) which, while not as internationally visible as TAC, organizes a network of support groups, the AIDS Law Project at the University of the Witwatersrand and a string of local and translocal NGOs (see Le Marcis 2004; Robins 2004). 11. This document, ratified at the Congress of the People, held at Kliptown, Soweto in 1955, was the benchmark of opposition during the years of apartheid rule. Its terms included a demand for a multi-racial, democratically elected government, equal opportunities, the nationalization of banks, mines and heavy industries, and a redistribution of land. In 1956, 156 people involved in the creation and ratification of the Freedom Charter were charged with treason (see Worden 1994: 104f.). 12. Zackie Achmat, one of TACs founders and its most charismatic embodi-

39

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14. 15. 16.

ment, affirms that the movement strives to structure its activities according to the old anti-apartheid calendar of struggle (personal communication). ‘Turning disease into political cause: first AIDS, and now breast cancer’, Jane Gross, The New York Times, 7 January 1991 (http://query.nytimes .com/gst/fullpage.html?sec=health&res=9D0CE1DE1F38F934A35752, accessed on 4 April 2006). ‘Drug Giants Made to Swallow Bitter Pill’, Charlotte Denny and James Meek, The Guardian, 19 April 2001, p. 12. ‘Africa’s Children Left out of HIV Treatment Breakthrough’, Stephen Lewis, The Sunday Independent, 13 February 2005, p. 9. ‘Wave of Shame’, John Pilger, Mail and Guardian, 7–13 January 2005, p. 7.

Bibliography Agamben, G. 1998. Homo Sacer, trans. by Daniel Heller-Roazen. Stanford: Stanford University Press. Arendt, H. 1958. The Human Condition. Chicago: University of Chicago Press. Ashforth, A. 2002. ‘An Epidemic of Witchcraft? The Implications of AIDS for the Post-Apartheid State’, African Studies 61(1): 121–42. Berlant, L. 1997. The Queen of America Goes to Washington City: Essays on Sex and Citizenship. Durham, NC: Duke University Press. Biehl, J. 2001. ‘Vita: Life in a Zone of Social Abandonment’, Social Text 68(19:3): 131–49. ———. 2004. ‘The Activist State: Global Pharmaceuticals, AIDS, and Citizenship in Brazil’, Social Text 80(22:3): 105–32. Brazier, A. 1989. A Double Deficiency? A Report on the Social Security Act 1986 and People with Acquired Immune Deficiency Syndrome (AIDS), AIDS Related Complex (ARC), and HIV Infection. London: The Terrence Higgins Trust. Bull, M. 2004. ‘States Don’t Really Mind Their Citizens Dying (Provided They Don’t All Do It at Once): They Just Don’t Like Anyone Else to Kill Them’. London Review of Books 26(24): 3–6. Butler, J. 1997. The Psychic Life of Power: Theories in Subjection. Stanford, CA: Stanford University Press. ———. 2004. Precarious Life: The Powers of Mourning and Violence. London and New York: Verso. Chari, S. 2006. ‘Imperial Debris and Political Striving in Durban’, American Association of Geographers Annual Meetings, Chicago, 9 March 2006. Chicago: American Association of Geographers. Comaroff, John and Jean Comaroff. 2006. ‘Law and Order in the Postcolony: An Introduction’, in Jean Comaroff and John Comaroff (eds), Law and Disorder in the Postcolony. Chicago: University of Chicago Press, pp. 1–56. Davis, M. 2005. The Monster at Our Door: The Global Threat of Avian Flu. New York: The New Press. 40

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Decoteau, C. 2005. ‘The Diseased Body Politic: The Bio-Politics of HIV/AIDS in South Africa’. International Symposium ‘AIDS and the Moral Order’, Freie Universität Berlin, Institute of Social and Cultural Anthropology, Berlin 3-6 March 2005. Farmer, P. 2003. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press. Foucault, M. 1978. History of Sexuality, Volume 1: An Introduction, trans. R. Hurley. New York: Random House. Giroux, H. A. 2006. ‘Reading Katrina: Race, Class, and the Biopolitics of Disposability’. Unpublished manuscript. Hansen, T. B. and F. Stepputat. 2005. ‘Introduction’, in T. B. Hansen and F. Stepputat (eds), Sovereign Bodies: Citizens, Migrants, and States in the Postcolonial World. Princeton: Princeton University Press, pp. 1–36. Hoad, N. 2005. ‘Thabo Mbeki’s AIDS Blues: The Intellectual, the Archive, and the Pandemic’, Public Culture 17(1): 101–27. Kahn, J. 2004. ‘Quarantine and the Camp: HIV-Positive Haitians at Guantanamo Bay, Cuba’. ‘The Twenty-first Century Seminar’, University of Chicago, Fall 2004. Kistner, U. 2003. Commissioning and Contesting Post-Apartheid’s Human Rights: Aids – Racism – Truth and Reconciliation. Münster: Lit Verlag. Le Marcis, F. 2004. ‘The Suffering Body of the City’, Public Culture 16(3): 453–77. Mbembe, A. and S. Nuttall. 2004. ‘Writing the World from an African Metropolis’, Public Culture 16(3): 347–72. Mitchell, W.J.T. Forthcoming. ‘Cloning Terror: The War of Images, 9/11 to Abu Ghraib’, in C. Diarmuid (ed.), After Beauty. London: Tate Gallery Publications. Nancy, J. 1997. The Sense of the World, trans. Jeffrey S. Librett. Minneapolis and London: University of Minnesota Press. Nietzsche, F. 1910. The Genealogy of Morals: A Polemic, trans. H. B. Samuel. Edinburgh and London: T.N. Foulis. Patton, C. 1988. ‘Inventing African AIDS’, City Limits 363 (September 15–22). Petryna, A. 2002. Life Exposed: Biological Citizenship After Chernobyl. Princeton: Princeton University Press. Robins, S. 2004a. ‘ARV’s and the Passage from “Near Death” to “New Life”; AIDS Activism and “Responsibilized” Citizens in South Africa’. WISER and CRESP Symposium on ‘Life and Death in the Time of AIDS: The Southern African Experience’, 14-16 October 2004. ———. 2004b. ‘“Long Live Zackie, Long Live”: AIDS Activism, Science and Citizenship after Apartheid’, Journal of Southern African Studies 30(3): 651–72. Sontag, S. 1989. Illness as Metaphor and AIDS and its Metaphors. New York: Anchor Books. Sunder, Rajan, K. 2005. ‘Subjects of Speculation: Emergent Life Sciences and Market Logics in the United States and India’, American Anthropologist 107(1): 19–30. 41

DJean Comaroff Treichler, P. A. 1988. ‘AIDS, Homophobia and Biomedical Discourse: An Epidemic of Signification’, in D. Crimp (ed.), AIDS: Cultural Analysis/Cultural Activism. Cambridge, MA.: MIT Press, pp. 31–70. Watney, S. 1990. ‘Missionary Positions: AIDS, “Africa”, and Race’, in F. Russell et al. (eds), Out There: Marginalization and Contemporary Cultures. Cambridge, MA: MIT Press and the New Museum of Contemporary Art, pp. 89–103. Wilson, M. 1951. ‘Witch Beliefs and Social Structure’, American Journal of Sociology 56: 307–13. Worden, N. 1994. The Making of Modern South Africa, 2nd ed. Oxford: Blackwell.

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DChapter 2 Spiritual Insecurity and AIDS in South Africa Adam Ashforth

Introduction The biological assault upon African populations afflicted by the HIV epidemic, coupled with the attendant medical and educational responses, marks a moment of dramatic social and cultural change in South Africa. The demographic impact of the current levels of infection will be profound. One-fifth of the South African adult population will soon be dead. Even with treatment, AIDS patients on antiretrovirals are only expected to live an additional four years. Life expectancy at birth is plummeting; infant mortality is rising. The epidemic is fracturing households and communities, placing everincreasing strain on support networks. The ways in which people make sense of this suffering and find meaning in the misfortunes afflicting them will not only affect the ways in which people cope, or fail to cope, with illness and death, but will also impact upon the rates at which future generations become infected. Any effort to alter the course of the epidemic that fails to understand its cultural dynamics, particularly at this moment in the history of the epidemic when treatment is emerging as a possibility for those afflicted in poor countries, will either fail or have unintended consequences that may make matters even worse. In my book Witchcraft, Violence, and Democracy in South Africa (Chicago 2005), I anatomise the sources of spiritual insecurity in everyday life – the sense of danger, doubt, and fear arising from an awareness of exposure to invisible forces acting to cause misfortune – originating in four sets of power relations: amongst persons in social 43

DAdam Ashforth contexts, conditioned by a presumption of others’ access to invisible forces; between persons and substances, images, and objects deemed to posses powers to heal and/or harm; between persons and invisible beings such as deities, spirits, and ancestors; and within the realms of personhood such as those described as ‘body,’ ‘mind,’ ‘spirit,’ and ‘soul’. In that work, drawing from fieldwork in Soweto, I seek to identify the questions emerging in everyday life pertaining to spiritual insecurity, the resources people draw on in seeking answers, and the uncertainties that arise in the process. Here I want to identify some patterns of emergent questions pertaining to the epidemic in its current phase. These questions can be categorised as questions of agency, danger, and vulnerability. Questions of agency include the problem of interpreting the nature of the agency of the HIV virus, along with the various other agencies involved in accounts of immunity and therapy, and assessing how those agencies relate to the myriad other invisible agencies responsible for well-being and misfortune in life (such as God, the ancestors, spirits, and witchcraft). Questions of danger include reckonings of the power of the new invisible agencies in relation to other forces, as well as the new dangers posed by the disease and the death it is bringing, which cannot be accounted for by discourses of tradition or modernity. Emergent questions of vulnerability are those reflecting upon the sense of exposure to harm being produced in the new circumstances and how persons can secure themselves against it.

‘Body Soldiers’, Snakes and the Concept of the ‘Antiretroviral’ A central issue in the roll-out of anti-retroviral therapy (ART) involves how to translate the concepts of the virus, the immune system, and antiretroviral drugs to people with only limited education and limited exposure to biomedical theories of disease. Central to this problem is the question of agency: How does the agency inherent in this thing we are calling a ‘virus’ relate to other forms of agency long known to cause harm and misfortune? Furthermore, how do the powers and agencies called upon in the quest for security in everyday life relate to the agency of the virus and the powers of the substances and procedures designed to resist it? 44

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In discussions with voluntary counselling and testing (VCT) counsellors employed in the Africa Centre’s HIV surveillance project (which has established 18 counselling centres throughout a demographic surveillance site in northern KwaZulu/Natal, where persons who have been tested during the HIV surveillance can obtain confidential results using private-public key encryption on hand-held computers), two everyday metaphors have been found to dominate understandings of the disease. The first invokes the metaphor of dirt and describes the infection as a form of pollution: ‘dirty blood’. Many illnesses and everyday maladies in this part of the world are understood as the results of pollution, and the procedures of cleansing – particularly using purgatives and emetics – are staples of non-medical healers of all varieties. Some of these forms of pollution derive from breach of moral codes or ‘taboos’; others are the result of more mundane encounters with filth (Ashforth 2005). HIV, then, can be presented as another form of dirt in the blood, and antiretrovirals serve as a cleaning agent. The second metaphor frames the infection in terms of warfare. In this account, the body is being attacked by destructive forces which kill its ‘soldiers’ – amasojha omzimba in Zulu. VCT counsellors in the Hlabisa District, with whom I have discussed this issue, are adamant that the concept of ‘body soldiers’ is an ancient Zulu notion. It cannot be found, however, in the work of ethnographers of Zulu medicine such as Arthur Bryant (Bryant 1970; Conco 1972; Ngubane 1977). It is, most likely, a Zulu translation of the concept of immunity. ‘Amasojha’ is, after all, a phonetic rendition in Zulu of the English word ‘soldiers’. In the ART clinic at Hlabisa Hospital, where the roll-out of drugs is beginning, VCT counsellors use a video entitled ‘Adherence to Anti-Retroviral (ARV) Therapy: A Life Choice’ in preparing patients for admission to their ART program. The video was written and produced by a Yale medical school student, Ilene Yi-Zhen Wong, for a doctoral dissertation project, and is now being distributed by the Department of Health, dubbed into local languages from its original English version, as a standard teaching aid for ARV clinics around the country. The script explains immunity, HIV, and ARVs: As you may know, your body’s immune system – or amaso tsha amzimba [sic] is an army of soldier cells that guard your body from sicknesses like HIV. But HIV is a particularly bad sickness because it not only fights your 45

DAdam Ashforth body, it fights CD4 soldier cells. HIV is like a poisonous snake, sneaking up to the CD4 soldiers while they are sleeping and killing them. These snakes are small and wily, hiding, so the soldiers cannot find them to fight them. The snakes also breed very quickly, multiplying and multiplying until they overwhelm the CD4 soldiers and the body becomes very sick. This is where ARVs come in. ARVs can prevent the multiplication of the HIV virus. It is as if the body’s soldiers could find the HIV snake nests, and pour poison on the snake eggs to keep the eggs from hatching. However, ARVs are a kind poison that only works for a limited amount of time. They must be taken every day, in the morning and evening, or else the HIV virus can start reproducing. (Wong 2004: 59)

In her thesis describing the video project, Wong hypothesised that a ‘culturally-sensitive audio-visual patient education program may be of significant use in increasing patient understanding of concepts of resistance and medication-taking skills, particularly in areas of low literacy’ (2004: 2). Her project demonstrated that ART patients were better able to answer questions about adherence to therapy after viewing the video, though she was unable to address its impact on adherence over the long term. Use of the video in the rural KwaZulu context of Hlabisa Hospital has also shown it to be useful in communicating notions of infection and adherence. It is too early to know whether it is effective in fostering long-term adherence to therapy. Wong reports that patients watching the video were particularly responsive to the dramatisation, using tame snakes rented from a Johannesburg company called ReptiPet (2004: 19), of attacks by snakes on body soldiers: The wisdom of using a snake-soldier metaphor to describe the replication of the HIV virus was illuminated when one of the pharmacist viewers noted, ‘It was very smart of you to use the snakes; Africans do not like snakes’. Indeed, the cultural significance of snakes clearly made a visceral impact on many of the patient viewers, grabbing their interest and giving the abstract concept of an unseen virus a concrete manifestation that could be ‘fought against’ by the ‘soldiers of the body’ (immune system). (Wong 2004: 40)

Hlabisa patients were also moved by these images. Wong does not discuss the origin of the snake-egg metaphor other than to report that her script ‘was produced by the study author in conjunction with an experienced scriptwriter’ and submitted for review to a focus 46

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group consisting of VCT counsellors who ‘were specifically asked to comment on the appropriateness of the snake-egg metaphor’ (2004: 18). These same counsellors were also asked ‘what kind of animals were considered to be particularly frightening in their culture’ and ‘mentioned snakes as a potentially strong metaphor for Africans’ (2004: 26). The counsellors also told her that ‘they frequently depict the HIV virus as a kind of monster’ in their counselling work. The use of snakes in a therapy-adherence education video may well prove effective. The snake most certainly is a significant symbol in this part of the world. But there is more to its cultural significance than Wong seems to have been aware of, for there are different types of snakes, and different cultural traditions pertaining to them. For example, according to Axel-Ivar Berglund in his account of Zulu ‘thought patterns and symbolism’, pythons ‘symbolize togetherness, undivided oneness’ and their skins are used in creating the inkhatha yesizwe, the central symbol of Zulu national unity (Berglund 1976: 61). Berglund, following the work of A. T. Bryant, spent a great deal of time discussing the symbolism of snakes with Zulu informants in the 1960s, who insisted that a wide variety of snakes could be the manifestation of ancestral spirits, or ‘shades,’ charged with protecting the welfare of their descendants. These ‘shade snakes’ are also associated symbolically with childbirth and the transfer of the spirit or shades to newborns. In the words of one informant, a diviner: The child grows for nine months (lit. moons). It is born in the tenth. The shades drive it out from the womb. It glides out, leaving behind its skin (placenta). All this is like the snake that leaves its skin. It (the snake) is like the child when it comes out of the womb. The snake discards the skin as the child discards the placenta. (Berglund 1976: 96)

This same diviner also explained how he used the skin of a snake in treating difficulties relating to childbirth (1976: 97). Snakes are also, according to Edward Green, taken by many in southern Africa to symbolise the source of bodily power and purity (Green 1996). Snakes, particularly pythons, are often associated with the experience of the call to become a diviner, and many healers report spending time beneath water in a river or a lake communing with a snake. Zulu diviners use the vertebrae of dangerous snakes caught during their initiation to demonstrate their courage and the power of the ancestral spirits to protect them (Berglund 1976: 156). 47

DAdam Ashforth Different peoples have different traditions relating to snakes. Nowhere is this better described than in A. C. Jordan’s classic Xhosalanguage novel, The Wrath of the Ancestors, where a young Mpondomise royal marries a girl from another nation whom he meets at Fort Hare University. When the young bride notices a snake near her newborn baby, she panics and kills it, much to the horror of her husband’s people who attribute the snake to a manifestation of the ancestors and subsequently lay the blame for great misfortunes befalling the nation upon the heedless bride (Jordan 1980). In addition to real snakes being interpreted as representations of ancestral spirits, a variety of what might be called mythical snakes populate the south of Africa. Amongst these the best known are the snakes Mamlambo – a voracious creature with whom a person enters a sort of devil’s compact by sacrificing blood kin in return for power and wealth (see Hunter 1961: 287); and iNkosi ya Manzi, a giant snake that lives in water and wreaks destruction in the form of tornadoes (see Ashforth 1998). Perhaps the strongest image associated with snakes in southern Africa, however, is that of witchcraft. In witchcraft, the snake serves in two distinct guises: as an emissary of ‘familiar’, dispatched by a witch in order to cause harm and misfortune; and as a creature manufactured by a witch and dispatched in muthi, which, when eaten with food (either in a real meal or food taken in a dream), consumes the victim from within. This form of witchcraft is known, in Zulu, as idliso. Idliso and the ailments associated with it are usually translated into English as ‘poison’ and ‘poisoning’, but the understandings of the power of substances to cause harm that are typically engaged in notions of idliso and the substances that serve as the medium of engagement between the witch and his or her victim, are much broader than the concepts of ‘poison’ that inform biomedical notions of infection or basic principles of toxicology. The witch deploying muthi in the manner of idliso manufactures a creature that manifests itself in the body of the victim in a form resembling a snake, lizard, or crab which devours the victim from within, causing all manner of misfortune to befall the person in the process.1 When referring to poison in English, however, Africans with a vivid sense of the powers of muthi invoke a much wider field of action and intention in relation to the agency of substances than that typically imagined by toxicology (Ashforth 2005). A video embracing both the image of the 48

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snake and the idiom of poisoning is entering a cultural zone where interpretations of meaning cannot easily be predicted. Since the beginning of 2000, whenever the bi-annual census of the Africa Centre for Health and Population Studies in Somkhele (near Hlabisa) KwaZulu-Natal identifies a death in the study population, a nurse practitioner trained in conducting verbal autopsies interviews a household member knowledgeable about the circumstances of the death, preferably a caregiver. The interview is in the form of an algorithm of symptoms designed to facilitate a biomedical diagnosis of the causes of death in an area where death certificates are either non-existent or unreliable. Completed interviews are independently examined by two physicians who arrive at a diagnosis of probable causes of death. Verbal autopsy records, protected by anonymity, are entered into the Africa Centre’s database and linked to demographic, health, and socioeconomic records. During the course of the interview, the informants are also asked for their opinions regarding the cause of death, and these ‘layman’s diagnoses’ are recorded by the nurses, usually in a mixture of English and the Zulu vernacular, mixing indigenous and biomedical terms. These narratiave accounts are then entered into the database. They suggest important avenues of research into local understandings of illness and death, particularly in the discrepancies between biomedical categories of explanation and local discourses stressing supernatural factors. My examination of verbal autopsy records of 2,744 deaths during 2000 and 2001 in the ACDIS found that, while more than half of all deaths were AIDS-related, only one in every fifty informants interviewed in the case of an AIDS death mentioned either HIV or AIDS in relation to the illness and death. One in four of the deaths identified by physicians as AIDS-related are identified by informants as being caused by ubuthakathi, or ‘witchcraft’, a concept incorporating both the inherent capacities of human persons to cause supernatural harm and their use of substances in sorcery to do so. This is a surprising result, not so much for the extent of the belief in witchcraft – a wealth of anthropological literature over the past two decades (Moore and Sanders 2001) suggests this is an under-representation of the actual prevalence of witchcraft beliefs – but rather for the fact that people are prepared to speak openly to a stranger about matters that are highly sensitive in family and community relations (Ashforth 2005). For when an illness or death is said to be caused by witch49

DAdam Ashforth craft, it is interpreted by kin and others connected with the deceased as having been deliberately inflicted by others within the victim’s community. That is to say, such a death is akin to murder – only the forms of violence are believed to be occult (Ashforth 2001). Perhaps the advantage for families in speaking thus is to deflect blame for the death away from the victim. The most common form of witchcraft cited in the verbal autopsy reports is idliso. Symptoms of illness associated with the onset of AIDS – such as persistent coughing, diarrhoea, abdominal pains, and atrophy – have long been associated in this part of the world with the malicious assaults of witches known in Zulu as idliso and in Sotho as sejeso, both deriving from the root verb ‘to eat’ (ukudlisa, Zulu; ho ja, Sotho). Other ways of using muthi are also said to kill in a manner similar to AIDS. AIDS awareness accounts of HIV as an invisible agency inhering in the already potentially dangerous mess of bodily fluids that is the medium of exchange of sex resonates powerfully with local understandings of invisible agents involved in witchcraft that contaminate a victim and then begin to attack the victim by destroying the person’s defences, precipitating illness, misfortune, and death. The language of ‘attack’ and ‘defence’ common in virology and AIDS awareness discourses is precisely the same language used in describing the actions of poison and poisoners spoken of as witchcraft. The soldier-snake metaphors and the idiom of medicine as poison in the ARV therapy adherence video, then, while striking the medical student Ilene Wong as ‘culturally appropriate,’ gloss over a host of questions of agency emerging from the context of the epidemic, questions such as: What kind of snakes are these? Who sent them? Are they merely ‘natural’ or do they embody some sort of supernatural power or respond to some other person or being? How do procedures devised to protect against other sorts of dangers posed by snakes relate to ARVs and their mode of poisoning snake eggs? How do the powers embodied in ARVs relate to and compare with those inherent in the muthi used by traditional healers or the healing substances used by faith healers? Even for those who have not been exposed to the soldier-snake video, questions of agency remain pressing. While the metaphor of ‘dirty blood’ posits a passive form of agency in the polluting substance, the metaphor of warfare, with ‘body soldiers’ and invisible assailants of one kind or another, posits an active agency. My point 50

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is not that the video is misguided, but rather that a widespread process of cultural change is underway in this part of the world driven by the biological forces of the epidemic; the medical imperatives of securing treatment; the particularities of local schemes of interpretation; and struggles amongst local, national, and global authorities to produce definitive interpretations. The forms of a person’s relations with the invisible forces he or she experiences as acting upon the course of life are not always easy to discern.

Stigma, Pollution and the Anomalous Category of Terminal Disease The advent of antiretroviral drugs has resulted in a medical redefinition of HIV infection from a terminal disease (AIDS) to a manageable chronic condition. The Treatment Action Campaign, a social movement devoted to advancing an agenda of treatment in the face of the national government’s reluctance to address the epidemic, has made the slogan ‘AIDS is not a death sentence’ the centrepiece of its campaigns. This is quite a turnaround, for the message of AIDS awareness campaigns for more than a decade in this part of the world had been insisting on the incurability of AIDS. The notion of AIDS as terminal illness, moreover, has been propagated in an African context where the idea of an illness identified by particular symptoms being incurable was not part of the historical repertoire of healing practices. The question I want to address here is: What sort of impact might the availability of treatment and the reconfiguration of the nature of the disease have upon the stigma associated with AIDS? The subject of stigma associated with HIV infection and AIDS has become, in recent years, a central focus of the World AIDS Campaign. Most of the writing and research on the subject of stigma has drawn inspiration from the now classic work of Irving Goffman (Goffman 1963). Goffman outlined a framework for studying what he termed ‘spoiled identity,’ the ways in which bearers of certain distinctive traits were assigned to discredited social categories and were then mistreated accordingly. Since the HIV/AIDS epidemic was first identified in populations of male homosexuals, an already somewhat discredited group in many societies, Goffman’s concept of stigma served well in identifying key patterns in the social dynamics surrounding responses to the epidemic. The connection between the evident mis51

DAdam Ashforth treatment of persons ill with AIDS and the presumption that they were suffering from ‘stigma’ caused by the popular association of their suffering with membership in a social category practicing illicit sexuality became entrenched not only in the academic literature, but in public health campaigns and popular consciousness. This conception of stigma also connects with well-established politics of antidiscrimination such as those pioneered by social movements for civil rights and social equality. In June of 2001, the United Nations General Assembly, in a special session on HIV/AIDS, adopted a Declaration of Commitment aimed at tackling the problems of stigma and discrimination. In a document prepared as a ‘conceptual framework’ for the World AIDS Campaign’s focus year on stigma and discrimination, UNAIDS argued that ‘All over the world, the shame and stigma associated with the epidemic have silenced open discussion, both of its causes and of appropriate responses,’ causing guilt and shame amongst those infected, and leading ‘politicians and policy-makers in numerous countries to deny that there is a problem, and that urgent action needs to be taken’ (Aggleton and Parker 2002: 5). Yet as the authors of this document and others have pointed out, the conventional notion of stigma deployed in much public health research fails to account adequately for the complexity of responses to illnesses associated with HIV infection and AIDS.2 The UNAIDS ‘conceptual framework’ document argues that HIV/AIDS related stigma does not arise out of the blue, nor is it something dreamed up in the minds of individuals. Instead, like the responses to diseases such as leprosy, cholera and polio in the past, it plays to deeprooted social fears and anxieties. Understanding more about these issues, and the social norms they reinforce, is essential to adequately responding to HIV/AIDS related stigma and discrimination. Otherwise, we run the risk of developing programmes and interventions that are not comprehensive, thus achieving little impact. (Aggleton and Parker 2002: 7)

Amongst other effects of stigma, the UNAIDS report argues, are powerful psychological consequences for how people with HIV/AIDS come to see themselves, leading, in some cases, to depression, lack of self-worth and despair. [Stigma and discrimination] also undermine prevention by making people afraid to find out whether or not they are infected, and seek treatment, for fear of the reactions of others. They cause 52

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those at risk of infection and some of those affected to continue practising unsafe sex in the belief that behaving differently would raise suspicion about their HIV positive status. And they cause people with HIV/AIDS erroneously to be seen as some kind of ‘problem’, rather than part of the solution to containing and managing the epidemic. (Aggleton and Parker 2002: 5).

In my discussions of stigma with groups of VCT counsellors in South Africa, as well as in everyday conversations and media representations, the conviction has been expressed that the mistreatment of persons suffering from AIDS stems from the association between AIDS and illicit sex. This association has two puzzling aspects. The first, as I usually point out in these discussions, is that other instances of illicit sex do not evoke the same response. Virtually every family in this country, for example, has had to deal with infractions of sexual mores – such as the problem of pregnant, unmarried, teenaged daughters, or wayward sons being confronted by the relatives of pregnant girlfriends, or a father’s secret progeny appearing suddenly on the scene to demand recognition, or learning that a mother’s children have several different fathers. These events are rarely welcomed, occasionally causing feelings of shame for parents and children, and are always treated with discretion. They are almost never, however, a matter of eternal and sometimes fatal stigma in the manner of AIDS. Why, I ask my interlocutors, should the stigma attaching to AIDS be any different? Why should the fear of contact with HIV/AIDS victims be so intense? After raising such questions, I inevitably elicit discussions of the fact that AIDS is not just associated with sex, but with death. Illicit sex manifested in pregnancy, we all agree, can also be – once the shame and anger passes – an occasion for rejoicing over the birth of new life. Symptoms of AIDS presage suffering, pain, and death. To the question of why these symptoms, even if taken as a sign of divine punishment, should be the occasion for further mistreatment of the afflicted, however, there is no answer. The second puzzle arising from the widespread mistreatment of persons with AIDS stems from the near universality of knowledge regarding HIV and its modes of transmission. Virtually everyone in South Africa old enough to know about sex is able to answer correctly questions about HIV transmission. Moreover, most will answer questionnaires about attitudes to AIDS with responses indicating that they do not believe persons with AIDS should be discriminated against. 53

DAdam Ashforth Yet, persons with symptoms of AIDS are still shunned and avoided. Even people in contact with AIDS sufferers are sometimes avoided. Even Nelson Mandela, after spending time with a family of AIDS orphans, was subject to such treatment (Ashforth 2005: 154–56). Veena Das has suggested that, in the everyday life of communities, stigma and contagion are frequently elided (Das 2005). Something similar to this phenomenon seems to be happening in South Africa. AIDS stigma seems connected with concerns and uncertainties about the dangers of pollution from contact with the dead as well as shame about sex. Similar anxieties accompany other terminal diseases, most notably cancer. Long before AIDS became a major concern in South Africa, doctors noticed a tendency of patients to abscond from hospital when given a diagnosis of cancer (Wright 1997). African cancer patients also report anxieties about stigma similar to HIV/AIDS sufferers (Mtalane et al. 1993). Feelings of discomfort in the presence of the terminally ill are by no means restricted to Africans and AIDS. Yet, the widespread and widely noted phenomenon of social avoidance of persons with AIDS, as well as the tragic accounts of ostracism and abandonment that occur all too frequently, are confounded by a multitude of cases of selfless devotion to the care and treatment of patients, particularly by family members. The ACDIS interviews revealed that in most instances the mother, grandmother, or other relative struggled to ease the pain and suffering of the dying person, often in the most dire circumstances without running water, electricity, or money for food, let alone medical care. While disapproval of illicit sexuality no doubt plays a part in the mistreatment of persons with AIDS, as do psychological elements of discomfort pertaining to the unafflicted, something else seems also to be at work in the South African context. This dimension of mistreatment having to do with social avoidance of the afflicted, I would argue, is not properly described as ‘stigma’ in the conventional sense. Social avoidance, I have argued, is connected not with fears of contagion in the biomedical sense, but rather with issues of pollution (Ashforth 2005). These issues, however, are not of the sort that can be adequately addressed within existing frames of interpretive authority normally available in African everyday life. To oversimplify somewhat, though without presuming that culture is some sort of homogeneous body of shared representations and be54

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liefs, let me suggest three fundamental predicates of local notions of illness and death. The first is that illness is a struggle between forces responsible for health and well-being (including those possessed by spiritual agencies, substances, and those inherent in persons), and evil forces bent on causing suffering, misfortune and death. This struggle is inherently moral, a clash between good and evil forces external to the person, and a struggle for righteousness in the person and his or her relevant healing community. A huge variety of particular interpretations can be brought to bear upon this struggle. People struggling with illness are constantly forced to choose between various means of making sense of and coping with their troubles. In the forms of both ‘traditional’ and Christian ‘faith’ healing popular in southern Africa, healing is quintessentially a power struggle involving the client, his or her family, the healer, forces inherent in material substances known to the healer, ancestors, sundry other spirits, and, of course, God. All of these powers are involved in a contest against the forces – human, material and spiritual – bent on causing harm. Typically, when a person dies, he or she will be spoken of as having been called to join their ancestors and God – though in moments of grief their loved ones may wonder whether they have not rather been abandoned by those powers. Within such political and moralised conceptions of illness and healing, the notion of an incurable or terminal disease presents categorical difficulties. For to name an illness as ‘incurable’ in advance of the struggle to restore health and wholeness is to implicitly deny the power of healers, medicines, ancestors, spirits, and, ultimately, God to preserve life. No one I have ever met in Africa will readily deny these powers – particularly not in relation to someone loved and cared about. The second predicate of most discourse pertaining to illness and death in this part of Africa is that death is a process, a social process engaging the forces of persons in the community of the living as well as the dead. Death is not merely a discrete event. It is a transformation akin to that of birth, in which a person, rather than passing into nothingness, becomes another kind of being. Again, a wide range of interpretations are available to people grappling with questions about the nature and status of those who have ‘passed away’ – to say someone is ‘dead’ is almost taboo – provided by huge numbers of religious entrepreneurs as well as established churches. Ancestors, for example, are revered by some as protectors of a family’s welfare, 55

DAdam Ashforth while being denounced by others, often in the same family, as manifestations of evil spirits. To name a disease as incurable is tantamount to saying that a person is already dead, and thus to raise questions about the dangers of pollution that that person may present to others with whom they come into contact – questions which neither ‘tradition’ nor ‘science’ are currently able to answer. A person accustomed to local rituals and practices relating to death coming into contact with an AIDS victim may understand well that they have a minimal risk of catching HIV from that person, since they know HIV is a virus transmitted through sex, yet still fear the presence of this person for the same reasons they might fear the presence of the already dead. Since they know that people named as carrying AIDS will soon be dead, they might worry about whether contact with them risks exposure to those unknown and indefinable forms of pollution that may, perhaps, bring misfortune in a manner similar to that of the well-known pollution emanating from the already dead. The point here is not that there are ‘African traditions’ that teach the culture of AIDS. On the contrary. In the absence of authoritative traditions and respected authorities prepared to address the sources of their fears, people are forced to figure out the new dangers for themselves. Clearly one of the things they have figured out is that being in contact with people dying of AIDS is a dangerous matter, despite the repeated insistence of medical authorities, AIDS activists, and the occasional political leader (such as Nelson Mandela) to the contrary. The third predicate is that death is a moment of great danger – both to the person undergoing the transition from the living body to the spiritual entity and to those in contact with the body of the deceased. Dead bodies have customarily been treated with great care, respect, and reverence in Africa. This regard for the dead body is not only due to respect for the memory of the departed or the desire to pay tribute to human dignity. Nor is it simply a necessary precaution to ensure the departed’s transition from the bodily presence of a living person to the spectral presence of an ancestor, a process which exposes the person departing to vulnerabilities not unlike those facing a new baby in the process of being born. It emerges also from a sense that the presence of death can be dangerous and polluting, bringing upon the unwary all manner of misfortunes. 56

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When people attend burials, for example, they are careful to undergo a brief cleansing procedure, washing their hands in a basin of water with a couple of aloe leaves in it when returning from the cemetery. Tradition also demands that families of the deceased undergo cleansing rituals at intervals after the interment. These days, most people – especially younger people – have difficulty articulating quite what these procedures are meant to achieve other than a general necessity of cleansing in order to avoid ‘bad luck’ or ‘bad things’ such as illness or misfortune. Nonetheless, few would willingly ignore them. Nor do they treat these procedures as merely symbolic in the sense of being without material effect. Dead bodies are widely considered dangerous entities, and the cemeteries where they congregate are dangerous places from which emanate mysterious forces that can result in real physical misfortunes. Failure to cleanse oneself of invisible pollutants after attending a funeral or visiting the home of a recently deceased person opens one to the risk of illness and misfortune. One young man I know in KwaZulu insists that the government should be distributing latex gloves as well as condoms to protect people from the epidemic. Were a family not to provide a basin of water and aloe after a funeral in Soweto, their lapse would not only be considered a scandalous breach of ritual procedure, but also a criminal assault on public safety. A central contention in discussions of the imperative of providing drug treatments to AIDS patients in poor countries is that treatment will result in a reduction of levels of stigma (see Arachu and Farmer 2005). What is not clear in the literature, however, is how and why treatment might have this effect. In relation to what might be termed the sociological dimensions of stigma, the dynamics of discrimination and mistreatment of individuals and groups because of their spoiled identity, it is hard to see how treatment availability would alter the equation. Indeed, contrary to the assertions of activists like Paul Farmer, those who argue that stigma in this sense of the term is itself an obstacle to effective treatment may turn out to be correct (Valdiserri 2002). In relation to the cultural dimensions of stigma I have described above pertaining to fears of pollution emanating from the person of the ‘already dead,’ however, the availability – perhaps even the mere perception of availability – of treatments may have a dramatic effect by redefining the nature of AIDS as a death sentence and, hence, a potential source of pollution. Whether 57

DAdam Ashforth it further invigorates the domain of struggle between evil forces and those promoting the good remains to be seen.

Conclusion: Spiritual Insecurity and HIV/AIDS The cases discussed above illustrate the complexities of the cultural dynamics emerging in the wake of the HIV/AIDS epidemic. That these matters are in constant flux is important to remember. A wide variety of authorities are preaching, many of them quite literally, to people about the correct way of interpreting the nature of the forces evidently acting upon their lives and resulting in so much death. The AIDS awareness industry is a massive multi-million Rand operation. The national roll-out of antiretrovirals, though not as successful yet as many would like, has created the largest public-health AIDS treatment program in the world. Yet, in 2005 an estimated 571,000 persons were newly infected with the virus (Rehle et al. 2007: 197). I have tried to show in the above examples how questions about the dangers posed by invisible forces are emerging in the context of this epidemic, for which answers are provided by a multitude of conflicting authorities. These questions impinge upon the central enigmas of the social response to the epidemic: the problem of ‘denial,’ the resistance to behaviour change, the problem of ‘stigma,’ and the challenges of treatment arising from the transformation of a ‘death sentence’ to a ‘manageable chronic condition.’ Yet, just as few people subject to the epidemic can find reliable answers to these emergent questions that can withstand assault from all contradictory authorities, so social scientists should be wary of simple descriptions that purport to account for local responses to the epidemic. The cultural context within which the biological assault upon South African populations is taking place is one marked by generations of change consequent to large-scale processes such as labour migration, urbanization, industrialization, Christianization, and western education that have disrupted and transformed local social structures and knowledge systems (Ashforth 2005). Associated ritual practices have also been transformed, often in ways that exacerbate a general sense of exposure to evil and invisible forces. Everyday life is lived amidst multiple clashes of worldviews taking place within families, communities, and the country as a whole. Varieties of non58

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medical healing, premised upon access to invisible spiritual powers, abound. By showing how the apparently simple matter of explaining the action of antiretroviral drugs can open a snake’s nest of tricky questions, or how the apparently obvious issue of stigma can become a philosophical puzzle beyond the purview of either ‘traditional’ or ‘modern’ authorities, I hope to encourage more sustained inquiry by anthropologists and public health experts alike into the emergent questions surrounding HIV/AIDS in Africa. For only by investigating these in particular local contexts, and over time, can the unintended consequences of well-intentioned efforts at treatment and prevention be mitigated.

Notes 1. For a description of idliso in relation to biomedical interpretations of symptoms, see Conco (1972); for a psychological study of suffering from what was considered to be idliso, see Farrand (1988); and for accounts of traditional healers and AIC prophets comparing idliso with tuberculosis, see Wilkinson et al. (1999) and Oosthuizen (1992: 100), respectively. 2. For a critique of the theoretical underpinnings of public health discourse on stigma, see Arachu and Farmer (2005).

Bibliography Aggleton, P. and R. Parker. 2002. A Conceptual Framework and Basis for Action: HIV/AIDS Stigma and Discrimination. Geneva: UNAIDS. Arachu, C. and P. Farmer. 2005. ‘Understanding and Addressing AIDS-Related Stigma: From Anthropological Theory to Clinical Practice in Haiti’, American Journal Public Health 95(1): 53–59. Ashforth, A. 1998. ‘Reflections on Spiritual Insecurity in a Modern African City (Soweto)’, African Studies Review 41(3): 36–67. ———. 2001. ‘On Living in a World with Witches: Everyday Epistemology and Spiritual Insecurity in a Modern African City (Soweto)’, in H. Moore and T. Sanders (eds), Magical Interpretations: Material Realities. London: Routledge, pp. 206–25. ———. 2005. Witchcraft, Violence, and Democracy in South Africa. Chicago: The University of Chicago Press. Berglund, A. I. 1976. Zulu Thought-Patterns and Symbolism. Bloomington: Indiana University Press. Bryant, A. T. 1970. Zulu Medicine and Medicine-Men. Cape Town: Struik. Conco, W. Z. 1972. ‘The African Bantu Traditional Practice of Medicine: Some Preliminary Observations’, Social Science and Medicine 6(3): 283–322. 59

DAdam Ashforth Das, V. 2005. ‘Stigma, Contagion, Defect: Issues in the Anthropology of Public Health’. Conference ‘Stigma and Global Health: Developing a Research Agenda’, National Institutes of Health, Bethesda, 5–7 September 2001. Bethesda: National Institute of Health et al. Farrand, D. 1988. ‘Idliso: A Phenomenological and Psychiatric Comparison’, Ph.D. thesis. Johannesburg: University of the Witwatersrand, Faculty of Arts. Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall. Green, E. C. 1996. ‘Purity, Pollution and the Invisible Snake in Southern Africa’, Medical Anthropology 17(1): 83–100. Hunter, M. 1961. Reaction to Conquest: Effects of Contact with Europeans on the Pondo of South Africa, 2nd ed. London: Oxford University Press (for the International African Institute). Jordan, A. C. 1980. The Wrath of the Ancestors: A Novel. Cape Province: Lovedale Press. Moore, H. and T. Sanders. 2001. ‘Magical Interpretations and Material Realities: An Introduction’, in H. Moore and T. Sanders (eds), Magical Interpretations, Material Realities: Modernity, Witchcraft and the Occult in Postcolonial Africa. London: Routledge, pp. 1–27. Mtalane, L. J., et al. 1993. ‘The Experience of Terminal Illness among Zulu Speaking Patients and their Families’, International Journal of Nursing Studies 30(2): 143–55. Ngubane, H. 1977. Body and Mind in Zulu Medicine: An Ethnography of Health and Disease in Nyuswa-Zulu Thought and Practice. London: Academic Press. Oosthuizen, G. C. 1992. The Healer-Prophet in Afro-Christian Churches. Leiden: E. J. Brill. Rehle, T., et al. 2007. ‘National HIV Incidence Measures – New Insights into the South African Epidemic’, South African Medical Journal 97(3): 194–99. Valdiserri, R. O. 2002. ‘HIV/AIDS Stigma: An Impediment to Public Health’, American Journal of Public Health 92(3): 341–42. Wilkinson, D., et al. 1999. ‘Traditional Healers as Tuberculosis Treatment Supervisors: Precedent and Potential’, International Journal of Tuberculosis and Lung Disorders 3(9): 838–42. Wong, I.Y.Z. 2004. The Development and Assessment of an Innovative Video to Introduce Concepts of Adherence in Soweto, South Africa. Yale: Yale University School of Medicine. Wright, S. V. 1997, ‘An Investigation into the Causes of Absconding among Black African Breast Cancer Patients’, South African Medical Journal 87(11): 1540–43.

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DChapter 3 New Hopes and New Dilemmas: Disclosure and Recognition in the Time of Antiretroviral Treatment Hanne O. Mogensen

Introduction The AIDS epidemic is entering a new era due to the increasing availability of antiretroviral treatment in African countries. An AIDS diagnosis is no longer a death sentence, and in Uganda thousands of people have risen from their deathbed in the past one to two years (2005 and 2006). The predominant feeling among AIDS patients and their relatives in Uganda is presently one of new hopes – but also of new dilemmas. Complex issues of testing, recognition, disclosure and social support are changing form but are not disappearing. In this chapter I will use my ten years of experience with the AIDS epidemic in Uganda to discuss some of these changes. My first fieldworks in the country focused on other health issues, but in the 1990s AIDS was also omnipresent. The antiretroviral drugs that started entering the scene around the turn of the millennium increasingly coloured people’s lives and hence my research on the health care system and on health care seeking behaviour. Thus research projects focusing more specifically on the impact of this new treatment were initiated. Issues of disclosure and discrimination have been of great concern to patients as well as to those working with HIV/AIDS since the early years of the epidemic. Uganda has been hailed for its openness 61

DHanne O. Mogensen about AIDS, and nongovernmental organisations in Uganda have provided social and emotional support to patients and their relatives and promoted testing and open and positive ways of living with HIV/ AIDS since the late 1980s. What is said about the disease and people who are infected and how it is said have changed over the years, and it is reasonable to assume that antiretroviral treatment will bring yet other changes in how AIDS is talked about in the public sphere as well as in the local moral worlds and everyday social interactions (see Kleinman 1995). But will the drugs bring increasing openness or – as feared by the critics of this new focus on treatment rather than prevention – will they facilitate an absence of disclosure and hence cause further spread of the virus? As Kleinman has pointed out, there are many issues at stake in people’s lives (Kleinman 1995: 45). Being able to control other people’s awareness of one’s HIV status is but one of many concerns for a person who is dying. It also matters what happens to the relationship to one’s mother, sisters, uncles, friends; one’s access to resources; the future of one’s children; and so forth. Revealing and hiding one’s HIV status becomes part of the attempt to obtain that which matters, to achieve certain goals and, in Bourdieu’s words, to continue being part of the game (Bourdieu 1990: 66–68). It is inextricably tied to the wish to be recognized as a person who matters in everyday social interactions even when one is dying. In Ugandan kinship politics, family members have differential access to recognition and assistance from others in the family. Access to resources and knowledge is differentiated along gender and generational lines, but is also determined according to one’s moral standing, for example, whether one is married, has children, has completed school, shows appropriate respect and reciprocates financial assistance with morally appropriate behaviour, and so forth. Most people have relatives in urban as well as rural areas, and those with access to resources and urban health care are often under a lot of pressure from rural relatives. This burden has in some cases been intensified by the availability of antiretroviral treatment, while in other cases, it happens to be rural relatives who live within catchment areas of locally delimited AIDS projects with a high level of service. The anthropologist’s involvement in social life through long-term fieldwork makes it possible to obtain an understanding of disclosure as complex processes of interactions between social actors positioned 62

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in local moral worlds with differential access to knowledge and resources and where much is always at stake, won and lost. Disclosing and hiding, it then appears, are not absolute or exclusive processes. One may reveal or hide one’s HIV status to some and not to others, at some moments and not others, and one may sometimes do so in words and at other moments in silence or in actions. In the following I will give examples of these possibilities, with an eye to the changes taking place when antiretroviral treatment is introduced into a specific locality.

Uganda 1996: The Great Grandfather of Diseases In 1995 and 1996 I lived in a small house in the rural areas of eastern Uganda with Alexine, a woman in her forties. At times she would pace around the living room at night proclaiming her lack of belief in juogi, ‘evil spirits’ as she called them in English. ‘I do not believe in them,’ she would exclaim as she walked around the living room with clenched fists and prayed to God for protection against them. Only much later did I understand that the prayers to God for protection against the juogi she did not believe in were necessary because her lack of belief – directly translated from Dhopadhola, the local language (which belongs to the group of Nilotic languages) – did not mean lack of recognition of their existence but ‘lack of faith in them,’ ‘a refusal to base her hope in juogi’ (Mogensen 2002a). ‘If I pray to God no any child of mine will get sick. We will be protected from juogi,’ she explained to me. Alexine had four adult daughters in addition to the three-year-old and five-year-old girls living in the house with us. Now, ten years later, the two oldest ones have died, and the third is showing signs of recurring sickness. The recent death of this daughter’s eighteenmonth-old son has reinforced the concern about her health and whether it is heading in the same direction as her sisters’ did. Back in 1996, I knew little about her adult daughters though they occasionally turned up and visited us in the course of the year that I lived with their mother. I also rarely discussed AIDS with people in the village where I was carrying out fieldwork on healthcare-seeking behaviour and mothers’ interpretation of child health. ‘It is good that you are here to study children’s health,’ one woman had said at the 63

DHanne O. Mogensen information meeting I held in the village soon after my arrival, ‘but what if the mother is sick? Mothers get sick and mothers die. It is not enough to treat the children if the children get the sickness from the mother.’ I had hesitated then, not sure whether people used the word themselves, but my interpreter confirmed it was okay to do so. ‘I am also here to learn about AIDS. Please share your thoughts about AIDS with me,’ I answered. After a long silence another women got up and said: ‘No, we prefer talking about our children. There is nothing one can do about AIDS.’ ‘What do people call it?’ I asked. ‘Just AIDS,’ was the recurring answer. Or ‘the great grandfather, the one who rules and whom we can do nothing about.’ At night stories, poems and riddles were exchanged after dinner about things that happened ‘long long ago’ and things that are happening now, and also about AIDS: ‘The one who makes us slim. The one who has come to finish us all? We wonder who you are and why you have come. Why is it that you have come to rule us?’ On billboards in town young couples looked intimately at each other with condoms in their hands. In a weekly section of the national newspaper, explicit demonstrations were made of how to use condoms. In the village children played soccer with balls made of inflated condoms wrapped in banana leaves, which, as they said, ‘you can get anywhere.’ AIDS was no secret and Uganda is famous for its early and persistent openness regarding AIDS (see e.g. Allen and Heald 2004). But during that first year I did not become involved in any cases known to be AIDS. I followed mothers in their healthcare-seeking behaviour on behalf of their children, and I took notice of Alexine’s nightly exclamations and her explanation that thanks to her prayers ‘no any daughter of hers’ would get sick. But there never seemed to be reason to conclude that a child’s ailment was caused by AIDS, and nobody who passed away that year was said to have died from AIDS. There were many other things that could make people suffer and many diagnoses that did not extinguish all hope for survival (Mogensen 2000).

Uganda 2000: Keeping Hope Alive through Careful Speech In the years that followed my long-term fieldwork, I returned regularly on shorter follow-up fieldwork and kept in touch with the 64

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field site and the network established during the first year. I also increasingly got to know three of Alexine’s adult daughters: Nelly, Kate and Suzy, whom I came across in town as well as in the village. The part of eastern Uganda where I carried out my research is inhabited by the Jop’Adhola, a patrilineal and patrilocal group. After marriage the woman is ideally transferred from her father’s to her husband’s clan. Alexine, however, had left her husband after the birth of the three oldest daughters in the early 1970s. Throughout their childhood she had been travelling around the politically troubled and at times war-torn Uganda, making a living by buying and selling cassava, millet and charcoal while her children stayed at first with their father and his new wife and later with various matrilateral relatives (grandmother, grandmother’s sister, brothers and cousins of their mother). Meanwhile peace and political stability returned to Uganda, and Alexine had another three daughters with three different men. The three oldest ones dropped out of school and started working as maids or tried to survive in petty trades. They had lost contact with their father, and their maternal uncles had paid their school fees. Whether lack of school fees or their pregnancies came first depends on whether they themselves or their uncles tell their stories. But the fact is that none of them completed school, they all ended up having children without being married and they all had to provide for them with meagre and unreliable incomes. Alexine, her daughters and their children continued to stay occasionally with Alexine’s brothers and cousins in town and in the village. Alexine’s version of the story of their lives is one of her endless struggle for her children, and her daughters’ version is one of a mother often failing to live up to her responsibilities. Tensions pervaded their relationships, but they were also mutually dependent on each other and thus continuously turning towards each other. Alexine’s brothers and cousins played an important role in their lives, but their support could be sporadic. Furthermore, they did not hide their dissatisfaction with their sister’s growing number of children and grandchildren who were not able to provide for themselves. We are thus dealing with three generations of people who lack the support of a husband’s and/or father’s clan, who move in and out with different relatives and try to get along through temporary jobs and petty trade. They may be said to live on the margins of society, but at the same time these ‘margins’ are so densely populated, that we cannot talk about 65

DHanne O. Mogensen them as exceptions to the rules. There are many women who end up alone with children and no man to help them support them, and who struggle for their survival as traders in market places or in houses of better off families who employ maids. At times their children stay with them. But often they are placed with relatives in the rural areas. In the last months of 2000, the oldest daughter had passed away. Alexine and I spent several afternoons seated on a mat in her brother’s house in the village, where I had lived during my long-term fieldwork, where she still returned to for temporary shelter, and where she had paced around with clenched fists a few years earlier, and talked about the death of her daughter Nelly. With her eyes full of tears, Alexine said, ‘In fact people thought I knew about her sickness. But really, I didn’t know. When I went to Kampala last year to see her I noticed that she was now becoming weak. That is when I began realizing that she was sick. But I had to persevere and have a heart of controlling myself. Not minding. Not worrying too much. I was just patient.’ I apologized for bringing the subject up, but she insisted that she wanted to talk about it: ‘When I was in Kampala I saw that she was seriously sick and had changed completely. My brother told me to take her back to the village and care for her from here. By then I had moved to the place in Mawinde that my brothers had bought for me. You know, I could not continue to stay here on their land.’ Her stay in her brother’s house had indeed been temporary. The Jop’Adhola have a patrilineal segmentary lineage system akin to the one known from classical ethnographic descriptions of Niloticspeaking groups in eastern Africa (see, e.g., Evans-Pritchard 1940) in which it is (ideally) much harder for divorced women to return to their paternal families than in other patrilineal systems of eastern Africa (Håkansson 1994). Alexine’s brothers had, therefore, helped her get settled on a different piece of land in 1999. Still these brothers were the ones with whom Nelly took turns staying when in town. She much preferred being cared for in town when she started getting sick. In town one is closer to health services, and one has more possibilities of making a bit of cash that can be used for buying medicine. Alexine’s small piece of land could not even supply sufficient food for her, her small daughters and her mother. It was not a good place to be when seriously sick. Alexine continued: ‘After a few days 66

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in Mawinde, Nelly disappeared again and I had no way to return to Kampala to look for her. No money. No way. And I was not even told when she was badly off. I would have expected my brothers to come and tell me so that I could go and see her in her deathbed. But no one told me. They just brought her body after her death. Just like that. If I had not been saved, I don’t know, maybe I would have done something bad to myself. But God helped me and I became strong.’ ‘There was a time when my brother told me: “Nelly is badly off”, and I began crying. Suppose he had said, “My sister, let us go to Kampala and see her.” But he didn’t and I just saw her when the coffin was brought.’ Alexine’s despair was caused by her absence at the time of her daughter’s death: ‘What would you have felt like? I first died. I thank my brothers and the rest who participated, buying the coffin and everything. But if at least I could have stayed with her. Talked to her. At least with the other children whom I have lost, they were small, and they were sick from home. I tried my best to treat them, and I was with my relatives who were consulting and encouraging me.’ But her concern was also with people’s reluctance to believe that she did not know her daughter was dying: ‘Then sudden death. In fact, truly speaking, maybe people thought I knew. But I didn’t! I had not heard anything. I didn’t believe she was dying.’ One of her other daughters, Kate, had, indeed, told me that ‘it seemed mum did not even care. She never came to see Nelly on her deathbed. She just prayed to God so that no any daughters of her would die and claimed that she did not know Nelly was sick.’ These comments from Alexine and Kate demonstrate that not at any stage in these conversations was the term ‘AIDS’ used. However, I did not feel that the mother and sister were trying to cover up the cause of Nelly’s death. Their talk about her death illustrates that there are ways of talking about AIDS while being careful not to mention ‘AIDS’ as such. If we look more closely at what was said by Alexine, we will get closer to understanding the benefits of talking carefully. Alexine’s insistence that she did not know her daughter was sick combined with her emotional description of her increasing awareness that she was ‘getting weaker’ confused me until I remembered the lesson she had taught me years before through her nightly walks and refusal to believe in juogi. Juogi, as I have argued elsewhere, is a notion among the Jop’Adhola, which refers to various kinds of interferences, for better and for worse, in the life of the liv67

DHanne O. Mogensen ing which are beyond our understanding (Mogensen 2002a). Alexine had used the Dhopadhola words yeyo and geno for what she called ‘to believe’ in English, which more literally translated mean ‘agreeing with’ and ‘hoping in’. The English word ‘believe’ has a long history. Older senses of the words, which evolved into the modern ‘believe’, were indeed also ‘to belove’, ‘to hold dear’, ‘to enter into a relationship with’ and to ‘put faith in’ (Smith, in Good 1994: 10). It thus does not seem inappropriate that Alexine chose to translate it into Dhopadhola as ‘agreeing’ and ‘hoping’. With her nightly exclamations she was not questioning the empirical existence of juogi. Neither was she insisting on God’s omnipotence. She knew that juogi as well as God existed and that one could choose to trust and develop a relationship with one or the other. She had chosen God, and she hoped that God would then protect her from juogi. She did not trust, agree with or want to have a relationship with juogi and refused to accept their interference in her life (Mogensen 2002a: 427–28). Her rejection of juogi was a consequence of being saved, that is, belonging to the Christian movement of spiritual renewal with its roots in the East African revival. The Balokole Movement, as the revival movement is called in Uganda, originated in the 1930s as an offshoot of the Anglican Church Missionary Society and is now common all over Uganda. Her rejection of juogi did, however, not only allow her to become part of a religious community. It was also a rejection of a whole range of ritual acts and celebrations within the family and clan. Her choice of God and of the Balokole Movement may thus be seen, not only as a religious choice but also as a consequence of the social dilemmas of her life. She and her children and grandchildren had lost touch with those who were responsible for performing such rituals for them, and they had a tense relationship with the ones whom they were trying to make responsible for their lives (their matrilateral relatives). Alexine was not questioning the existence of juogi and of the importance of having a family, but she felt they had failed her, and she had decided to put her faith in her relationship with God and with other Balokole. Alexine did not question the existence of a virus in her daughter’s blood either, but she had not been prepared to believe, that is, to agree and put her faith in the virus. She did not want to allow it to kill her daughter. She had not wanted to believe her child was dying. Her care and concern for her daughter had made her speak carefully 68

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for as long as possible, by not speaking the name of the disease with no hope and not believing in it, that is, relating it to her daughter’s death. But she had done so for too long, and she had missed the chance to be there and care for her daughter when it was no longer possible to hope that she was not dying. At this stage in the epidemic, people who cared about a person living with HIV could do only two things: help the person keep hope alive for as long as possible and be there to care for that person in the end. The many nongovernmental organisations providing support to AIDS patients have also tried to do exactly this: strengthening people’s hope through a discourse of positive living and providing some, though limited, treatment of opportunistic infections and material contributions such as food and school fees for children. One does not, however, need to convert to the discourse of positive living and be outspoken about one’s new identity as HIV positive in order to stay alive. One can also, like Nelly and her relatives, try simply to remain hopeful by talking carefully. The most important issue in Nelly’s life was her ability to maintain hope. Nelly neither disclosed nor hid her HIV status. Nelly and her relatives ‘knew’, but by not talking openly about HIV, they could avoid ‘believing’ in it, that is, avoid having to develop a relationship to a disease that one could do nothing about. They could put their faith in other things. They could hold on to their hope. Other people who were not as close to Nelly spoke openly of her disease. But as they say in Uganda, When you care, you speak carefully (Whyte 1997: 219).

Uganda 2004: Speaking Out to Survive In 1997 Bond and Vincent suggested that we could identify three paradigms of AIDS research in the first decade of the epidemic. First the ‘biomedical paradigm’, during which target populations were identified, sought out, referred to as risk groups and blamed for the behaviour leading to their infection (see Gausset 2001 for a discussion of this period). This phase was followed by a ‘community paradigm’ where the anthropologist turned into a social worker and started focusing on caring rather than curing orphans, widows and widowers, and households (e.g. Ankrah 1993; Catell 1992; Hunter 1990; Kaleeba 1997, 2004; Seidel 1993; Taylor et al. 1996) – or, as mentioned above, on learning to cope with an approaching death and on 69

DHanne O. Mogensen mourning relatives. Rather than seeking out and blaming the victim, this phase tended to focus on the social dislocation caused by the sickness and death of the victim (Bond and Vincent 1997: 91). Alongside the ‘community paradigm’, a third paradigm in research on HIV/ AIDS developed as medical and social scientists adopted a more critical tone in the course of the 1990s. It explored the epidemic of economic, social and political responses to AIDS and tried to restore the historical and social context shaping the spread of the disease (Bond and Vincent 1997: 93). Discussions of this paradigm are found in Farmer (1992), Packard and Epstein (1991) and Schopf (1991, 2004). Since Bond and Vincent outlined these three paradigms in approaches to AIDS, antiretroviral treatment has entered the scene and there has been, therefore, a return to the biomedical paradigm, focused on curing and on seeking out and blaming target groups. At the same time, antiretroviral drugs have also given renewed strength to the critical paradigm that scrutinises economic, social and political responses, not only to the epidemic, but now also to the treatment. By the turn of the century, whether it would be affordable and feasible to start treating people in the developing world was still being debated. The cost of the drug was but one of a series of problems put forward. Others included an insufficient health service infrastructure and possible developments of resistance to the drugs. Arguments were made that treating people in the developing world would never be cost-effective and that the money spent on drugs could benefit the poor much better if spent differently. Fears were raised that if priority were given to treatment, it would be at the cost of prevention. Furthermore, it was feared that many people living for extended periods on antiretroviral drugs would no longer have any incentives to disclose their disease, which again was likely to contribute further to its spread. Activists and academics (e.g. Farmer 2001) claimed, however, that if we think globally, money is not in short supply. Meanwhile drugs started flowing by formal and informal channels to resource-poor countries. In the late 1990s antiretroviral drugs started becoming available in Uganda at extremely high costs. At the turn of the century, prices started falling and they continued doing so at an increasingly high rate. But people were also increasingly confronted with the reality of unequal access (Whyte et al. 2004: 15). Drugs were brought into the country through research programmes funded by donors and were 70

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provided free. They were also available at fee-for-services centres that started appearing in the major cities, and from private practitioners selling them in more discrete manners and under less surveillance. People in need could get them through relatives and friends who were able to obtain the drugs at an affordable price elsewhere in the world. Radio programmes informed people about the drugs, that they would have to be taken for life and were not a cure. Government health centres started offering ‘prevention of mother-to-child treatment’, and in the villages all pregnant mothers suddenly knew about ‘this new drug’. Between 2002 and 2004 people were becoming well informed about antiretroviral treatment, even in rural areas. However, they also knew that, as for most things, one needs money or connections, and they were not likely to benefit from this medical advance any time in the near future. This realisation resulted in new reasons to speak out about one’s HIV status. It also presented new kinds of vulnerabilities for those who did so, as Alexine’s account of her second daugher’s death illustrates. When the second of Alexine’s daughters fell sick around 2002, antiretroviral drugs were available, yet inaccessible to the vast majority of the population. In 2004 she died. A few months later I sat in the dark restaurant of the hotel in the provincial town near the village where Alexine and I had stayed together a few years earlier. She told me in a composed manner about her last months with Kate: ‘This time it was not as bad as last time. Not like with Nelly,’ she repeatedly stated. I offered her something to eat, but she preferred to fast and hence be near God. Protection from juogi was still necessary: ‘It was not so hard because I was there to take care of her. With Nelly there was nothing I could do and not even any money to go and see her. But with Kate, I spent several months with her before she died. I was sad of course that another one of my daughters were to die from AIDS, but at least I did what I could.’ Then followed a long account of her daughter’s suffering: her advanced tuberculosis, her mouth that was full of sores, and the never-ending stomach pain that killed her in the end. ‘But she was really fighting and she was trying to make plans with me. She tried to get up and go to church, and she said that when she would get better she would go to Mawinde with me and open a small business of selling fish or tomatoes on the market. And she did get stronger. Slowly. Slowly. She started going to the toilet by herself and we went to TASO [The AIDS Support 71

DHanne O. Mogensen Organisation] for regular controls. We also had her blood checked regularly, and we were told that there were very few cells left and that her blood could no longer resist much disease.’ Their fight for her life was given further strength by their awareness of antiretroviral drugs. The falling prices and the increasing talk about how they would soon be available for free brought hope: ‘We were thinking that maybe she would make it, but when we heard that the blood cells were getting fewer, then we were again getting very worried. They kept telling us about this new medicine, that it was very expensive, and that more and more medicine would be coming. But we had no money to start it while waiting for the free one. We said to ourselves that if one day we would get money we would start buying it. But we hardly had enough to feed ourselves. You know in Kampala you have to buy every little thing you eat, but if we had gone to the village there would be no chance of getting the free medicine once it got there.’ Alexine confirmed what I already knew, that Kate had been tested for HIV and had decided to reveal her status to a few members of the family. She had informed two of the maternal uncles, with whom she had spent much of her childhood and youth and who had continued to provide shelter and economic support to her and her two sons in times of need. She hoped that informing them would assure the continuation of this support. She assumed her uncles would tell her mother, which they did. Kate was, however, extremely careful not to let friends, sisters and other relatives know. They eventually understood, as they did with Nelly, but Kate never told them explicitly of her diagnosis. Soon after her disclosure to her uncles, their support started diminishing and a few months later she was told she could no longer stay in their homes. A direct connection with her sickness was never made in front of Kate. To me, however, they admitted that her openness had changed everything. ‘Of course we knew already,’ one of them said, ‘but now that she has tested and told us the result we are made to consider options we cannot afford to consider. We can no longer just help in the same way as before.’ In a patrilineal society like the Jop’Adhola, matrilateral relatives very often play an important role, and people talk of having a closer emotional relationship to relatives on their mother’s side than on their father’s side. However, obligations towards matrilateral relatives are not as clearly defined as obligations within the patriclan. Hence Alexine’s brothers could 72

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be expected to give some support to their sister and all her children and grandchildren, but they were not obliged to the same extent as they were towards patrilineal relatives. Furthermore, there was more room for the negotiation of responsibilities. When the sickness got serious, Kate moved in with one of her younger sisters who was working as a maid in the outskirts of Kampala. Her mother joined them to care for her. ‘But I don’t blame my brothers,’ Alexine said, ‘the medicine is very expensive and they have so many people coming to ask them for help. They said they would look for money and let us know if they found any. But we never heard from them again. I think they feared coming to see us without money for the medicine. “They are annoyed with all my sickness,” Kate said several times. And then one night she died.’ Alexine talked openly about the disease of her daughter as being AIDS, or rather she talked about the medicine that could have kept her HIV positive daughter alive. ‘And you know, the problem is that she died bitter. In the end she was bitter. She kept hoping that money would come, that she would be among the lucky ones, but this hope made her die, feeling that nobody cared about her. Only that. Otherwise it was not a bad death. I was there to look after her until the end. And you know, even if the uncles were somehow annoyed that she told them she was HIV positive, then sometimes if people are annoyed in their heart, then it is actually because they are sad. I could see that they were sad. Sad and scared. Very sad that there was nothing they could do to help us.’ In the space between availability and accessibility of antiretroviral drugs, social and moral dilemmas flourish. In the ‘biomedical paradigm’ of curing (for those who can afford the drugs) and the ‘critical paradigm’ of promoting the drugs through as many channels as possible, one perspective is ignored: how struggles over limits of responsibility are manifested in the everyday life of those who have the disease. The advances in treatment with antiretroviral drugs brought a long awaited optimism that science is about to gain the upper hand against HIV. But alongside this optimism there was for a long time a renewed tendency to blame the victims – those who are sick as well as those who care for them – for being incompliant, uneducated and poor, and hence not qualifying for treatment. Alexine and her daughters remind us to consider not just the cure but also the care. In the promotion of the new cure, we must not forget to care for those who 73

DHanne O. Mogensen make immense sacrifices to get access to it, and those who can do nothing but imagine it – or who suffer from other people’s imagining about that what they wish they could do for them. The availability of the drugs started making people articulate their HIV status in the hope that this would prolong their lives. The result was new social and emotional complications for some of those who chose to be open. For almost two decades, NGOs and the Ugandan government have promoted openness and encouraged people to ‘come out as HIV positive,’ but with the new medicine a situation was created in which openness could exacerbate one’s suffering. A few years ago I argued that such stories called for a new critical paradigm that did not cover up human suffering in a discourse of cost effectiveness and sustainability, but which did not uncritically accept antiretroviral treatment either, because it is the only ‘human rights thing to do,’ without paying attention to the moral dilemmas and hardship brought about by this ‘human rights intervention.’ While it is an excellent idea to work towards a realisation of equal access to health, as says Paul Farmer (2001), it is not a bad idea either, I argued, to pause and look at the problems arising from the struggle to do so (Mogensen 2002b, 2002c, in press). The problem with this argument was, however, that there was no time to pause.

Uganda 2006: Returning to Normalcy? The billboards no longer show young people looking intimately at each other with condoms in their hands. Instead they talk of abstinence as the only sure protection against AIDS. Condoms are still for sale in every little corner shop and remain sufficiently available for children to get hold of one for their football now and then. But something has happened in Uganda. And it has happened fast. In 2004 there was talk about free antiretroviral treatment soon becoming available though nobody seemed to believe it seriously – or at least to believe that they would become available for anybody but those with the right connections. In the course of 2005, the first free drugs arrived; by 2006 thousands of people had been enrolled in programmes providing antiretroviral treatment for free. At Kampala’s main hospital patients are routinely checked for HIV when admitted. If found to be positive, they are referred to the infectious disease department for further testing to see if their immune status 74

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is low enough for them to qualify for antiretroviral treatment. Nongovernmental organisations, having provided social and emotional support and treatment of opportunistic infections for a decade, now add antiretroviral treatment to their services. Government hospitals have started receiving their first free doses of the drugs. Accounts of insufficient stock are still rare, though they are likely to grow as people become increasingly aware of the availability of the drugs at government units. The donors are primarily the Global Fund to Fight AIDS, Tuberculosis, and Malaria and the President’s Emergency Plan for AIDS Relief (PEPFAR), implemented by USAID. Billions of dollars have been put into the fight against AIDS through antiretroviral treatment, and in the case of PEPFAR, by combining treatment with a reduced focus on condoms as part of prevention efforts. Hence the changing messages on billboards – but also the very visible consequence of the flow of medicine: people are rising from their deathbed, and ‘these days we don’t talk about people as having AIDS but as “being on medication”’ a young man told me in May 2006. The gap between availability and accessibility is diminishing at an unforeseeable speed. Occasional concerns about donor dependency and reliability are voiced. Most of all, however, there is renewed optimism and many happy smiles from people who had been ready to die – or to let their relatives die. A woman who had started receiving antiretroviral drugs in 2005 talked with bitterness of having lost her husband and of other people’s jealousy of the life she had lived with him. ‘I would never tell them what he died from, and that I am also HIV positive,’ she said. ‘If I become open about it, they will just use it against me.’ Six months later, she showed no signs of this bitterness. ‘And you still haven’t told anybody?’ I asked. ‘No,’ she said. ‘But they know of course. They see that I go to collect drugs once a month. They see how my health has improved. But so many people are on drugs these days that nobody is bothered to talk about it.’1 The drugs have brought new ways of hiding the disease – and new ways of revealing it without having to say it. Or rather, the wide availability of drugs has given room for new forms of careful speech that transgress the dichotomy of hiding and disclosing. Alexine illustrates this with her account in 2006 of her third daughter’s life. ‘You know,’ Alexine said, interrupting herself, as we strolled down the road towards the market, ‘I am not all that concerned about 75

DHanne O. Mogensen Suzy.’ Alexine had been busy telling me about her plans to plant plantains and invest the surplus in a calf which one day would be the beginning of her own herd, so that she could become increasingly independent of her brothers. But then she changed the subject and started talking about the third of her adult daughters: ‘You know, these days people will just say: “This one is on medicine.” So I try to tell Suzy to go and have a test done. Maybe she will. I think she will. “This big malaria” people also call it. Yes, this big malaria. That is what it has become these days. I think she should go and test. Don’t you think that is a good idea?’ Suzy had been concerned about her own health since the death of her sisters. ‘It moves in a line,’ she had said to me on several occasions. ‘Once it has entered a family, it continues until it has finished them all.’ In 2006 her eighteen-month-old son had died. ‘But you know that is not how AIDS is transmitted,’ I had argued back then. ‘Of course I know that it is through sex and blood, but once misfortune has entered a family it is hard to get rid of it again.’ Two years later she added: ‘Kate was not very lucky. She died too fast. But do you think that anyone will pay brideprice for somebody on drugs?’ Suzy had recently moved in with a man in a village near her matrilateral relatives. She was mourning the loss of her son, but her concerns for the future dealt with the prospects of becoming properly married, and how – if it were to go that far – to continue accessing drugs if the man she was with would disappoint her and she would later have to move to a different place. Dilemmas have not disappeared. They have been altered. People are thinking in terms of how to return to normalcy, while slowly realising that they might never quite achieve it. But what is clear from the first year of widespread experience of antiretroviral treatment is that one can again – and even more so now – speak with care: say it with things other than words and hold on to hope for a continuation of life.

Conclusion ‘We know that risk of acquiring HIV does not depend on knowledge of how the virus is transmitted, but rather on the freedom to make choices,’ Farmer writes (2001: xxv). I would add, that the risk of being rejected due to one’s sero-status does not only depend on other people’s knowledge about the disease and their fear of contagion, 76

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but also on people’s possibility to assist those who are infected in getting on with their lives. As Kleinman observes, ‘We make choices as a process of being engaged in social life. … The choices are made in the actions themselves or they are made by the defining limits of what we can do, by our social circumstance, by the context in which we find ourselves constrained’ (Kleinman, in Honkasalo and Lindquist 1997: 120). The ‘choices’ to disclose or hide, to reject or assist, are thus not free choices. They are social processes framed not only by the disease or the drugs themselves but also by the possibilities to act. These possibilities have changed immensely in the past few years. Whether and how one talks about being HIV positive is inextricably linked to the need to be recognised as somebody who matters in life and the desire to continue living even when suffering from a deadly disease. The above discussion is based on the lives of marginalised Ugandan women, but the point is of general importance. With antiretroviral treatment, possibilities as well as challenges are changing and so are the ways in which disclosure is played out in social life. Disclosure is never an absolute or exclusive process.

Notes In 1995–96 I did one year of fieldwork in eastern Uganda on health care seeking behaviour and mother’s interpretation of their children’s sickness. In the years that followed I returned regularly for shorter follow-up studies. In 2001 the Danish American Fulbright Commission financed a research project on women’s narratives about their experience with AIDS during which my awareness of the increasing importance of antiretroviral treatment was initially raised. In 2004 The Danish Crown Prince Frederik’s Fund financed a study focusing on new dilemmas of antitretroviral treatment, and in late 2005 I furthermore commenced a study together with a team of Ugandan and Danish researchers on life on antiretroviral treatment, financed by the Danish Development Agency (Danida) for which data are still being collected. Together the various studies have made it possible to follow Ugandan’s experience with the epidemic and the challenges brought by it for a period of ten years. I gratefully acknowledge the sources financing my research over the years, the many informants in Uganda, who have given of their time and trust, and my colleagues at Child Health and Development Centre, Makerere University, Uganda and University of Copenhagen and Aarhus University in Denmark. 1. This case is from the study presently being carried out in collaboration with colleagues at Makerere University. 77

DHanne O. Mogensen Bibliography Allen, T. and S. Heald. 2004. ‘HIV/AIDS Policy in Africa: What Has Worked in Uganda and What Has Failed in Botswana?’ Journal of International Development 16: 1141–54. Ankrah, M. E. 1993. ‘The Impact of HIV/AIDS on the Family and Other Significant Relationships: The African Clan Revisited’, AIDS Care 5(1): 5–22. Bond, G. and J. Vincent. 1997. ‘AIDS in Uganda: The first Decade’, AIDS in Africa and the Carribean, Colorado and Oxford: Westview Press, pp. 85–97. Bourdieu, P. 1990. The Logic of Practice. Cambridge: Polity Press. Catell, M. G. 1992. ‘Praise the Lord and Say No to Men: Older Women Empowering Themselves in Samia, Kenya’, Journal of Cross-Cultural Gerontology 7(4): 307–30. Evans-Pritchard, E. E. 1940. The Nuer. Oxford: Oxford University Press. Farmer, P. 1992. AIDS and Accusation. Haiti and the Geography of Blame. Berkeley: California University Press. ———. 2001 [1999]. ‘Preface to the Paperback Edition’, in Infections and Inequalities. The Modern Plagues. Berkeley and Los Angeles: Unviversity of California Press, pp. xi–xl. Gausset, Q. 2001. ‘AIDS and Cultural Practices in Africa: The Case of the Tonga (Zambia)’, Social Science and Medicine 52: 509–18. Good, B. 1994. Medicine, Rationality and Experience. An Anthropological Perspective. Cambridge: Cambridge University Press. Honkasalo, M. L. and J. Lindquist. 1997. ‘An Interview with Arthur Kleinman’, Ethnos 62(3–4): 107–26. Hunter, S. 1990. ‘Orphans as a Window on the AIDS Epidemic in Sub-Saharan Africa: Initial Results and Implications of a Study in Uganda’, Social Science and Medicine 31(6): 681–90. Håkansson, N. T. 1994. ‘The Detachability of Women: Gender and Kinship in Processes of Socioeconomic Change among the Gusii of Kenya’, American Ethnologist 21(3): 516–38. Kaleeba, N. et al. 1997. ‘Participatory Evaluation of Counselling, Medical and Social Services of the AIDS Support Organisation (TASO) in Uganda’, AIDS Care 9(1): 13–26. ———. 2004. ‘Excerpt from We Miss You All: AIDS in the Family’, in E. Kalipeni et al. (eds). HIV and AIDS in Africa. Beyond Epidemiology. Oxford: Blackwell Publishing, pp. 259–78. Kleinman, A. 1995. Writing at the Margin. Discourse between Anthropology and Medicine. Berkeley: University of California Press. Mogensen, H. O. 2000. ‘“False Teeth” and Real Suffering: The Social Course of “Germectomy” in Eastern Uganda’, Culture Medicine and Psychiatry 24: 331–51. ———. 2002a. ‘The Resilience of Juok: Confronting Suffering in Eastern Uganda’, Africa 72: 420–36.

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———. 2002b. Forced Secrecy and Increased Poverty: Imagining Antiretroviral Treatment in Uganda. Paper presented at ‘African in an Age of Globalization’, Columbia University, New York, April 2002. ———. 2002c. Exploring the Space between Availability and Accessibility. Antiretroviral Treatment and the Ugandan Family. Paper presented at ‘The African Studies Association 45th Annual Meeting’, Washington DC, December 2002. ———. in press. Surviving AIDS? The Uncertainty of Antiretroviral Treatment, in C. Bawa Yamba and L. Haram (eds.), Dealing with Uncertainty and Risk in Contemporary African Lives. Uppsala: Nordic Africa Institute. Packard, R. M. and P. Epstein. 1991. ‘Epidemiologists, Social Scientists, and the Structure of Medical Research on AIDS in Africa’, Social Science and Medicine 33(7): 771–94. Schoept, B.G. 2004. ‘AIDS, History, and Struggles over Meaning’, in E. Kalipeni et al. (eds), HIV and AIDS in Africa. Beyond Epidemiology. Oxford: Blackwell Publishing, pp. 15–28. Seidel, G. 1993. ‘The Competing Discourses of HIV/AIDS in Sub-Saharan Africa: Discourses of Rights and Empowerment vs. Discourses of Control and Exclusion’, Social Science and Medicine 36(3): 175–94. Taylor, L. et al. 1996. ‘Informal Care for Illness in Rural Southwest Uganda: The Central Role that Women Play’, Health Transition Review 6: 49–56. Whyte, S. 1997. Questioning Misfortune. The Pragmatics of Uncertainty in Eastern Uganda. Cambridge: Cambridge University Press. Whyte, S. R. et al. 2004. ‘Treating AIDS: Dilemmas of Unequal Access in Uganda’, Sahara. Journal of Social Aspects of HIV/AIDS Research Alliance 1(1): 14–26.

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DChapter 4 Health Workers Entangled: Confidentiality and Certification Susan R. Whyte, Michael A. Whyte, David Kyaddondo

It was distribution day at Ekataali hospital in Eastern Uganda. Every other Thursday the NGO running the AIDS project gave out material support to ‘clients’, people who had tested HIV positive at the AIDS Information Centre (AIC) in the hospital. On this particular Thursday in 2002, one of the counsellors at the centre, who was also a midwife at the hospital, had invited us to come along and see how the flour, sugar and soap were given out. As is so often the case, the activities got off to a slow start. While the counsellor was off trying to find the storekeeper who had the key, Michael made use of the waiting time. We had been following the statistics on Voluntary Counselling and Testing (VCT) at the hospital, and he sat for half an hour in the AIC office copying out the monthly numbers. The office where people are counselled is near the laboratory and one of the main entrances of the hospital. It is a busy area with people passing by to the out-patient clinic and the lab, affording little privacy for those waiting for VCT. From time to time someone opened the door of the office, looking surprised to see Michael at the desk instead of the counsellor. One young man asked Michael to help him ‘know the results of the examination’. When told that he would have to wait for the counsellor, he returned shortly with a friend who asked again in English, only to be disappointed once more. A few minutes later, a hospital employee popped in for his 80

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results. He was clearly irritated when told that he could not simply rummage through the papers on the counsellor’s desk to find his lab report. Out in the courtyard behind the hospital, caretakers were washing clothes for their patients on the wards. They watched, and we watched, as people gathered at the entrance to the storeroom. Those who were clients could be identified by the plastic sacks they were clutching, brought to carry their rations of millet and soya flour. They waited patiently, hardly talking beyond quiet greetings. One man, whom we had known for many years, had come to collect supplies for the family of a son who had died. Some months earlier, we had visited his home to mourn; today he almost ignored us. Hospital staff collected on the veranda. The counsellor was there with an assistant, the porters had come to lug the gunny sacks and boxes of soap out of the store, and at last the storekeeper himself arrived with the key. Other staff members were hanging about, curious or just passing time chatting to one another. The leader of the NGO responsible for the project was there with his deputy, a woman in charge of training the village counsellors (VCs). The VCs themselves stood a bit apart, holding their record books with the names of their particular clients. The NGO leader directed operations, rather officiously overseeing the admission of clients to the area near the weighing scales, where sacks were filled. The name of each entering client was checked against the list held by the appropriate VC and once more against a revised and approved list. It became clear that some of those collecting the rations were not clients themselves, but caretakers of sick people or of the orphans of clients who had died, or VCs themselves taking delivery on behalf of a client too ill to come. It was the VC who confirmed the entitlement in these cases, sometimes giving a brief explanation to the NGO leader. The NGO leader and his deputy aggressively interviewed the VCs about their activities and clients. They checked their case records and complained about record-keeping standards, missing entries and insufficient documentation of home visits to clients. Some VCs had forgotten to bring their client lists. They hurriedly recreated them from the master list they borrowed from the midwife/counsellor and were sharply corrected by the NGO leader: they must not see the names of clients in other villages; anonymity must be maintained. 81

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo The Entanglements of Health Workers The situation we observed that day at Ekataali hospital exemplifies a social and moral field created by the response to AIDS in Uganda. Government policy, donor support and the activities of a whole range of NGOs have encouraged many people to come forward for testing. Voluntary counselling and testing is offered on a premise of confidentiality, an ethical commitment strongly emphasised by externally funded programmes. Material, medical, social and psychological support is offered to those who test positive. But accessing that support invariably requires making one’s sero-status known to others, thus breaking the secrecy that surrounds test results. In this chapter, we wish to explore the positions of health workers in this field and the dilemmas they face as they mediate between clients, government health facilities and the support available from various other agencies. We focus on contradictions between the declared committment to confidentiality on the one hand, and on the other, the need to certify people as HIV positive and therefore entitled to support and treatment. Our discussion is grounded in locality, in a world where clinics are embedded in other social networks. Here social life is played out in front of friends and relatives, neighbours and colleagues. As our initial vignette shows, Ekataali Hospital is both a clinical and a public social scene and ‘client anonymity’ is not possible to maintain. Health workers treat patients who are friends (or friends of friends) and relatives (or neighbours of relatives). The dense social networks that characterise rural life are based, we argue, not so much on confidentiality as on discretion. We argue that health workers’ moral concerns for their clients are often at odds with the ethical requirements of discretion and secrecy. Understanding these predicaments requires an approach that is more ethnographic than philosophical, seeing health workers at home in local moral worlds and specific clinical realities (Kleinman 1995: 42–46; Das 1999: 100). The field that we are exploring is dynamic and much has changed since that distribution day in 2002. Antiretroviral treatment is increasingly available to rural as well as urban Ugandans. Programmes for the prevention of mother-to-child transmission (PMTCT) have become part of antenatal care in many health units. Hospitals have adopted the principle of routine counselling and testing (RCT), that 82

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is, testing of patients as part of routine investigations. Some facilities are offering VCT at outreach stations and in people’s homes. As testing becomes more common, the V of VCT, which emphasised the voluntary decision to go for a test, is being replaced by H. The label ‘HIV counselling and testing’ (HCT) marks a step toward mainstream testing as a standard part of healthcare services. These developments are bringing issues of confidentiality into even sharper focus. And since these programmes are based in health facilities, health workers must find a way between ensuring the right to privacy, certifying HIV positive people for support, and helping them to access it. The three of us, together with colleagues in Denmark and Uganda, are following these changes, hoping to cast light on the predicaments of health workers under the national and international response to AIDS.1 Uganda’s government health workers are the frontline civil servants who interface with people seeking treatment at health units all over the country. They take the brunt of the criticism for the poor functioning of the national health system. At the same time they are courted as gatekeepers and key resource people in the constant struggle with sickness. In rural areas where most people live, physicians are few; health services are run by clinical officers, midwives, nurses, nursing aides and other untrained staff. Understaffing is common; in the eastern districts where we work, less than half of the established posts were filled in 2005. Salaries are insufficient, not least because every health worker is expected to help many members of his or her extended family. Rural health units often include staff housing, so health workers often live at their workplaces. In any case they live near their place of work. They are thus part of the local community around the health unit (Kyaddondo and Whyte 2003). Indeed, the counsellor/midwife at Ekataali Hospital was the elected leader of the local council for the area. Health workers attend church or mosque, are in debt to local shopkeepers, borrow land to cultivate and run small businesses to supplement their salaries. Their staff houses are often full of relatives and neighbours from their home villages, who stop in when they come for treatment, further burdening the household food budget. In this situation, the fact that Uganda’s health sector is heavily dependent on external funding takes on particular significance. Donors contribute to a wide variety of special programmes involving 83

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo extra activities. NGOs, funded from abroad and staffed by Ugandans, provide services and promote grassroots development. Since the advent of the AIDS epidemic, national policy has encouraged interventions by all manner of outside agencies: international organisations, bilateral donors and NGOs (Parkhurst and Lush 2004). With its open and progressive policy, Uganda has received so much attention from donors that there are macro effects on the national economy (De Waal 2006: 103–5). As emphasis widened from prevention of HIV transmission to identification, support and treatment of people living with HIV and AIDS, government health workers came to play a central role in AIDS work. Donor programmes intertwine with the government health system in several ways. PMTCT programmes, for example, must be integrated in antenatal clinics. In Tororo District, eight different externally funded agencies were supporting PMTCT in 2004. Most HIV testing was done through AIDS Information Centre, an NGO. But that NGO worked through government health units, where staff is trained to offer counselling and testing. Midwives, nurses, nursing aides and even dental technicians talk to people who want to test, tell them their results and do the paperwork for registers, forms and identity cards. In some cases, further counselling is done by village volunteers or other clients. But the first counselling and certification is usually the task of government health workers. Moreover, many programmes offer medical support for clients as in-patients or outpatients. When they fall sick, they are supposed to get free and adequate treatment from government units. Those who are certified are entitled to medicines for which ordinary patients might have to pay or search elsewhere. Since mid-2005, government hospitals and the highest level health units (Health Centre 4) offer ART to those in need. For health workers, these externally funded programmes have three practical consequences. First, they impose new tasks in the health unit, without providing new staff. Even counselling is done by health workers, not specialised counsellors. Second, they sometimes offer allowances, especially for the outreach work which is quite popular with donors. Third, they offer opportunities to attend workshops, seminars and training sessions, which provide new knowledge and the hope of promotion as well as allowances. Beyond these considerations, the external resources present stimulation, new hori84

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zons, new discourses – a sense of hope and involvement, for some at least. Through these activities new ideals are communicated about how health workers should relate to patients – usually referred to as ‘clients’ in the world of HIV/AIDS programmes run by NGOs. Health units have patients and programmes have clients. But the articulation of externally funded programmes with government health services means that members of the health unit staff deal with clients in connection with PMTCT, VCT, medical treatment of HIV positive people enrolled in programmes, and sometimes in connection with other activities. On that Thursday at Ekataali Hospital, the storekeeper, the porters who weighed out rations of flour and the midwife/counsellor were all mobilised to help in the distribution of material support to clients of an NGO programme. The extent to which health workers deal with people categorically as patients or clients varies. As we shall see, some are also neighbours, relatives or even colleagues. Others are individuals and families they get to know better in the course of repeated interactions. Still others remain clients with whom interaction is businesslike and limited.

Confidentiality and HIV Testing The requirement to maintain confidentiality is an old and fundamental principle in biomedical ethics, often traced back to the Hippocratic Oath. When a patient allows a doctor to gain information about her, the doctor is obliged not to disclose this knowledge to anyone else without the patient’s permission. The relationship between patient and practitioner is assumed to build on confidence and trust such that secrets may be shared and privacy will be respected (Beauchamp and Childress 2001: 30312). Confidentiality becomes more of an issue the more discrediting the information might prove to be. It is an absolutely central theme in the response to HIV/AIDS. Because the disease is so feared and the consequences of disclosure are potentially so dire, silence and secrecy are enjoined. Without the promise of secrecy, people will not accept testing and counselling. This assumption is at the heart of ‘AIDS exceptionalism’ – the notion that AIDS is unlike other diseases and must be handled with greater guarantees for individual privacy and autonomy (De Cock et al. 1998; 2002). But because HIV is communicable both to sexual partners and to those providing care, information should be shared 85

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo so that others can take precautions. How should the interests of the individual in maintaining privacy balance the public health interests in protecting others, including health workers, from infection? This dilemma has been ably described by Fombad (2001) as the crisis of confidentiality in relation to HIV/AIDS in Botswana and his description is relevant to many other African countries. Most of the admittedly scant writing about confidentiality and HIV in Africa addresses this contradiction between maintaining secrecy and preventing the spread of disease. Fombad, writing from a legal and ethical point of view in Botswana where measures requiring disclosure are being introduced, is concerned that the notion of confidentiality should be maintained, even though exceptions must be made in well-defined circumstances (Fombad 2001: 654). Others are concerned with local people’s perceptions of the balance between confidentiality and disclosure. Some churches require that couples test for HIV and disclose the results to a church authority before a wedding can be performed so as not to bless a relationship in which one person is likely to infect another with the deadly virus. This infringes confidentiality not only in relation to clerics but also to the families of the couple if they have been involved in marriage negotiations (Luginaah et al. 2005). Heald (in press) reports that confidentiality was seen as a danger to public health by many of the Kuria people with whom she worked in southwestern Kenya. Most of her informants thought that HIV testing should be mandatory and that results should be made public so that people could protect themselves from those who were infected and who might even spread the disease intentionally. As one man pointedly said, the ‘laws’ (sharia) of doctors, that is the requirements of secrecy, were killing people. From southwest Uganda, Pool and colleagues (2001) present the concerns of pregnant women that health workers will not maintain secrecy. In focus group discussions about testing in relation to prevention of mother-to-child transmission, ambivalence centred on confidentiality. Many feared that midwives who learned of a woman’s positive status would reveal it to others and that information might even get back to the husband. This was seen as most likely when a midwife had multiplex relations with a mother: a traditional birth attendant was also a neighbour and maybe even a relative, and thus might share information with other neighbours and kin. By the same logic, health staff members at rural local units were thought 86

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less likely to maintain confidentiality than those at larger, urban, more anonymous facilities. Interestingly, this same concern appears among HIV positive patients at rural health facilities in the southeastern United States. Some reported disturbing breaches of confidence allowing information on their sero-status to circulate in small rural settings where health workers were also community members (Whetten-Goldstein et al. 2001). So far scholars do not seem to have considered the viewpoints of health workers themselves and the dilemmas they might encounter in regard to confidentiality and HIV, particularly in rural areas. A notable exception is Gill Seidel, who analyses the policy shift on HIV confidentiality in Kwazulu-Natal in 1995. She argues that [t]he emphasis of the new policy on the individual and on the practice of maintaining confidentiality virtually at all costs (‘Your status is your secret’) are seen as highly problematic by a number of health professionals, mainly from former Kwazulu, with experience of rural areas, and, in other cases, from Natal. (Seidel 1996: 422)

Seidel’s focus is the policy debate and its implications – in particular the shared concerns of activists and health workers that too much professional secrecy will hamper efforts to further develop community and family support. The voices of health workers are important for Seidel as they are for our work. However our focus is on treatment and interaction rather than participation in policy debate.

The Obligation to Secrecy in Ugandan Health Care Ugandan health professionals, like their colleagues elsewhere, are bound by a code of ethics that includes the principle of confidentiality: ‘A health worker shall respect the confidentiality of information relating to a patient and his or her family; such information shall not be disclosed to anyone without the patient’s or appropriate guardian’s consent except where it is in the best interest of the patient’ (Health Service Commission 2002: 2). The concept of confidentiality overlaps with other notions: secrecy, privacy, discretion, anonymity and the patient’s right to autonomy. For our purposes here, we need not analytically distinguish among this family of ideas; however, we note that in many Ugandan languages, confidentiality is translated by the 87

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo word that usually means ‘secrecy’ (e.g. obuhyama in Lunyole, mukyama in Luganda).2 Although confidentiality is supposed to inform relations with all patients, it has become a significant and sensitive issue particularly in relation to HIV/AIDS. Some years ago, before our Tororo Community Health (TORCH) began to undertake studies of the response to AIDS, we were holding a workshop with the district health team and local leaders to discuss results of some of our earlier research on other topics. One of our younger colleagues reported on her study of patient communication as an element of quality of care. She mentioned that confidentiality could not be observed when other patients were crowding into small outpatient consultation rooms. One of the local administrative chiefs remarked that confidentiality was a new thing anyhow. ‘Who ever heard of confidentiality before this sickness of AIDS?’ Indeed AIDS has created awareness on this issue. The importance of confidentiality has been a keystone in the ideology of counselling and testing in Uganda. The guidelines and information material for both health workers and clients state this unequivocally. An informational brochure, ‘Knowledge Is Power … Hold on to It’, which is widely distributed by AIC, presents a set of questions and answers, including: ‘Will other people know my test result?’ ‘NO. Unless you have consented. Whatever is discussed remains confidential between you and the counsellor. The Counsellors and laboratory technicians are trained to keep whatever is discussed confidential’ (AIC n.d.). Once Susan (Whyte) brought a friend, Musani, to the health unit for testing. While we were waiting outside the AIC office, another friend, a health worker, who knew us both came along. Aware that Musani did not want anyone to know he had been tested, Susan later mentioned to the health worker that he should forget having seen them there. The health worker responded immediately, ‘Even if I saw you bringing my wife for testing, I cannot take notice or say anything’. Ironically, a year later, that very health worker’s wife fell sick, and he thought she should have an HIV test. ‘But she refuses to be tested here at the hospital’, he said. ‘Everyone knows her.’ He sympathised with her wish to be tested elsewhere, and she was tested and started treatment in a town 40 kilometres distant. The keen observation of confidentiality required by donors and NGOs necessitates elaborate measures of secrecy in record keeping. 88

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The NGO leader who scolded village counsellors for looking at lists of clients from other villages at the Ekataali food distribution was explicitly performing anonymity protocol (perhaps for our benefit). At the AIC office where people come for VCT, the procedures are cumbersome. Clients are given an identification number and registered in a counter book. In columns across two facing pages are listed the date, the person’s identification number, test result, sex, occupation, education, religion, village and mother’s name – but not the individual’s own name. These counter books are almost sacred objects. They hold information about hundreds of clients. Well thumbed and economically used, every line and every page are filled. In one column only, that for test results, the uniform blue ballpoint is occasionally broken by words in another colour. Positive test results are noted in red: REACTIVE. In addition to this register, another counter book lists identification numbers and clients’ own names, but without their test results. Each client who tests is given a pink card to keep; it has no name written on it, only the test date and a number. When clients return for treatment, or if they want referral to an NGO giving material support, they must show the pink card to the counsellor who checks in the counter book to see if the test was positive. The code phrase in such cases, ‘for continuing support’, indicates a positive test and thereby the right to join an NGO for positive clients or to receive such material support as may be offered. The elaborate protection of the identities and results of those who test is at odds with the public nature of the waiting area outside the AIC office. Anyone passing by can see who is sitting on the benches, as Susan experienced. Also, since the counsellors have to attend to their regular duties as hospital staff, it is often necessary for clients to go looking for them in the wards and clinics. At one hospital, where the popular counsellor is also a dental technician, it is not uncommon to find clients waiting at the dental clinic while he finishes pulling a tooth, after which he accompanies his client to the AIC office. The busy corridors and waiting rooms of the hospital are very public places, and waiting for the AIC counsellor is obvious. At the office itself, people stick their heads in or enter to talk to the counsellor, as Michael found that Thursday morning while we waited for the distribution to begin. Anonymity for those who decide to test is thus difficult to maintain in practice. Only those who can afford to travel to a distant testing centre can be assured of it.3 89

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo A study of home-based counselling and testing in a survey context (Yoder et al. 2006) found that the vast majority of people were willing to be tested and to receive their results at home. One reason they gave for their willingness was that they were selected as part of a survey; they did not have to explain why they tested, whereas people going to test at a health facility would be seen by others who might wonder why they thought they needed to test. In other words, the lack of anonymity about testing was not an issue. Moreover, those who came to do the testing and counselling were outsiders who did not know the tested individuals personally, as did health workers at the local facility. They trusted that the strangers would keep their results confidential, and most declared that they themselves would keep the secret as well, not sharing their results with anyone.

Certifying Positive People for Support The numbers of clients for voluntary counselling and testing have gone up steeply in Uganda after a fairly slow start. At first there seemed little reason to test; uncertainty was preferable to an assurance of death (Whyte 1997: 216). But as more and more programmes began to provide benefits for positive people and their families and ART became more accessible, a positive test result became an entitlement. AIC reported a 27 per cent increase in clients for testing from 2004 to 2005 (AIC 2006). In two districts of eastern Uganda, we found that the boom in VCT was related to projects offering some kind of support to people who tested positive. At Busolwe Hospital, attendance for VCT shot up when World Vision began to provide medicines and other kinds of material support for patients with opportunistic infections. Discussions with counsellors at other health units offering VCT made it clear that health workers were sending those who tested positive ‘for continuing support’ from whichever NGO was operating in their catchment area. In Busia district, TASO Tororo held monthly outreach clinics at which they provided co-trimoxazole to prevent infections and rations of foodstuffs to members. Another NGO, Friends of Christ Revival (FOCREV), offered help with school fees as well as material support to families of people living with HIV/ AIDS. Health workers doing testing at Lumino, Masafu and Busia government health centres told how they explained about support available from NGOs as a routine part of post test counselling. One 90

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clinical officer at Busia complained about the complications of paperwork with so many different agencies. At his unit, test kits were provided from two different programmes. But TASO would only accept referrals from the AIC programme, certified with the appropriate sticker from the AIC test kit. The availability of material support provides a motivation for people to test and some modicum of comfort for those who are positive. In fact, health workers told of occasional clients who wanted a positive result in order to qualify for support. A nurse from one NGO programme, chatting with Ugandan colleagues on an occasion when Susan was present, told a whole cycle of stories about clever clients who were collecting food and medicine from more than one programme or who had falsely obtained cards showing they were positive. She claimed to have discovered someone who had bought a positive test result from a lab technician for 10,000 shillings. Such stories do not necessarily reflect common practice, but they do underline the certification and entitlement aspect of HIV testing and counselling. Those who need material support cannot easily keep their positive status secret. Like the clients at Ekataali Hospital, they must line up to receive their rations. At the hospital, they must show their cards in order to get the free medicines provided by NGOs. Those who can afford to go to private clinics, who do not need the sacks of soya flour and bars of soap and free medicines, can keep their positive status secret for a while at least (Whyte et al. 2004). Poor people must be open in order to receive help. In such a situation, anonymity becomes moot, since the exercise of any entitlement is almost invariably public. There is no help for anonymous clients. Still there are those who would rather go without the help than let everyone see what the test has shown.

Referral for ARV Treatment Like entitlements to material support, referral for further treatment is about taking action to obtain a benefit. It may also necessitate giving up anonymity, and it almost inevitably involves health workers in making personal assessments about their clients. Important considerations are whether the client is referred to a fee-for-service ART programme or a free one, and whether, in the latter case, ART is available at the local health unit. 91

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo In 2004 when we started research on the dilemmas HIV/AIDS testing presented to health workers, most people accessing ARVs were paying for treatment. Before the national roll-out to district hospitals and upper level health centres in 2005 and the wider availability of free treatment, a positive test presented the dilemma of whether to reveal a treatment possibility that might be lifesaving – yet beyond economic reach. While health workers at rural units seemed to tell all clients about NGOs that provide support, giving information about antiretroviral treatment was rather rare. As one clinical officer, working with VCT explained: These are drugs which are bought and they are expensive so like telling an old woman that those drugs do exist is like an abomination because she will not be able to buy. But if somebody came in and … he talks money and like he’s inquisitive, he has heard about those drugs existing and he says he’s ready to buy then I can go in to talk about them.

He thus expressed the problem that Dr. Harriet Mayanja, the head of a department at the national hospital had earlier described: the need for health workers to decide who should be referred for ARVs. She told how staff in her department used the ‘blanket sign’ to assess who could afford the drugs (Whyte et al. 2004). Those who brought nice blankets to use in the hospital and showed other indications of prosperity were informed about ARVs. Dr. Mayanja felt this was unjust and looked forward to a time when drugs would be free for all. As ARVs become available at government hospitals and higher level health units, the Global Fund and other donors have ensured that they are free to clients. In a sense, ART is being mainstreamed in that it is becoming part of the services provided by Ministry of Health facilities. However in most cases, HIV/AIDS is still exceptional in that there is a special clinic for those who have tested positive, held one or two days a week and staffed by health workers with training in the management of HIV/AIDS. This reduces the chance of keeping one’s HIV status secret in that more health workers get to know who is positive. Clients sitting on the benches waiting to be seen at the HIV clinic may be noticed. But it also means that the clinical officers and nurses who run that clinic get to know their clients and may take a personal interest in their problems. For example, one of the authors of this article was approached by the health worker running the clinic on behalf of one of his clients who wanted 92

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to move to the land of her brother, amongst her patrilateral family. The staff member was aware that we knew this client and her family (though he could not be sure we knew that she was on ART), and he was concerned to help mobilise support for her. Health workers know that their more prosperous and well-known clients are more sensitive about confidentiality. As one explained, ‘People with more money want secrecy. Others talk about them and news of their status spreads quickly, just like for famous people.’ He went on to tell of a case at the local hospital: A young man in our small town, a driver, tested positive, but he wanted to keep it a secret. He feared and would not come to the HIV/AIDS clinic. One of the nurses there was married to his business friend and he did not want that man to find out. So I assigned another nurse to help him. He had been advised about condoms and not to marry, but everybody was on his neck to marry their daughter. When he fell so sick and was admitted to the ward, he did not want to be on the general ward. We gave him a [private] room in maternity. But the health workers found out. It was not because they were giving him his ARVs, he took them himself. But they saw the prescription written on his chart.

The health worker went to extra trouble to help this young man maintain secrecy about his condition, conspiring with him and giving him special consideration. Yet the conditions of life in a rural hospital, where health workers are part of the local community, made confidentiality impossible. The mainstreaming of ART at hospitals and higher level health centres goes together with the routinisation of counselling and testing at these facilities. Both mean the involvement of more staff and more cadres of staff in the clinics and wards in contrast to the earlier VCT procedures where, in principle, only the counsellor knew who was positive. Presumably this will undermine confidentiality even more.

Concern and Indifference Ugandan health workers are often blamed for indifference towards their patients. Like Western bureaucrats described by Herzfeld (1992), they sometimes seem to treat their clients or patients as Them, not Us, dismissing them from the moral world of concern. 93

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo Partly this disposition seems to stem from professionalism and experience. Health workers doing counselling and testing told how difficult it had been at first to inform clients when ‘the machine’ showed them to be positive. ‘It’s hard to face them.’ Margaret Akurut, an enrolled midwife at Busolwe hospital, remembered that her first client cried. But later one got used to it. ‘At the beginning it was so hard to tell. I used to imagine it meant death. But I’ve learned it’s not a death sentence.’ The experienced health workers talked of clients in terms of how difficult they were: ‘Women are more open than men. Men have a lot of stories; they beat around the bush until finally you have to ask if they want to test or not.’ Or: ‘Women are simple; men are complicated. They know more, but they just fear.’ Or: ‘Old people are simple, youth are difficult, women are shy about telling their problems, [and] men just tell you what they want.’ Or: ‘Some just keep quiet, but some had expected [to get a positive test] and they just feel free. They may be so simple, even more than negative clients.’ Although they did not necessarily agree on who was simple and who was complicated, they described clients as types requiring different approaches. The work of counselling seemed to have become routine; they knew that with which they had to deal. Yet when we asked health workers whether they ever had a case that touched them in their hearts,4 many shifted to another mode and told stories about testing colleagues and friends. A midwife counsellor recounted: I counselled a friend who was pregnant. She talked freely but was sort of anxious. I think she knew. When she came for results, I dodged her. She had said she would abort if she was positive. I wanted the pregnancy to grow and wanted her to calm down. Finally I got someone else to give the results. Then she came and talked to me. But now she’s gone to Kampala and I don’t know what happened.

At another health unit, a young clinical officer told of his colleague: I was working with her, a nursing assistant. She came to test, she wanted me to counsel her but I said, ‘now you are my friend, we are used to each other, how are we going to proceed with this?’ Good enough I found someone to counsel her. Worst of it all, when results came out they were positive. Worst too, she was pregnant. So I kept thinking about it, I kept thinking about it. When she could even come towards me, I could not see 94

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the real person I used to see. You know, but just like I have got used to it. I have not shown her that I know, she has also not told me yet.

When asked how he found out, this health worker explained that as the supervisor at his AIC unit, he always went through the register and cards to see if there were any mistakes. The one who controls the paraphernalia of anonymity knows everyone’s secrets. The same man was still thinking about a young woman he had counselled. A girl came for testing. I tested, we found she was positive but she didn’t know that I know her boyfriend. The boyfriend is my closest friend and now the girl is positive. To ask her now, will you be able to share with your boyfriend? She asked me how do I begin? It’s me who counselled her pre and post and she didn’t know that I know her. Even how to approach my friend and talk to him about it, I’ve failed totally. … But still I kept thinking now if she doesn’t tell this one, that boy now, what is his fate? And like they didn’t come together as a couple, then I find it difficult telling the other boy what happened. … I just got stuck. Even now we still associate with him, I always try to talk about it. Now, why can’t you try to test, why can’t you do this and the other. If you have a girlfriend we always test and see. Then he says maybe if I find time I’ll come with my girlfriend. I say, now you’ll come with your girlfriend, why don’t you first take a step alone because at the back of my mind I know the girlfriend has already tested. But with him he hasn’t tested. Why can’t you come again now test and see. But all has not worked well. This is a boy, he’s the only boy in the family – the mother trusts him, looks at him as everything. I kept thinking about that thing.

Counsellors differ. A very experienced VCT supervisor who had been counselling for seven years said that she always had her fellow counsellors take her relatives and friends. Thus she did not have cases that bothered her personally. ‘It is not advisable to counsel family and friends’, she intoned. These examples seem to confirm the view that clients should be clients, that being professional means maintaining an impersonal relation to clients, and that entangling professional and personal relations is a problem. However, matters are not so simple. Firstly, in rural communities where health workers are neighbours and families are extended, it is almost inevitable that counsellors sometimes have previous connections to their clients. Anonymity is not possible, but the confidentiality ethic makes continued social interaction pos95

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo sible. Official, formal ignorance becomes a means of coping in the workplace and in homes and villages. When group boundaries are distinctly and publicly drawn, as was the case when material support was being distributed at Ekataali Hospital, anonymity has been breached and social communication is predicated on following procedure and ‘benign indifference’ to clients as individual persons. Secondly, often the willingness to go beyond impersonality – and even to ignore the ethics of anonymity and confidentiality – enables the health worker to help people, especially in the particular conditions of the actually existing health care systems of Uganda. At minimum, health workers who present themselves as virtuous and concerned, emphasise that they do not stick rigorously to work schedules. The VCT supervisor mentioned above had a staff house at the unit. She remarked that even when she was off duty, if clients came to the unit, she went to the AIC office to counsel them. ‘This is my work’, she said. At a rural hospital, there are only two enrolled midwives to do all the examinations at the very well-attended antenatal clinic as well as the extra tasks of the PMTCT programme. Sometimes they do not manage the PMTCT part, and in any case they often do not manage to give clients their test results the same day, as prescribed. So clients come back some other time. ‘But we know our clients, we work on them first. They come to us privately and we talk to them alone.’ The clients know them too. As they remarked, ‘Some clients want to receive their results from a particular midwife. When they see a certain person is giving results, they walk out’. Health care at rural health units is often most effective when rules are broken and when health workers do favours for people they know. In the interests of concern, they may act unethically by breaking confidentiality. In doing so they treat clients and their families as persons with whom they have relations beyond the formalities of professional and client, as was the case when a health worker asked us to help one of his clients move to the neighbourhood of her extended family. Our old friend Musani had been ill on and off for years. Like his father and grandparents, he generally avoided going to the health unit. But at one point, as others told us, Musani was dying. ‘He was really going.’ His father had no money and it was only when a neighbour contributed 5,000 shillings for fuel for the priest’s car that Musani was taken ‘at least to die in hospital.’ Medicines and a drip were prescribed, and as the family wondered how 96

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they would manage to buy them, a health worker broke the rule of anonymity. ‘I have seen that man at the AIC clinic. He has a pink card. Let him bring it.’ Musani had not wished to talk about his positive status, particularly with his wives, and the information given by the health worker was certainly confidential. Amid some confusion, it was discovered that Musani had an identification card that he had entrusted to the care of his mother, who lived elsewhere. She fetched it and showed it to Wanjala, the counsellor of the AIC clinic, who verified that Musani was HIV positive and eligible for the free medicines provided by the NGO programme. So Musani was treated and he survived on that occasion. In professional discourse ‘shared confidentiality’ implies helping the client by giving restricted information to another health or social worker on the assumption that he or she will treat it with complete discretion. But speaking out, as in Musani’s case, may function in another way for those involved. The ‘renominalizing’ of anonymous clients can make connections across the cleavage between health workers and clients/patients. Knowing when to speak to – and how to speak of – a client humanises the clinic. It also introduces elements from another underlying moral discourse.

Ethics and Morality: In Conclusion Morality can be contrasted with ethics, as Kleinman (1995) forcefully does in his argument for an anthropological approach to bioethics. He sees ethics as abstract regulating principles established by experts about the good and right way for professionals to offer services to their clients. Morality is concerned with what is at stake in everyday experience in particular local worlds – the local politics of interpersonal relations. Moral decisions, writes Kleinman, are less about abstract values than practical dilemmas in the processes of social life (1995: 45–46). However, as we have shown, ethics too are appropriated in specific moral worlds and thereby take on new significance in local interactions. The AIDS epidemic is occurring in settings with long experiences of serious illness and death. Yet researchers seldom see it in a broader cultural context of communication and management of illness. Perhaps it would help to consider the AIDS-related problems of secrecy, confidentiality and morality as part of a wider pattern. 97

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo In eastern Uganda, people enquire about health in the course of properly greeting one another. Such exchanges are not simply formalia (how are you? I’m fine) – or at least they ought not to be. One should not keep quiet about sickness, one’s own or that of one’s family. Confidentiality here is not encouraged. No one can help an ill person if that person does not articulate the illness. Several proverbs express the foolishness of not speaking. What you keep secret will be known by all when it is too late to do anything about it; silence will be broken by the noise of a funeral. The one who keeps quiet – he too cries for his mother The one who always hides sickness is revealed by [the sound of] mourning. ‘I had wanted to speak,’ he says at the grave. (Whyte 1997:16)

These proverbs assume that dealing with sickness is a social matter that will require the mobilisation of others. They posit a moral community of concern. Indeed such concern is performed in many ways – by visiting the sick, expressing sympathy, asking after family members and neighbours known to be ill – as well as by helping with treatment and care as part of a therapy-managing alliance. But talking about sickness – or any personal details of an absent person – has another side, known in Ugandan English as ‘backbiting’. Backbiting is not just openly malicious gossip. The term seems to capture social sensitivities about being the object of conversation when one is not present, even when nothing malign is mentioned. Behind it lies the possibility that not everyone is well disposed, that envy or dislike might be just under the surface. It is good to talk about one’s own misfortunes, but one never knows if someone might be taking quiet – or less than quiet – satisfaction in another’s problems. To be open and mobilise sympathy and support or to remain silent in the hope of restraining backbiting – these are everyday decisions for social actors in eastern Uganda. The moral virtue of being open about AIDS – of identifying oneself as a PHA (person living with HIV/AIDS), which many activists espouse – resonates with the old notion reflected in Nyole proverbs that speaking about sickness allows others to help. For AIDS activists it also allows the PHA to help others in that breaking the silence is a move against stigma. The hesitation that so many people have about declaring their status is more than fear of backbiting however. 98

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Women are afraid that their husbands or in-laws will throw them out; men fear that their wives will leave them. The social consequences can be grave. It is within this general cultural context that we should consider the situation of health workers. In rural Uganda the ethics of confidentiality play a role in dealing with interpersonal relations. For health workers who know their clients, confidentiality provides an acceptable way of bracketing certain information while continuing interaction with colleagues, relatives and neighbours. But more than that, the ethics of confidentiality should be seen as part of a social process unfolding over time. Codes of ethics are generally atemporal, whereas moralities and their dilemmas unfold in the processes of social life. The premise of confidentiality is most important at the point when people are deciding to test and getting their results. But as time goes on and health workers and their clients continue their interactions with others, confidentiality may be put aside, depending on the development of illness and the need for support. Other issues are at stake, and they play into a morality of disclosure that resonates with established patterns of social interaction. Clients who start on ART are required to disclose their treatment to at least one supporter at home. Often clients tell close family members or friends (more often than sexual partners), especially because they may need help and special consideration. Thus the secret is shared, and health workers too may feel that it is less of a secret after time. An ethics of confidentiality has been an integral part of the medical management of HIV/AIDS, in particular the practices and principles of voluntary counselling and testing. Those who have been to courses to learn counselling, and those who must follow the procedures of filling in the forms, keeping the registers and giving out pink cards know that a professional owes discretion to a client. At the same time, they urge their positive clients to join organisations that make discretion difficult. Having to line up for rations of material support and having to let hospital staff know that one is entitled to free medicine are kinds of public announcement of private information. In their efforts to help people get support from the various special programmes funded by external agencies, health workers must urge their clients to reveal themselves. Sometimes they also expose clients in order to help them, as did the hospital staff member who announced that Musani had a pink card and, therefore, could get 99

DSusan R. Whyte, Michael A. Whyte, David Kyaddondo free medicine. By breaking silence it may be possible to delay the noise of mourning.

Notes 1. Much of the material upon which our exposition is based comes from interviews of twenty-five health workers and NGO staff, mostly carried out in 2004 and 2005. We also draw upon conversations and interactions with health workers and families we have known over the years, as well as continuing research on access to ARVs in eastern Uganda. Our research is part of the Tororo Community Health (TORCH) project, a twelve-yearold collaboration between Danish and Ugandan scholars financed by Danida. 2. Seidel (1996: 423) reports that confidentiality and secrecy are translated by the same term, imfilho, in Zulu. 3. The records of the AIC centre in Busia, a border town, show many clients coming over from Kenya, presumably to avoid testing where they are known. 4. This question was inspired by the work of our colleague Jens Seeberg on ethical dilemmas of health personnel in South Asia

Bibliography AIC (AIDS Information Centre). n.d. ‘Knowledge Is Power … Hold on to It’. Kampala: AIC. ———. 2006. ‘Annual Report for 2005’. Retrieved 13 May 2007 from http:// www.aicug.org/ Beauchamp, T. L. and J. F. Childress. 2001. Principles of Biomedical Ethics, 5th ed. Oxford: Oxford University Press. Das, V. 1999. ‘Public Good, Ethics, and Everyday Life: Beyond the Boundaries of Bioethics’, Daedalus 128(4): 99–133. De Cock, K. M. and A. M. Johnson. 1998. ‘From Exceptionalism to Normalisation: A Reappraisal of Attitudes and Practice around HIV Testing’, British Medical Journal 316: 290–93. De Cock, K. M., D. Mbori-Ngacha, and E. Marum. 2002. ‘Shadow on the Continent: Public Health and HIV/AIDS in Africa in the 21st Century’, The Lancet 360: 67–72. De Waal, A. 2006. AIDS and Power: Why There is No Political Crisis – Yet. London: Zed Books. Fombad, C.M. 2001. ‘The Crisis of Confidentiality in the Control of the HIV/ AIDS Pandemic in Botswana’, International Social Science Journal 53(170): 643–56. Kleinman, A. 1995. Writing at the Margin. Berkeley: University of California Press.

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Heald, S. In press. ‘Is the Sharia of the Doctors Killing the People? A Local Debate on Ethics and the Control of HIV/AIDS in a Rural Area in Kenya’, in W. Geissler (ed.) Evidence, Ethos and Ethnography: The Anthropology and History of Medical Research in Africa. Oxford: Berghahn Books. Health Service Commission. 2002. ‘Code of Conduct and Ethics for Health Workers’, Kampala. Herzfeld, M. 1992. The Social Production of Indifference: Exploring the Symbolic Roots of Western Bureaucracy. Chicago: Chicago University Press. Kyaddondo, D. and S. R. Whyte. 2003. ‘Working in a Decentralized System: A Threat to Health Workers’ Respect and Survival in Uganda’, International Journal of Health Planning and Management 18(4): 1–14. Luginaah, I. N., E. K. Yiridoe and M. -M. Taabazuing 2005. ‘From Mandatory to Voluntary Testing: Balancing Human Rights, Religious and Cultural Values, and HIV/AIDS Prevention in Ghana’, Social Science and Medicine 61: 1689–1700. Parkhurst, J. O. and L. Lush. 2004. ‘The Political Environment of HIV: Lessons from a Comparison of Uganda and South Africa’, Social Science and Medicine 59: 1913–24. Pool, R., S. Nyanzi and J.A.G. Whitworth. 2001. ‘Attitudes to Voluntary Counselling and Testing for HIV among Pregnant Women in Rural South-West Uganda’, AIDS Care 23(5): 605–15. Seidel, G. 1996. ‘Confidentiality and HIV status in Kwazulu-Natal, South Africa: Implications, Resistances and Challenges’, Health Policy and Planning 11(4): 418–27. Whetten-Goldstein, K., T. Q. Nguyen and J. Sugarman. 2001. ‘So Much for Keeping Secrets: The Importance of Considering Patients Perspectives on Maintaining Confidentiality’, AIDS Care 13(4): 457–66. Whyte, S. R. 1997. Questioning Misfortune: The Pragmatics of Uncertainty in Eastern Uganda. Cambridge: Cambridge University Press. Whyte, S. R. et al. 2004. ‘Treating AIDS: Dilemmas of Unequal Access in Uganda’, Journal of Social Aspects of HIV/AIDS Research Alliance 1(1): 14–26. Yoder, P. S., A. R. Katahoire, D. Kyaddondo, Z. Akol, R. Bunnell, and F. Kaharuza. 2006. Home-Based HIV Testing and Counselling in a Survey Context in Uganda. Calverton, Maryland: ORC Macro.

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DChapter 5 ‘My Relatives Are Running Away from Me!’ Kinship and Care in the Wake of Structural Adjustment, Privatisation and HIV/AIDS in Tanzania Hansjörg Dilger

[Structural adjustment policies in Africa] were originally designed to stabilize developing countries’ economies. In reality, they imposed harsh measures which deepened poverty, undermined food security and self-reliance, and led to resource exploitation, environmental destruction and population displacement. … Prior to the 1980s, the district hospitals, community health centres and other outreach health posts provided medical services and essential drugs free of charge. With reforms, user fees and cost recovery were introduced, and the sale of drugs was liberalized. … By the end of the 1990s, the health systems in most sub-Saharan countries had virtually collapsed. Few people could afford annual checkups, medicines or user fees at hospitals. Dr. E. M. Samba, former World Health Organisation regional director for Africa (December 2004)

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‘After SAP’: The Privatization and Transnationalization of Tanzania’s Healthcare Sector (1985–) At the end of the 1970s, most countries in the eastern and southern African regions stood on the verge of economic and political collapse. Governments were not only confronted with growing external debts and exploding costs in heavily subsidised economies and over-funded welfare systems; they were also struggling with the consequences of the international oil crisis and the global economic depression. These factors combined drove many African governments to turn to the World Bank and the International Monetary Fund (IMF) for assistance. The loans which were granted to African states by the World Bank and the IMF were intended primarily for use in stabilising economies and paying off of national debts. However, they were also made contingent upon the implementation of a series of structural reforms in the respective countries which entailed, amongst others, currency devaluation, the reduction of trade barriers and the privatisation of state-owned enterprises. Furthermore, structural adjustment policies (SAP) implied a steep reduction in governmental expenditure for healthcare, education and housing programs, including a drastic reduction of salary expenses for public sector employees. The effects of structural adjustment on Tanzania’s healthcare sector were manifold. The formerly socialist country, which had banned private medical practice in 1977 in order to eliminate ‘profit thinking in the face of human suffering’ (Iliffe 1998: 209), reopened its healthcare system for private practitioners and health institutions in 1992 (217). In 1999, there were already more than 500 private clinics and hospitals in Dar es Salaam alone (Boller et al. 2003: 117); in the year 2000 the government counted more than 1,270 private or religious dispensaries and 76 nongovernmental hospitals throughout the country.1 Cost-sharing programs – which were initially opposed by former President Nyerere and his ‘committed socialist supporters’ (Iliffe 1998: 208) – were introduced in 1993 (219). These measures placed heavy burdens on patients and their families who, in addition to hospital and clinic charges, had to cover costs for transport, food, (admission) bribes, drugs and other medical supplies. In 2004, a report by the Women’s Dignity Project stated that ‘health care 103

DHansjörg Dilger charges [in the country] have placed an impossible financial burden on the poorest households; many fail to access primary care when they need it most and many more fail to obtain the necessary referral for more skilled care’ (Mamdani and Bangser 2004: 2). Finally, the introduction of SAP led to drastic cuts in state expenditures for the healthcare sector, and to an ever-growing reliance of Tanzania’s healthcare system on international and private funding to make up for the growing deficit: In 1990–91, the national budget allocation for healthcare in Tanzania had fallen to 5 per cent, from 9.4 per cent in the 1970s (Harrington 1998: 149). In 2004, 27.1 per cent of capital expenditure for the healthcare sector was coming from external sources; private expenditure on health – which partly comprised external funding through international NGOs – had risen to 56.4 per cent (World Health Statistics 2007).2 The growing internationalisation and privatisation of Tanzania’s healthcare sector in the wake of structural adjustment have become particularly striking with regard to the care and support for people with HIV/AIDS.3 In large parts of the country, the sick and their relatives are dismissed by overfilled and understaffed governmental hospitals once a patient’s HIV infection has been established (see Katapa 2004: 673; Dilger 2005: 110). Those patients who are admitted are confronted with health staff that is often insufficiently trained to provide pre- and post-test counselling or adequate care and nursing for HIV/AIDS patients. In the case of private hospitals, on the other hand, patients and their families often do not possess the financial means to pay the hospital fees, which may become excessively high once a terminally ill family member is admitted for stationary treatment. A study in rural Mbeya has shown that most families avoid the hospitalisation of their AIDS sick relatives, claiming that ‘After all, I do not have money for keeping her/him in hospital and buying the medicine’ (Kapata 2004: 677). Given these circumstances, the care for people with HIV/AIDS has shifted almost inevitably onto the patients’ families, who in turn can rely upon only minimal support from the slowly expanding home-based care system. Home-based care consists of regular visits by trained health staff and the medical treatment of opportunistic infections in a client’s home and is offered mostly by internationally funded NGOs that have mushroomed over the last years in the cities and also, though only sporadically, in the rural areas. 104

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In this chapter I describe how family care for relatives in rural Tanzania has been organised in the wake of structural adjustment, privatisation and HIV/AIDS. I will argue that even families in rural and urban settings are becoming increasingly overwhelmed by the implications of caring for sick relatives. In some instances, the rising expenses and shortages of labour resulting from a series of deaths and prolonged illnesses have led to the destabilisation of families’ income bases. Families are furthermore becoming more and more overwhelmed by the enormous burden the repeated care for the sick places upon them and the enormous challenge of providing additional resources for burials and for the dependants of deceased family members. Finally, the emotional strains on the predominantly female caregivers are aggravated by the fact that people with HIV/AIDS often react to their diagnosis with feelings of shock, self-blame and anger or depression (Sarikaeli 1996: 48–62). The feeling of becoming emotionally, economically and socially dependent on relatives often contributes to discordant relationships between caregivers and patients – the more so if the sick, the majority of whom come from the socially and economically productive generation, were the former breadwinners of families (for Namibia see Thomas 2006: 3184). I will first give an overview of the research site in rural Tanzania where I have carried out fieldwork on a regular basis since 1995, followed by a brief exploration of the meanings and terms employed by my interviewees and by home-based care organisations for the English term ‘care’. I will then present the case study of a family in the rural research site which lost three adult sons to AIDS within a short period of time and how the family discussed the series of deaths and suffering in predominantly social and moral terms. In the concluding section, I will argue that the dynamics of care in rural areas of eastern Africa require a careful (re)examination of the conceptual and methodological assumptions implied in analyses of support systems and households in the context of HIV/AIDS. As Tony Barnett and Alan Whiteside (2002) have remarked, the growing field of household studies in relation to HIV/AIDS has produced predominantly quantitative survey-based studies which fall short of being able to ‘tell about the underlying misery’ of care and support arrangements in under-resourced areas; they also fail ‘to capture the dynamics of household and intra-household allocation and relation which underlie household decision making’ in the context of HIV/AIDS (192). 105

DHansjörg Dilger This chapter argues that relationships of care – which comprise all those decisions made by and outside of households with regard to HIV/AIDS-related illnesses and deaths of family members – are embedded in a complex web of processes and meanings that tie kinship conflicts to the dynamics of rural-urban migration, the political economy of healthcare and the massive social and moral pressures that are exerted on individuals, lineages and whole communities by the HIV/AIDS epidemic in Tanzania.4

Attending to the Dying: Notions of ‘Care’ and ‘Respect’ in Rural Mara The research site in northwestern Tanzania – which is situated close to the shores of Lake Victoria – is populated mostly by the Luo who settled in the region throughout the nineteenth century and who today live in widespread settlements and villages.5 Most families in the area earn their income through a mixture of income-generating activities, ranging from agricultural work on family-owned plots, to involvement in small-scale trade and informal businesses and jobs at one of the two local hospitals or in one of the local administrative offices. The establishment of a fishing business, which is part of a growing fishing industry connecting the eastern shores of Lake Victoria to large fishing cooperatives in Kenya and on the international market, has resulted in a modest economic boom in the area in recent years. Before the arrival of the fishing industry, however, the region was characterised by growing poverty, periodic droughts and crop failures, and especially by the outward migration of the younger generation to urban centres. A major problem within the research area is the HIV/AIDS epidemic. While HIV infection rates in Mara have stayed comparatively low – in 2001 9.0 per cent of the region’s adult population was infected with the virus (The United Republic of Tanzania, 2001) – every family and every individual has had immediate contact with the disease through individual infection or illness or death among family or friends. In the absence of home-based care services and a regularly functioning HIV testing and counselling system, most HIV/ AIDS cases are diagnosed during the hospitalisation of a sick person, often as the result of other illness episodes, like malaria or tuberculosis. Tests are often made without the explicit consent of the patient. 106

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While HIV positive patients in Tanzania do have the right to be told about their diagnoses according to national law (Harrington 1998: 161), for doctors and nurses in the local hospitals, HIV tests have become a matter of medical routine which helps primarily to explain the persistence of other diseases and disease symptoms. As HIV tests are often conducted in secret, health staff tends to avoid directly confronting patients with the results, which then are conveyed to the patient’s close relatives – often combined with the advice to remain silent about the diagnosis and to stop spending money for future medical treatment. In those cases where patients are informed about their HIV infection, they keep it secret out of fear that they will be stigmatised and rejected by their families and the community should their infection become known. The result of this joint silence is that there is often a tacit knowledge within families that a member is infected with HIV, but seldom open discussion of this fact or about the impact the illness and the threatening experience of death are going to have on the family or on its ability to care for the sick.

Figure 5.1: Illustration in a booklet, instructions for ‘good’ and ‘safe’ care for people with HIV/AIDS. Source: Femina HIP Multimedia Initiative, Tanzania. 107

DHansjörg Dilger Discussions of home-based care in Tanzania have been shaped largely by the growing NGO sector that has produced – in concordance with the national guidelines for home-based care (The United Republic of Tanzania 1999) – a number of booklets and magazines providing instructions for ‘good’ and ‘safe’ care for people with HIV/ AIDS (see fig. 2). These guidelines focus primarily on the adequate training of home-based care providers as well as on the hygienic and medical measures that caregivers should follow in order to avoid infection with HIV when washing and touching a patient. They also offer advice concerning nutritious food, as well as maintaining the patient’s personal hygiene (e.g. with regard to bedding and clothes). What these guidelines usually do not reflect, however, is that acts of care and support are situated in the specific relations between social persons that define themselves not primarily as ‘caregiver’ (mtoa msaada) and ‘patient’ (mgonjwa), but first and foremost through their relationships as siblings, parent and child,6 spouses, in-laws, neighbours or friends and so forth. Consequently, people involved in relationships of care and support in Mara were concerned not so much about specific hygienic measures such as wearing gloves or the right way to wash a relative’s body. They were much more concerned about the way relationships evolve in the context of illness and death between members of a family, or the sick person and the community at large. Due to the silence surrounding HIV/AIDS within families, it is often difficult to identify the exact circumstances under which changes in relationships of care and support can be ascribed to HIV/AIDS and/or whether they are the result of intra-familial conflicts mentioned by individuals and families in interviews and informal conversations. When I asked people in Mara if and how social relations changed as a result of a deadly and stigmatised illness like AIDS, they employed essentially four Kiswahili terms to describe this individual and communal experience. When they referred to the specific acts that are connected to the care of a sick person, they used the verbs kutunza, and preferably kuhudumia, which can be translated as ‘to guard, to protect, to keep safe’ and ‘to serve, to attend to somebody’, respectively. These verbs refer to a wide range of activities and services in situations in which HIV/AIDS patients have become dependent on the support of family and community members and to all those instances of an illness where the help of relatives or close 108

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friends is needed: especially the support through financial resources or food and the nursing of a person, for instance, the preparation of food and medicine, the bathing of a patient, carrying the sick person to the toilet and washing soiled clothes and sheets. A third term used in describing relationships of care was the verb kujali which refers primarily to the quality of care provided to the sick. With kujali people in Mara expressed whether a family member sufficiently cared for a relative. While the term has obvious parallels with the English verb ‘to care’ – and covers all those aspects which are expressed by prepositional verb forms such as ‘to take care of, to look after’ – the original meaning of kujali is ‘to give honor to, to pay respect/reverence to somebody’. Thus, when kujali was employed in the context of AIDS, it referred not only to the specific acts performed in the care of a sick person, but also to the way in which someone respects his relative, neighbour or friend as a fellow human being through acts of care. The use of the verb’s negation (infinitive: kutojali), on the other hand, emphasized the failure to provide support in a situation of need. Thus, when individuals with HIV/AIDS used the 3rd person form hajali with regard to a relative, they meant that this person did not pay attention to their misery and, more generally, that the relative did not care about the suffering of other persons. It implied that a family member has stopped paying the obligatory respect toward a relative who should be treated first and foremost as a social and moral person who is part of an extended family and the community at large. This situation was then described with the verb kutenga, the fourth term used in conversations on care, social relations and HIV/AIDS: kutenga, which can be translated as ‘to separate, remove, withdraw, divide off ’, referred not only to all those aspects covered by the English term ‘discrimination’, but also to a more encompassing dissolution of social relationships and kinship bonds in the context of crisis. In the following case study I will show that the various dimensions of care – and of the failure to provide care and support – can all be experienced within one and the same family. At the same time, however, I will argue that acts of respect, support and solidarity are not expected by all relatives in the same way. Based on claims made on carefully differentiated kinship obligations, certain people in patrilineal kinship networks are expected to provide more care and support than others – with the denial of such support leading to disappoint109

DHansjörg Dilger ment and the feeling of abandonment at a critical moment. Finally, the case study shows that relationships of care cannot be understood as a series of isolated acts – or as a specific constellation of social relations as they exist at an isolated point in time. Rather, acts that demonstrate a caring and respectful relationship over an extended period of time are embedded in family biographies and kinship dynamics which often come about independently of HIV/AIDS illnesses and are intensified by the experiences of suffering and death.

‘We Were Tired of Him’: The Mrungu Family During her marriage to Opiyo Mrungu, Mama Samson (about 70 years old) gave birth to three daughters and eight sons. The children’s education and securing the money for their schooling and clothing were, by and large, her responsibility. Her husband, a doctor in the local hospital, cared little for Mama Samson and their eleven children nor for the nine children he had fathered with his second wife. According to Mama Samson, Opiyo Mrungu was absent from the family’s compound for most of their marriage and spent his income mostly on drinking alcohol with his friends in local bars. Looking back, Mama Samson recollects that her children were ‘good children’ (Kiswahili: watoto wazuri) – at least when they were young. In the 1970s and 1980s, they helped their mother not only with cultivating the family’s fields, but also with the fish trade she had started. When her children grew up, however, they started to ‘imitate’ (kuiga) their father’s ‘character’ (tabia). Six of Mama Samson’s eight sons began to engage in semi-legal businesses all over Tanzania; nearly all of them started smoking and drinking alcohol and spent most of their money on their girlfriends. Only two of Mama Samson’s sons continued with higher education and found wellpaying jobs in Dar es Salaam. These two became – together with Mama Samson’s eldest daughter, who worked as a teacher in a nearby town – the main pillars in sustaining the Mrungu family. Mama Samson’s eldest son even bought a milling machine for the family, which his mother installed in the semi-urban centre close to her home village and thus supported the family in times of need. In the early 1990s – the time when the drawbacks of structural adjustment programs had become tangible for most rural families – 110

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the situation in the Mrungu family worsened following the death of Mama Samson’s husband after a long and exhausting illness, shortly followed by that of her second eldest son. Mama Samson is certain her son died of AIDS. Her assumption is based not solely on the diagnosis which she was given in the local hospital. As a ‘saved’ (kuokoka) woman who belongs to one of the local Pentecostal congregations, she is convinced that her son’s illness was a direct outcome of his ‘worldly activities’ (mambo ya dunia) which are widely associated with an increased risk for contracting HIV. Her view was further strengthened when two of her other sons – also repudiated to have led immoral lifestyles – returned home, in 1997 and 1999, and died from the consequences of AIDS. In both cases she saw the slow wasting away of her sons’ bodies and noted the typical symptoms associated with this ‘illness of today’ (ugonjwa wa kisasa). She did not, therefore, have much reason to doubt the HIV positive diagnosis given to her by the doctors. She was, moreover, the one who provided the money for their treatment in the local hospital and who nursed her terminally ill sons after their dismissal from stationary treatment. With regard to her fourth son who died at the age of thirty-four in 1999, she recounted: I myself, his mother, looked after him. There was a time when even his wife ran away. He is my blood and I had to do that. He had this type of diarrhoea where nobody could have been nursing him – except for his mother. At one point he had become so thin that I carried him like a small child to the bathroom and I washed him. After that I carried him back to his bed and washed his clothes. To be honest, his wife could not have taken care of him like I did.

When I asked Mama Samson’s sons why they had not supported their mother in the task of nursing their dying brothers, they admitted that they should have looked after their relatives better. However, at the same time, they emphasised how difficult it had been to nurse their dying relatives. Samson Mrungu (male, 38), the third son, had initially looked after his eldest brother: SM: When somebody becomes ill and people start to suspect that he has AIDS, their relationships [with the sick person] will start to diminish. Even if you felt respect and love for each other they will talk about [this person] in the streets: ‘Aah, leave this person alone, he has AIDS.’ … Even me – although I was trying to nurse [my brother] at the beginning, 111

DHansjörg Dilger I hated it sometimes. I didn’t want to tell him directly, because he is my relative. But deep in my heart I hated it. HD: Why do you think that people were afraid of him? SM: Some fear the sick persons because they think: ‘If I eat with him or touch him, I will get his disease.’ It has also occurred that families have chased away their sick relatives. If somebody became sick in Dar es Salaam or Mwanza and returns home people will say: ‘Go back to where you came from! Don’t bother us with your disease! You got your disease from the town and now you bring it to us.’ This happens. HD: Do these sick people return to town then? SM: No, they won’t return, they say: ‘Where shall I go while my home is here in the village?’

Another brother of Samson, Masanja Mrungu, thirty-four years old, also expressed the ‘tiredness’ that he felt towards his dying brothers. He was even accused by his extended family of having left the family’s compound for business reasons at a time when his younger brother Omollo was about to die. Masanja justified his own action by saying that Omollo himself sent him and his other relatives away – he suspects, because his dying brother was so upset that his brothers had cared so little for him: We were tired of him. He had been sick for such a long time and we hadn’t looked after him well – that’s why he told us to leave him. Even at his burial none of his brothers was present. Now it looked [to other people] as if we had been tired of him: The one day I am leaving, the next day he dies.

The act of leaving a dying family member and the fact that none of the Mrungu brothers attended the burial of Omollo were the most explicit proofs for the wider family and for the community at large that Omollo was abandoned by his close relatives. This was also felt by the Mrungu nuclear family who discussed the case over and over again in order to find out why things had developed in such a critical way. However, while there were times of contemplation and mourning – and also moments of self-blame for not having provided better care for the late relatives – the Mrungu family also reflected on the reasons why their lineage had been hit so badly by AIDS and how further suffering could be prevented. With the death of each of her sons, Mama Samson became more and more convinced that her re112

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maining family had to be brought back to the ‘ways of God’. She took great pains to ensure that her youngest son Patrick, who lived in Dar es Salaam together with his wife and two small children, was not going back to town after his last visit to his home village. She also provided a small house on the family’s compound for the pastor of a Pentecostal congregation who was supposed to preach to her adult sons and ‘help change their character’. As she put it: My son Patrick and his wife are controlled by their habit of drinking beer; they spend all their money on drinking. It’s better when they stay here – even if they drink, their children eat and sleep well. … Now I gave a house to this pastor so that he can help my sons and their wives with the ‘things of the soul’ (mambo ya kiroho).

Mama Samson’s sons, on the other hand, had their own reasons for the family’s severe afflictions. Some of them claimed that the afflictions were the result of a ‘curse’ (laana) that had been brought upon the family by their dead father’s ‘bad character’ (tabia mbaya) which caused their drinking habits and premature deaths. However, others were convinced that the suffering was not caused solely by AIDS or a curse, but that it was, at the same time, the result of chira. Chira is a wasting disease which has symptoms very similar to AIDS and results from the non-observation of ritual prescriptions associated with burials and mourning periods, as well as with farming, house-building and lineage-life in general. Most of these norms concern the regulation of sexuality and involve strict rules on how, between whom and in which periods of time sexual intercourse is allowed or even prescribed. The neglect of these regulations may cause illness (see Heald 1995; for a more detailed discussion, see Dilger 2005, 2006). In the case of the Mrungu family, there were several reasons for chira which were said to have mutually reinforced each other. The most likely reason was that the first son who died had had sex with a girl in the house of his mother about one year before his death – an act which was strictly forbidden according to Luo tradition (mila). The most vehement proponent of this version was Masanja Mrungu who had caught his brother and his girlfriend in his mother’s house and scolded them for their thoughtless and dangerous behaviour. Masanja was convinced that his brother would still be alive if he had been treated for chira at an early stage of his illness. 113

DHansjörg Dilger The second reason for chira weighed even more heavily, however, and at the time of my research it had become a threat to the wellbeing of the whole lineage. According to the young men and women of the family, as well as the lineage elders, chira had started after Mama Samson and her husband’s second wife refused to be cleansed through ritual sex following the death of their husband. Most of my interviewees in Mara would have considered the death of a close relative a potential source of pollution, which can affect not only the partners of the late family member, but the whole family. To eliminate the threat of pollution, all family members are required to have cleansing intercourse with their partners after the widow/ widower has fulfilled his/her ritual obligations. Thus, it is only after control over death has been gained through the observance of these prescriptions that the conditions for the continuity and the success of a lineage in everyday life can be reestablished (see Whyte 1990: 95); if the prescriptions are not observed, however, the whole family may become sick and eventually die from chira. In the Mrungu lineage this ritual cycle was broken when Mama Samson and her co-wife claimed that they could not be cleansed after their husband’s death as they were religious people who were following the rules of God. As a result, the widows of the sons who died after their father (i.e. Mama Samson’s late husband) also could not be cleansed. Every sexual act which took place between the sons of the family and their wives reinforced the danger of chira. According to one of the sons, the mother was ‘closing’ her children through the refusal to become cleansed (ametufunga). The main aim of some of the male (and even some of the female) family members was, therefore, to cleanse Mama Samson and her co-wife by a man from the family. Once this was done the widows of the other men who had died could also fulfil their ritual obligations and thus levy the danger which was threatening the lives of other members of the extended family.

The Morality of Kinship and Care in the Wake of Structural Adjustment, Privatisation and HIV/AIDS James Ferguson has suggested that if we think about the way the African continent has been inscribed in processes of globalisation 114

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and the ‘neoliberal world order’, we should think less about spatially contingent flows of capital, ideas and practices that work their way into contiguous and overlapping territories; but more about the way in which global capital and influence are hopping selectively over Africa, thereby connecting ‘the enclaved points in the network while excluding (with equal efficiency) the spaces that lie between these points’ (2006: 47f.). This chapter has been concerned with the way practices of caring and nursing have been established in Tanzania in the context of international funding strategies and the rapidly transforming healthcare system in the wake of structural adjustment, privatisation and HIV/AIDS. I have argued that the field of HIV/AIDSrelated caring and nursing in the country has been structured, on the one hand, by the implementation of the NGO-supported, homebased care system which is financed largely through the temporarily limited efforts of international donors and which has precluded for many years more sustainable strategies for the (re)building of the healthcare system in the context of economic reforms and HIV/ AIDS. On the other hand, acts of caring and nursing are configured essentially by the fact that many people do not have access to – or refuse to use – the selectively established services of nongovernmental organizations which have concentrated largely in urban settings and which rely heavily on the language and practices of international funding agencies. Consequently, while many Tanzanians have developed a sense of their government’s limited ability to control the living conditions of the people on a daily basis, they look for ‘collective solidarity’ and ‘moral beneficence outside of the state altogether’ (Ferguson 2006: 85) – in the case of HIV/AIDS, in kinship networks or in religious congregations in urban centres (see Dilger 2007). Relationships of care in the HIV/AIDS epidemic have so far been a neglected topic in anthropology – at least with regard to those instances of care and nursing that do not take place in NGO settings or in the context of home-based care. On the one hand, this lack of attention is due to the methodological and ethical difficulties that are associated with ethnographic fieldwork on family care and HIV/ AIDS-related illnesses and deaths. Anthropologists rarely have access to HIV diagnoses made in hospitals, which often makes it difficult to ‘know exactly’ which family or community members are infected with HIV. In this situation researchers must rely upon rumours spread in communities about who is infected with HIV and which lead to the 115

DHansjörg Dilger classification of research subjects as ‘HIV positive’ or ‘ill with AIDS’. Although some doubts always remain over the ‘factual’ (i.e. biological) basis of the resulting data, I regard rumours about persons with HIV/AIDS as ‘social facts’ (White 2000); From an anthropological perspective, it is in the first place a matter of how social relations are addressed through rumours about suspected HIV infections and how such rumours determine the familial and social treatment of sick relatives.7 On the other hand research into care and AIDS also presents a considerable conceptual muddle in that it is often unclear which analytical social unit is suitable for the description of relationships of care in the context of the epidemic. Research on AIDS to date has concentrated largely on the household and the question of which resources households make available for care, as well as which household members carry the responsibility for the care of relatives sick with AIDS. The results of these studies indicate three clear parallels to the results I arrived at in my research. First, older women – in addition to their daily work – take over a central role in the care of the sick and orphans and in the process often push the limits of their capacities (UNAIDS 2000:14ff.; Nnko et al. 2000: 548ff.). Second, studies to date have shown that the household expenditures for care and treatment are often significantly less than those invested for the burial of relatives (Ngalula et al. 2002: 875–77). Third, it is often obvious that in the context of HIV/AIDS there is a close connection between the morbidity, mortality and urban-rural mobility of household members. In a study on the rural Mwanza region, 17 per cent of the deceased adults in the households studied had joined the household within the last twelve months before their deaths (Urassa et al. 2001: 2022). Similarly, a study among HIV infected ‘prostitutes’ in the Morogoro area in the early 1990s showed that many of them returned to their rural homes to be cared for and die (Nkya et al. 1995; thus cited in Katapa 2004: 673) In order to better understand what is concealed behind the phenomenon of the return of the sick to their rural homes – or how the provision of care by individual family members is viewed and enacted by families and household members themselves – attention should be focused less at the level of ‘household’ and more at the level of ‘kinship relations’. Jane Guyer and Pauline Peters (1987) have pointed out that research focusing on households is above all 116

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meaningful if the constellation of groups that combine to form a household at a specific point of time is to be described. Especially in the context of policy making, household studies have provided useful information concerning how consumption and production practices in these entities are constituted and under which circumstances class and gender differences limit access to resources. At the same time, however, the dynamic of households – their composition as well as the dynamic of their functioning over a longer period of time – can be understood only in consideration of kinship relations. Households, according to Guyer and Peters (209), are not merely ‘places to live/eat/work/reproduce’, but rather ‘sources of identity and social markers’ – and the latter are primarily acquired in relation to kinship ideologies and practices. Through the example of the presented case study, it has become clear how important the focus on kinship is in order to understand the processes and significance connected to relationships of care among families and households in rural Mara. The example of the Mrungu family clearly demonstrates that relationships of care and support are embedded in family biographies and conflicts which often date back before the outbreak of HIV/AIDS and which are further complicated by a series of infections and deaths and the familial tensions which result from them. It is often a chain of illnesses, which, on the one hand, causes fatigue among the providers of care and, on the other, increases fear among the sick since they have seen how others were cared for and died. A sixty-year-old woman in rural Mara, who had nursed several of her adult children until their deaths and received very little help from her relatives, expressed it in the following manner: ‘My relatives are running away from me’, and continued, ‘I am staying with Jesus.’ Familial conflicts in situations of care can first of all be comprehended through ideologies of patrilineal kinship networks and relationships of belonging, which are constructed within extended families according to age and gender and which do not assess the responsibility for suffering relatives equally. In many instances it is the elderly female relatives, and especially the biological mothers, who assume the responsibility of caring for their dying children and whose services and emotional and material support are considered more or less self-evident. The wife or wives of a male lineage member, on the other hand, play often a marginal role in the care of their 117

DHansjörg Dilger husbands; a fact which can hardly be considered surprising since, according to my interviewees, a fundamental difference exists between the ‘love of a mother and the love of a woman who had been brought [i.e. married] through cows’. Expectations towards women who have married into their husband’s lineage may shift with the duration of marriage and the number of children which are born from this union; however, they are also structured by notions of shame and respect which often prevent wives from performing the intimate acts of caring and nursing which imply, amongst others, the washing of the naked body and the touching of private parts. In regards to the male members of the family, people in Mara tended to criticise husbands and their extended families who had allegedly ‘dropped’ their wives or sisters- and daughters-in-law when they get sick, often sending them back to their families of origin to be cared for and die. However, while such practices presented a moral challenge for individual patients and their families, they were also legitimized by the fact that women who had married recently and had no or only a few children assumed a marginal status in their husband’s lineages and still belonged partly to their families of origin. More serious, however, was the withdrawal of care and material support for a man by his brothers and father or the failure of these men to participate in their relative’s funeral, as in the case of the Mrungu family. Only with regard to the Luo kinship ideology, according to which a man’s brothers and his father8 must stand unconditionally by him, is it possible to understand that the extended family and the community judged such an act as an expression of contempt (kudharau) and as an unmistakable sign that the deceased was ‘split off ’ (ametengwa) from the family. Finally, care is embedded in kinship-based concepts of sickness and death, which not only allocate the blame for an illness from HIV/ AIDS in different directions, but also establish a close connection between individual illness episodes and whole family biographies. If a series of illnesses occurs in one family, the number of relatives who resort to other concepts of misfortune – such as witchcraft, chira or a curse – often increases. How meaningful these questions are often crystallises shortly before or after the death of a relative and strongly intensifies in significance, which is attached to the correct execution of burials in rural Mara. In the case of the Mrungu family, there was comparatively little tension in connection with burials; remark118

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ably, all deceased sons both returned to their home to die and were buried there. This pattern demonstrates the dynamics of the return of the dying to their home villages and their funerals on the family’s compound, as is presently performed by people in Mara. These burials are an expression of the concern that the spirit of a relative, who is buried ‘outside’, will return and could bring misfortune upon the family. Furthermore, through the social, cultural and ritual acts associated with a funeral and the subsequent period of mourning, the respect and care of relatives for a deceased person – and, more specifically, the physical and moral belonging of a man or a woman to their own or, in the case of wives, to their husband’s lineage – are expressed. In this context, the funerals at home become a public statement about a family’s respect for the late relative – a demonstration of respect which, under the very difficult circumstances of the care of persons sick with AIDS, cannot always be observed (see Dilger 2005, 2006).9 To conclude, I want to argue that the dynamics of care and kinship in the context of AIDS cannot be adequately understood if they are analysed only with regard to the provision of financial and emotional resources for sick and dying relatives, or by describing the specific acts of nursing and care given by members of a household in a situation of need. As this chapter has shown, relationships of care are embedded in a tight web of kinship obligations and of meanings and processes, which have to be situated in the often complex biographies of lineages and families as well as in the context of rural-urban dynamics and the political economy of healthcare in Tanzania. If exclusively isolated cases of care are examined with regard to specific household constellations at a given point in time, the historical dynamics of the AIDS epidemic – in which the individual and collective experiences with the illness are constantly changing in tandem to a series of cases of illness and death – are ignored. For a more thorough understanding of care, it is essential to explore in detail all those meanings and practices that surround families’ current struggles over illness, death and the continuity of life in which the need to care for the sick – as well as the increasing exhaustion of the caregivers and the concerns of those for whom care is being given – are embedded in the political economies of healthcare in Tanzania and in the social and cultural processes, through which moral and familial attachments, as well as the past and the future, are being negotiated. 119

DHansjörg Dilger Epilogue Since 1999 – when I first started my fieldwork on care and support systems in rural Mara – the larger context of HIV/AIDS-related caring and nursing in Tanzania has changed. The most detrimental effects of structural adjustment policies were modified by the reconfiguration of international development strategies and a series of health sector reforms, including the introduction of the budget funding system; the strengthening of the national government’s role in planning and coordinating development activities; and the launching of a debt relief scheme by the World Bank, the IMF and the European Union in 2005. Also in 2005, the Tanzanian government released revised guidelines for home-based care and voluntary testing and counseling which provided detailed instructions for the training of home-based care workers; record keeping by caregivers; the confidentiality and disclosure of HIV test results; and the mandatory infrastructure for VCT sites (The United Republic of Tanzania 2005a, 2005b). Finally, Tanzania started its roll-out of antiretroviral medications in 2003, largely with the support of the President’s Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, Tuberculosis and Malaria. In 2006, 200 treatment sites were providing free ART, and in 2007, 59,300 HIV positive adults and children were on treatment with the new medications.10 While changes in the field of antiretroviral treatment have come about rapidly, it remains to be seen how these changes are going to affect the situation of people living with HIV/AIDS in rural areas. When I visited the Mara Region in July 2006, many patients who were enrolled in the local ART program were still hiding their diagnoses from their families and the community. Some preferred to enroll in treatment programs at distant hospitals where nobody knew them and where they picked up their medications on a monthly basis. A central problem for those who had managed to get enrolled in the ART program was the strong side-effects of the medications and the challenge to procure daily a balanced diet. While people in Mara were struggling with the new challenges presented by ART, the new medications arrived too late for Masanja, one of the sons of the Mrungu family. In November 2006, I received a short text message from Tanzania announcing his death. In a phone call with a close friend, I was told that Masanja had been tested HIV positive at 120

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the local hospital and that he had also started treatment with ARV a couple of months before his death. Unfortunately, however, the infection was already in an advanced stage, and Masanja finally succumbed to his illness. The death of Masanja revived the conversations about the afflictions and deaths in the Mrungu family. While some accepted the fact that Masanja had died from HIV/AIDS, others remained doubtful and reconsidered some of the earlier explanations for the repeated deaths in the lineage. Chira was comparatively insignificant in these discussions: earlier concerns in this direction had been allayed by the fact that Mama Samson and her co-wife had been ‘ritually cleansed’ (wamerithiwa) after one of the burials in the extended family. What weighed stronger, however, was the assumption that Masanja’s death was due to a curse which had been placed on the family as a result of the father’s drinking habits. Parts of the lineage, therefore, placed increasing pressure on the eldest son of the family to perform a ritual which was to appease the father and which might help to avert further afflictions in the family. Thus, while the roll-out of ART in Tanzania seems to have occurred at a rapid pace – and has brought about significant changes for the lives of many HIV-infected people and their families – other families continue to struggle with the challenges of finding meaningful explanations for the suffering and deaths of their relatives and the disturbing question of how individual and collective well-being can be secured on a permanent basis.

Notes Funding for my various research trips has been obtained by the German Research Foundation (DFG), the Heinrich Böll Foundation and the University of Florida. I would like to thank the Commission for Science and Technology in Tanzania (COSTECH) for the granting of a research permit. I would also like to thank Renata Serra for having read and commented on an earlier version of this text. 1. http://www.tanzania.go.tz/health.html (accessed on 17 April 2007). 2. http://www.who.int/whosis/database/core/core_select_process.cfm?countri es=all&indicators=nha. (Last accessed on 5 August 2007). 3. Tanzania’s national HIV prevalence has increased from 0 per cent in 1981 to a peak of 8.1 per cent in 1995, and gradually decreased to 6.5 per cent in 2004. AIDS deaths in the country are projected to reach 120,000 deaths 121

DHansjörg Dilger 4.

5.

6.

7. 8. 9.

10.

per year in 2010, with more than half of these deaths (58.3 per cent) occurring among women (Somi et al. 2006). Research in Tanzania was carried out during several stays between 1995 and 2006 (altogether 22 months). Between 1999 and 2003 – the period which is the focus of this chapter – I studied relationships of care and support in extended kinship networks in the Mara region, as well as through observations at NGOs and in a Pentecostal church in Dar es Salaam (Dilger 2005, 2006, 2007). In 2006, I returned to Tanzania for a brief visit focusing on the introduction of antiretroviral treatment and the growing presence of neo-Pentecostalism in the country. Speaking of people in Mara as ‘the Luo’ does not mean that life in the research area is not shaped by considerable social and economic differences which are based on relationships of gender, age and socio-economic status. However, my informants usually referred to the ‘Luo way of life’ or to ‘Luo traditions’ (Kiswahili: mila ya Wajaluo) when explaining how individual and collective behaviours are shaped in the context of HIV/AIDS and modernity; this emic category is therefore adopted for the following analysis. In patrilineal kinship networks in Mara the terms ‘father’ and ‘brother’ refer not only to biological parents and siblings, but also to the brothers of the biological father and their respective sons. Similarly, the wives of the father’s younger and elder brothers are referred to as ‘little’ (mama mdogo) and ‘big mothers’ (mama mkubwa), respectively. For a more detailed discussion on the methodological and ethical challenges of ethnographic fieldwork on HIV/AIDS, see Dilger forthcoming. See note 6. Family discussions about burials – and particularly about the question of where a burial is to take place – are again highly gendered. On the liminal status of (young) women in patrilineal kinship networks in Uganda and the challenges this liminality entails for their burials in the time of AIDS, see Whyte 2005. http://www.pepfar.gov/press/81642.htm (last accessed on 8 August 2007). Given that an estimated number of 315,000 HIV infected people were in need of treatment in 2005 (http://www.who.int/hiv/HIVCP_TZA.pdf, last accessed on 8 August 2007), almost 19 per cent of them were treated by 2007.

Bibliography Barnett, T. and A. Whiteside. 2002. AIDS in the Twenty-First Century. Disease and Globalization. Houndmills: Palgrave Macmillan. Boller, C., et al. 2003. ‘Quality and Comparison of Antenatal Care in Public and Private Providers in the United Republic of Tanzania’, Bulletin of the World Health Organisation 81(2): 116–22. Dilger. H. 2005. Leben mit AIDS. Krankheit, Tod und soziale Beziehungen in Afrika. Eine Ethnographie. Frankfurt a.M.: Campus. 122

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———. 2006. ‘The Power of AIDS: Kinship, Mobility and the Valuing of Social and Ritual Relationships in Tanzania’, African Journal of AIDS Research 5(2): 109–21. ———. 2007. ‘Healing the Wounds of Modernity: Community, Salvation and Care in a Neo-Pentecostal Church in Dar es Salaam, Tanzania’, Journal of Religion in Africa 37(1): 59–83. ———. Forthcoming. ‘Contextualizing Ethics in AIDS Research: Or, the Morality of Knowledge Production in Ethnographic Fieldwork on “the Unspeakable”’, in W. Geissler and S. Molyneux (eds), The Ethnography of Medical Research in Africa. Oxford: Berghahn Books. Femina HIP, Tanzania. 2006. Kuishi kwa matumaini na virusi vya ukimwi. Dar es Dalaam. Ferguson, J. 2006. Global Shadows. Africa in the Neoliberal World Order. Durham: Duke University Press. Guyer, J. I. and P. E. Peters. 1987. ‘Conceptualizing the Household: Issues of Theory and Policy in Africa’, Development and Change (special issue), 18(2): 197–213. Harrington, J. A. 1998. ‘Privatizing Scarcity: Civil Liability and Health Care in Tanzania’, Journal of African Law 42(2): 147–71. Heald, S. 1995. ‘The Power of Sex: Some Reflections on the Caldwells’ “African Sexuality” Thesis’, Africa 65(4): 489–505. Iliffe, J. 1998. East African Doctors. A History of the Modern Profession. Cambridge: Cambridge University Press. Katapa, R. S. 2004. ‘Caretakers of AIDS Patients in Tanzania’, International Journal of STD and AIDS 15(10): 673–78. Mamdani, M. and M. Bangser. 2004. ‘Poor People’s Experiences of Health Services in Tanzania: A Literature Review’. Retrieved 18 April 2007 from http://www.womensdignity.org/ Peoples_experience.pdf Ngalula, J., et al. 2002. ‘Health Service Use and Household Expenditure during Terminal Illness due to AIDS in Rural Tanzania’, Tropical Medicine and International Health 7(10): 873–77. Nkya, L., et al. 1995. ‘Evidence of Behavioral Change in Prostitution Population in Morogoro, Tanzania’, AIDS Captions 2: March. Nnko, S., et al. 2000. ‘Tanzania: AIDS Care – Learning from Experience’, Review of African Political Economy 27(86): 547–57. Samba, E. M. 2004. African Health Care Systems: What Went Wrong? Retrieved 18 April 2007 from http://www.afro.who.int/regionaldirector/emeriti/samba/ reports/index.html Sarikaeli, E. 1996. ‘AIDS and Changing Traditional Care Practices in Dar es Salaam’. M.A. dissertation. Dar es Salaam: University of Dar es Salaam. Somi, G. R., et al. 2006. ‘Estimating and Projecting HIV Prevalence and AIDS Deaths in Tanzania Using Antenatal Surveillance Data’, BMC Public Health 6: 120. Thomas, F. 2006. ‘Stigma, Fatigue and Social Breakdown: Exploring the Impacts of HIV/AIDS on Patient and Carer Well-Being in the Caprivi Region, Namibia’, Social Science and Medicine 63(12): 3174–87. 123

DHansjörg Dilger UNAIDS. 2000. Caring for Carers. Managing Stress in Those Who Care for People with HIV/AIDS. Geneva: UNAIDS (Best Practice Collection). United Republic of Tanzania, The. 1999. Guidelines for Home Based Care

Services. Dar es Salaam: National AIDS Control Programme. ———. 2001. HIV/AIDS/STI Surveillance Report (Report No. 16, January - December 2001). Dar es Salaam: Ministry of Health, Tanzania (Mainland), National AIDS Control Programme. ———. 2005a. Guidelines for Home Based Care Services. Dar es Salaam: National AIDS Control Programme. ———. 2005b. National Guidelines for Voluntary Counseling and Testing, 2005. Dar es Salaam: National AIDS Control Programme. Urassa, M., et al. 2001. ‘The Impact of HIV/AIDS on Mortality and Household Mobility in Rural Tanzania’, AIDS 15 (15): 2017–23. White, L. 2000. Speaking with Vampires. Rumor and History in Colonial Africa. Berkeley: University of California Press. Whyte, S. R. 1990. ‘The Widow’s Dream: Sex and Death in Western Kenya’, in M. Jackson and I. Karp (eds), Personhood and Agency. The Experience of Self and Others in African Cultures. Uppsala: Almquist and Wiksell International, pp. 95–114. ———. 2005. ‘Going Home? Belonging and Burial in the Era of AIDS’, Africa 75(2): 154–70.

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II Moralities at Stake

DChapter 6 The Social History of an Epidemic: HIV/AIDS in Gwembe Valley, Zambia, 1982–2004 Elizabeth Colson

The Context Much said here will resonate with what has happened and is happening elsewhere in Africa, but I am dealing with the impact of AIDS at a particular place and time: the Gwembe Valley of Zambia’s Southern Province in the years 1982–2004. For data, I draw upon the Gwembe Long-Term Study initiated in 1956, long before AIDS was known (Scudder and Colson 1979, 2002; Cliggett 2002). In the slightly over twenty years since the mid-1980s, when Zambians, including the people of Gwembe Valley, first became aware of a new threat to their existence identified under the acronym AIDS, they have gone through a series of responses, including denial – denial that AIDS existed in their country and then denial that one’s own or one’s kin’s illnesses could be due to AIDS. Denial meant various things, including a refusal to give up hope of a cure, and this in turn justified the continued search for a cure. As long as it was possible to cling to denial, illnesses associated with HIV/AIDS were likely to be identified as previously known illnesses. Indeed, many were previously know illnesses, taking advantage of impaired immune systems. If they were not identified as AIDS-related illnesses, they raised no particular new moral issues, even though episodes of illness were recognised as costly in terms of medical fees and the loss by patients 127

DElizabeth Colson and caretakers of wages or other productivity. This was nothing new. Illness was a fact that had to be faced like other difficulties that required decisions about what people could do under given circumstances. Very often this meant a balancing of various obligations, not all of which could be met at the same time. From the beginning, responses to AIDS were affected by the fact that it was only one of many difficulties to be contended with during the last decades of the twentieth century and the early years of the twenty-first. The epidemic emerged when Zambia was already in trouble. The national economy, dependent on copper exports, declined when copper prices fell on world markets in 1973 while prices of imports rose rapidly. Then, beginning in the 1980s, the economy was affected by structural adjustment programs urged upon a now indebted country by the World Bank and the International Monetary Fund. The public health system was one victim of the economic decline and structural adjustment. Retrenchment here coincided with emergent drug resistance of various diseases, including malaria and tuberculosis. In the same years, drought became more frequent, a consequence of world-wide climatic change. This meant more years when survival depended on access to imported food and people still went hungry.

Moral Dilemmas My understanding of Gwembe Tonga responses to the epidemic, as to other difficulties, is influenced by exposure over 50 years to their beliefs about the human condition. First, they stress the importance of personal autonomy. They do not like to be told what to do. People should make their own decisions. But in doing so they should take into account what can be summed up as a moral order. This means that they are expected to give consideration to how their freedom of action is restricted by their obligations to others, including the obligation to share. In practice, this usually means obligations to kin. But the ramifications of kinship create a great many competing claims. One of the arts of Gwembe life involves creating claims on others that they can be shamed into acknowledging while, at the same time, avoiding claims others have laid upon oneself. People in the Valley have always known that life is difficult. They were accustomed to drought years, and food shortages as well as epi128

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demics characterise the first half of the twentieth century. Both food shortages and epidemics can create moral dilemmas, but, on the whole, the Gwembe people are realistic pragmatists who try to meet obligations when they can but know that on occasion they will fail and then must live with the knowledge of failure. Village memories include much that is grim. Most families have secrets that should not be mentioned, for village society depends upon a willingness to recognise that even if people behave badly on occasion, they remain members of the local community. In the years of hunger, people may be forced to triage and decide who should be fed and who go hungry (Colson 1979). In the 1940s, while working on the nearby Plateau, I knew women who had been sold as children by their Gwembe kin in return for grain to feed their elders. Even in the 1980s and 1990s, people whispered of elderly men and women or someone badly disabled, having been allowed to starve during bad years and of people who survived through theft of the scanty food resources of kin and neighbours. People thought this shameful, but understandable (see also Cliggett 1997: 111–12). Decisions about whom and when to help were based on premises other than the Western premise that life must be preserved at all costs. In the past, people decided who should live. Children born with obvious disabilities, along with those regarded as anomalies, were either killed at birth or simply allowed to die. I have known elderly Gwembe Tonga deplore the use of drastic measures such as incubators to keep premature babies alive. Better, they said, for the weak to die and the parents try again to produce viable children. One elder summed it up: ‘When we plant, we plant several seeds and then keep only the strong plant’. The very ill might also be left untreated on the premise that death was inevitable, and the very ill might decide to hasten death by refusing food and water and have their decision respected. Against this was the fear that the dead who had been neglected by their kin would become ibandwa, vengeful spirits, intent on punishing bad treatment during life or the failure to provide proper mourning after death. People would probably agree that one is obligated to assist kin who are ill and participate in mourning both kin and neighbours. The obligation to help pay for a cure, if cure seemed probable, was recognised though not always met. It was also difficult to refuse help even on the grounds that the case was hopeless because this opens 129

DElizabeth Colson one to a charge of witchcraft: only a witch can confidently know the future. The obligation to feed and care for the ill existed even though the case was hopeless, but people still had to decide whom to help and how much to give. Rarely have they had the luxury of being able to afford infinite compassion. The sense of obligation was tempered both by the nearness of ties of kinship and by an appreciation of help received in the past or expected in the future. Even though many were Christians by the end of the twentieth century and aware of church teachings on the sacredness of all human life, they still had to allocate scarce resources among the many claims. The obligation to nurse the ill and dying fell upon matrilineal kin. When health centres and hospitals were established, kin were still expected to accompany and nurse those admitted. Only lineage kin, or perhaps a man’s children, could be expected to nurse someone no longer able to take care of bodily functions, though sometimes wives cared for incontinent husbands. Contact with excrement was regarded as highly distasteful. Nevertheless, people did nurse ill and dying kin for various reasons: empathy, fear of spiritual retribution after death, or concern for reputation since neighbours judged even if they did not hold kin to account. Support for those ill and in need, therefore, as well as participation in funerals, was and is based on complex considerations that give rise to many possibilities for anxiety, discontent and a sense of exploitation on the part of both those who give and those who receive. If adequately fulfilling obligations to both the living and the dead is impossible, it is appropriate to make a gesture indicating a desire to do one’s duty. Debtors acknowledge their debts even if they do not pay them, just as people may provide only a token acknowledgement of their obligations to the spirits of the dead when they can do no more. In a year of famine when there is no grain for brewing yet a divination finds that a spirit is demanding beer, a little grain can be put to soak and an offering made with that water while the spirit is informed that beer will be offered when it is possible to brew it again. Or someone living in an urban area, where offerings cannot be made, pours water beside a tree at the edge of town, while assuring the spirit that beer will be provided on return to the village. So, too, care for the ill may be minimal, a token of what one might do in other circumstances.

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For most Gwembe people, life involves frequent compromises, between what ought to be done and what is actually possible. Responses to the AIDS epidemic involved such compromises. The help people gave varied from case to case and reflected knowledge of HIV/AIDS, appraisal of resources available for underwriting treatment or to comfort a patient who was ill and dying, an evaluation of the likely outcome of treatment, fear of becoming infected, fear of being stigmatised by the community if the illness was identified as AIDS, and fear of vengeance if a spirit departed life angered by neglect. With the massive flocking to churches in the 1990s, asssistance to those identified as ill with AIDS and their caretakers and other close members of their families was affected by the teaching of church leaders, especially those of some of charismatic churches who preached that HIV/AIDS is God’s punishment for sin or due to Satan and thus a self-inflicted evil. For a decade or more after AIDS was first identified, many considerations discouraged people from being willing to label an illness as AIDS-related whether it was their own or that of a kinsperson. Whatever else they knew about HIV/AIDS in those first years, people heard early on that a diagnosis of AIDS was tantamount to a death sentence. In Zambia, in fact, death usually occurred within two years after the first appearance of full-blown AIDS (Webb 1997: 4). People were also told that HIV/AIDS was spread through sexual intercourse, assumed to be illicit, with the implication that the one afflicted was responsible for the illness and the problems this caused others. When the ill denied that they had AIDS, they denied both that responsibility and their own imminent death. Refusing the label and looking to other diagnoses with a better outcome justified requests for help and the use of family resources for a member seen as temporarily in need of support. By the end of the twentieth century, denial began to break down in the face of the massive epidemic and the diagnostic skills acquired through experience. People began to live with the knowledge that they could do nothing to bring about a cure. Then, in the early twenty-first century, the arrival of ARV therapy brought new dilemmas, for the cost was prohibitive for all save the rich or the powerful. The remainder of this article looks at these developments more carefully within the time frame 1982 to 2004.

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DElizabeth Colson The Onset On returning to Zambia in 1982, I was puzzled at the number of deaths since my last visit, in 1978, among men who had been boys when I worked on the Plateau in the 1940s. Many were said to have died of pneumonia. The late 1970s and early 1980s were hard times in Zambia, but that hardly accounted for the death of so many men at a time of life when few deaths were expected. Neither I nor probably anyone else in Zambia then knew anything about AIDS: it was only late in 1982 that I saw reports in American newspapers and journals dealing with unusual physical symptoms and an unusual number of deaths among young men in the United States. Shortly thereafter, the acronym ‘AIDS’ was introduced to designate the phenomenon, but biomedicine was still uncertain about how it had originated, how it spread and who might be at risk. The HIV retrovirus was not identified until the following year (Webb 1997: xi). Since the early reports cited a form of pneumonia as one of the AIDS-associated illnesses, I thought that here might lie an explanation for what had seemed to me an abnormal number of deaths among middle-aged Tonga-speaking men and perhaps also for more frequent references to cases of tuberculosis when tuberculosis had seemed largely under control by 1972. I now suspect that many in Southern Province in 1982 already harboured HIV and that the reported deaths in the late 1970s or early 1980s represented the beginning of mortality due to HIV/AIDS. No doubt it also signaled increasing morbidity, as various diseases attacked immune systems already compromised. The timing is not unlikely. Lwanda, extrapolating from later rates, believes that HIV reached Malawi about 1977 and was implicated in the observed increase in unexplained deaths of urban youths in the early 1980s although the first hospital diagnoses in Malawi came in 1985 (2004: 35). But in 1982, neither Plateau nor Gwembe Valley people voiced any suspicion that they faced a new threat or were involved in measures to combat it. This was very unlike their response to the influenza epidemic of 1972 when they mobilised as communities to drive out the illness. Nobody dwelt on symptoms later regarded as indicative of AIDS, such as swollen legs, emaciation and diarhoea. Emaciation and diarrhoea were present, but emaciation was associated with a shortage of food due to poor harvests, low wages or unemploy132

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ment, and diarrhoea was associated with dysentery, long common to the region, just as pneumonia had long been common. These were old problems. They were known to respond to treatment, and were dealt with either by old African remedies or by a resort to biomedical treatment at hospitals and rural health centres even though the decline in the Zambian economy was already beginning to affect the quality of care and availability of medicine at the centres. If people were perplexed by the larger number of deaths and greater number of illnesses, they did not say so. Therefore, in Gwembe Valley, as in the West, the first impact of HIV/AIDS went largely unnoticed at the conscious level, though it may have heightened the general unease of the early 1980s and helped to trigger the spate of witchcraft accusations and the summoning of witchfinders that occurred throughout Southern Province in 1981 and 1982 as neighbourhood after neighbourhood tried to identify and nullify the witches who caused illness and death (Colson 2000). More likely people were responding to the general economic and political malaise that affected Zambia, including Southern Province, from the mid 1970s, which they found all the more bitter because it followed on the economic buoyancy and ebullient expectations of a better life associated with the coming of independence in 1964. In 1982 people seemed more deeply depressed about their circumstances than they were even after their forced resettlement when the Kariba Hydroelectric Dam on the Zambezi River flooded much of their former territory in 1958. They were bitter that their hopes were being frustrated and some said, ‘We black people can do nothing.’ They talked of the scarcity of jobs and commodities, the decline in government services and the bleakness of the foreseeable future. It was to these problems that Scudder attributed ‘the community unravelling’ he perceived at that time (1983, 1985). The early 1980s was also a time of drought, which meant hunger and dependence on imported grain. The AIDS epidemic was too insidious to be a major cause of concern, especially in view of all else that frustrated hope and raised anxiety.

Growing Awareness After 1982, the Gwembe people, like their contemporaries elsewhere in the world, went through phases of denial and acceptance as knowl133

DElizabeth Colson edge of HIV, its transmission and its effects upon the human body became available and spread. Schoepf (2004: 20, 22) reports that most African countries went through similar stages of denial early in their experience of the epidemic. The warnings, largely stemming from the United States and Europe, that began to circulate in the late 1980s gave people little information on how to act due to early uncertainty among biomedical workers as to whether they were dealing with one or a number of diseases, what the modes of transmission might be and probable prognosis. Schoepf also points out that the lengthy incubation period between infection and first physical symptoms encouraged uncertainty and made it difficult for people to accept that someone who looked healthy already carried a fatal infection that could be transmitted to others and would end in death within a few years. Zambians may have been inclined to give earlier credence to the reality of AIDS than people elsewhere in Africa because their president, Kenneth Kaunda, in 1988 openly acknowledged the death of his son as due to AIDS. Speaking on Radio Lusaka, he warned people of the need to take precautions against infection. But most Gwembe people still thought that even if the threat was real, it was unlikely to affect them. AIDS was something that happened in other countries or elsewhere in Zambia. However, in 1987 people had already begun to ask if I had heard of a new disease and if it was present in the United States. In 1987 I recorded the first known deaths from AIDS in our longitudinal sample population, which includes all resident in four Gwembe villages in 1956–57 and subsequent census years, whether they remained residents or moved elsewhere, and their descendants (Clark et al. 1995). These deaths were of two men in their early thirties who had attended secondary school and then worked in Lusaka where they were treated and diagnosed at the University Teaching Hospital. I learned of the diagnoses from their friends who saw the hospital records. At that time, Zambians still had access to free medical care. For many, especially in urban areas, the first choice of treatment was biomedicine, dispensed at government hospitals or health centres. However, they might also use home remedies, visit an African practitioner or consult diviners to discover if the underlying cause of an illness might be in witchcraft, the anger of the spirits of the dead over neglect, or spirit possession. 134

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Mothers of the men and others in the village did not associate their deaths with AIDS even though by 1987 people had begun to talk of illnesses and deaths – especially among young, educated urban elite – from what some called ‘slim disease’, though the word AIDS had already entered the national vocabulary. Some at least knew that there was no known cure for the condition even if particular manifestations might be temporarily overcome. They knew that it was said to be transmitted through sexual intercourse but found this difficult to accept. For one thing, they were long familiar with sexually transmitted diseases introduced through labour migration and knew these could be cured with antibiotics. There was also the fact that some people who were known to have had numerous sexual partners remained healthy. By 1990, 99 per cent of both Zambian urban and rural women, irrespective of province, who were interviewed for the Zambian Demographic and Health Study (DHS), reported that they had heard of HIV/AIDS. Furthermore, 90 per cent knew that AIDS was transmitted through sexual intercourse. Fewer knew that AIDS could be transmitted through shared needles or razor blades or blood transfusions, or that it could be transmitted from mother to child (DHS 1992). Gwembe women can be assumed to have been as well informed as women interviewed for the study because they attended health centres and the majority of them had lived for a time in town or paid protracted visits to city-based kin, often while in search of medical treatment. Some were traders who sold rural produce in urban markets. By the 1990s, Zambia had become a single pool with respect to disease and knowledge of disease. By 1992, a major impact of AIDS on the population in the Gwembe longitudinal study was evidenced by the many reports of illnesses and deaths. Questions about people in the sample frequently brought the answer that they were being treated by an African practitioner though the nature of the illness was left unidentified. By then, identification of particular illnesses was affected by the fact that HIV/AIDS had become a stigmatised and stigmatising condition. Whatever knowledge people displayed of HIV/AIDS in the abstract, they were rarely prepared to admit that they themselves or any of their kin might have AIDS, nor usually did they speak of fellow villagers or other close associates as ill from AIDS though they might use various circumlocutions: ‘he has swollen legs’, ‘he is very thin’, ‘some might say it 135

DElizabeth Colson looks like AIDS’, or ‘it is a long illness’. The common attitude was shown by a middle-aged man who commented, ‘AIDS is very bad and is killing many people in Zambia, but not here in our village. The only cases are of a teacher and his wife and then there was a man in the next neighbourhood. Nobody from right here.’ I asked how he knew this and was told ‘Nobody has died or been ill’, and then when I cited various recent deaths, the response was ‘Oh, they were bewitched.’ In the same year a woman said, ‘My husband is always having women in the bush and I am afraid he will bring AIDS, but no one in the village has AIDS. Not right here. Only a couple of people in the next village.’ Very privately, people might be franker as was the woman who told me that her brother, a secondary school graduate working elsewhere, had died of AIDS. His father said he had been bewitched, but when I asked another villager if this was a witchcraft death, he said ‘No, it was AIDS. If someone dies of AIDS, it is because he has gone with a woman. He brought it on himself. It is nothing to do with witchcraft.’ By 1996, people commonly attributed the illnesses and deaths of fellow villagers as well as those in other villages to AIDS, but they were still likely to give other diagnoses when kin showed the same symptoms. At a funeral held in 1996 for a man who had died in the city of what many said was AIDS, his father (a worker at the local health centre and somewhat versed in biomedicine) mourned, ‘He was most schooled. He had a good job. He was an important person in the airline. So the people there got jealous and killed him with witchcraft.’ Only in 1998, did I hear men and women regularly attribute AIDS to kin, and then it was usually only if they were living in different homesteads. By 2001, denial had become impossible. Given that people by the late 1980s showed considerable knowledge of AIDS and its manifestations, the long-maintained determination of those affected and their supporting kin to cling to other diagnoses needs explanation. Recognising symptoms associated with tuberculosis, malaria, or dysentery or some other condition long familiar to them, they diagnosed an illness as an already known disease, as indeed it was, and treatable by biomedicine, for they knew from experience that antibiotics had brought cures for tuberculosis, dysentery and pneumonia. Then when biomedicine failed to provide a permanent cure, it was common to claim that biomedicine was mistaken about the condition and lacked knowledge of how to treat it. 136

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What biomedicine called AIDS, many said, was an illness previously known to Tonga-speakers as kahungo or chihungo, acquired through contact with a woman who had not been purified after miscarriage or still birth, and its treatment was known to some practitioners of African medicine (Mogensen 1995). In a search for better biomedical treatment, people might move from rural health centres with their limited resources to nearby hospitals, or to the University Teaching Hospital in Lusaka, or consult some of the private clinics beginning to appear in large urban centres where biomedical treatment could be obtained by those with enough money. They also moved around the countryside in search of an African practitioner who might have effective medicine for the condition, sometimes on the advice of workers at the health centre who said this was a matter for African rather than European medicine. Treatment by an African practitioner might cost substantially more than the fees paid to health centres and government hospitals, but so long as they had funds and some confidence in the treatment people were prepared to pay. Some used every resource available: biomedicine to treat particular manifestations and African medicine to banish the disease itself. In appraising early reactions, it is important to remember that many of the first Gwembe AIDS patients known to me were members of the educated elite who were likely to look to biomedicine for cure. Unlike those maturing in the early twenty-first century, they grew up in a Zambia where immunisation of children, beginning in the 1960s, controlled many childhood diseases; malaria had been practically eliminated in the 1960s and early 1970s through the use of DDT; antibiotics rapidly cured previously intractable ailments including tuberculosis, even leprosy was being successfully treated; mortality rates had fallen drastically and life expectancy was steadily rising. By the mid 1980s, however, the antibiotics and anti-malarial drugs which had given biomedicine its high status in the 1960s and 1970s were less effective as drug-resistant strains began to appear. Then when biomedicine could implicate AIDS in an illness and provide information on one’s HIV status but had no cure, people preferred to trust in African resources, which they knew had provided effective treatment for some conditions in the past. The diagnosis and prognosis provided by biomedicine which gave no hope of cure, were repudiated, and support was sought elsewhere among practitioners of African medicine including those who claimed to heal 137

DElizabeth Colson through the use of new forms of spirit possession (Luig 1999: 136). It was not until 1996 that I heard people, whose children had already died after a search for treatment, comment that a practitioner of African medicine claiming to cure was lying and only wanted money. They might still clutch at hope by claiming that an illness involved witchcraft and a cure was possible if the witch could be identified and forced to counteract his attack. At this stage, it was common to hear people say that if witchcraft were involved, then it could not be AIDS, whereas if AIDS were involved it could not be witchcraft. In 1996, most funerals still involved a consultation with a diviner as to the cause of death, and now for the first time I heard divinations attributing death to AIDS rather than to witchcraft or the ancestors. Mothers especially might refuse to accept such a divination and continue to blame witchcraft. In 2001, a headman bluntly said, when asked about a death divination, ‘Nothing to find. It was a disease from people. Nobody killed them. Just a death from people.’ This followed a rising fear of witchcraft during the 1990s as people became subject of multiple anxieties including those associated with HIV/AIDS. The young, especially in rural areas, believed themselves exploited by senior kin who worked them hard without sufficient reward and were intent on enriching themselves through medicines that drained the life force of others. They retaliated by summoning a witchfinder to detect and destroy the charms of an individual suspect or to cleanse an entire village or neighbourhood of its witches. Such treatment, too, came at a cost, usually of 4 cattle or their equivalent for each witch identified and cleansed, but hope justified the expense (Colson 2000). After witchfinding had been tried and people continued to fall ill and die, other possibilities were offered. At the end of the 1990s, people began to speculate that HIV/AIDS was a punishment for their neglect of old rituals and taboos which had kept them in harmony with the spirits of the dead and the spirits associated with the land. Many believed that it might be wise to reinstitute neglected traditions. An elder in Gwembe South remarked, ‘The young people just wanted to do things on their own, but then they had all these deaths and when they go for a divination, they find it is because they have given up the old ways and so they are thinking of starting again.’ Meantime, in Gwembe Valley, as elsewhere in Zambia, beginning in the 1980s but escalating in the late 1990s, there was extensive ex138

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perimentation with newly arrived charismatic churches, many originating in the United States. While these may preach that AIDS is punishment for sinful sexual activity or is sent by Satan, they also preach that a strong enough belief in Jesus, frequently assessed by a willingness to contribute to the finances of the church, can heal any illness as well as bring prosperity in this world. Some church leaders claimed to heal through the laying on of hands (Hinfelaar 2004: 309, 332; Kirsch 2004). In a search for healing, people moved from church to church much as they did in exploiting the possibilities of different kinds of medicine. Despite disillusionment with various possible cures and widespread knowledge of the outcome of AIDS, through the 1990s people clung to hope and continued to pay what they could for whatever promised a cure, even at the expense of food, clothing or school fees for children. By the first years of the twenty-first century when ARVs began to be available, many families had little left to pay for further treatments or for treatment of new patients. They were also weary of death and mourning. Assistance at funerals had noticeably declined, and when asked about this, people shrugged and said ‘People are tired out from all these funerals.’ In the years before ARVs became available, the biomedical establishment and its allies, the international charitable agencies, were unable to offer hope to those infected. Instead, they expended their resources in fostering educational programmes on how HIV/AIDS is transmitted, the need to adopt safe sex through limiting the number of partners and the use of condoms made available through health centres, and more recently combating the stigmatisation of those with HIV/AIDS and their close associates. Information was transmitted via television or radio and newspapers or through public meetings, often associated with the performance of dramatic skits showing how to avoid infection. Such programmes aimed at containing the epidemic by changing behaviour to prevent infection, disregarding evidence that by the late 1990s they were preaching to those who had already heard and did not want to listen to further messages assuring them that if they were already infected, as many suspected they might be, they were doomed to early death. In these circumstances, the informational programmes were more effective in adding to the anxieties of those who heard them than they were in altering behaviour with respect to sexual activity. 139

DElizabeth Colson Gwembe people regarded sexual activity as a pleasure. Most men, whether single or married, thought it enjoyable to engage in affairs, and even married women might have lovers. With the emergence of townships around administrative centers, mines, fishing camps and transit points from the 1960s on, some women had been drawn into prostitution serving both transients and village men. Condoms, if available, were unpopular, in part because they were said to lessen sexual satisfaction, but also because some churches preached that their use was both sinful and dangerous to health. This preaching may have had greater impact than preaching about the sinfulness of sexual relations outside marriage. The incidence of HIV infection began to fall nationally in the early twenty-first century, and probably also within Gwembe Valley although we cannot demonstrate this and can only speculate about why it might be so. Some aspects of sexual behaviour did begin to change by the mid to late 1990s. It is doubtful how much national campaigns were implicated in this and how much was due to the intimate knowledge Gwembe people had acquired through watching their fellows fall ill, become dependent and die. In the late 1990s, the ritual purification of survivors from death pollution, which involved sexual intercourse, began to be altered or eliminated under pressure from surviving kin intent on protecting themselves from infection. This happened even before Gwembe chiefs were induced to ban the sexual purification of widows in the early twenty-first century. Increasingly, if AIDS was implicated in a death, surviving spouses were suspect of being infected even though they might appear to be healthy, and the inheritance by matrilineal kinsmen of widows began to be avoided. In other circumstances, however, risks continued to be taken, even though by now people said openly that they did not want the burden of care for those who knowingly placed themselves at risk (Colson 2004).

Living with Stigma HIV/AIDS has carried stigma since the late 1980s, and stigmatisation may have increased as fear of infection has increased. While people know that AIDS is sexually transmitted, they also think it can be transmitted through contact with items used by one infected or through contact with the blood or other body fluids of those infected. 140

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Research teams in Southern Province have found people trying to distance themselves from those thought to be infected with HIV even before AIDS symptoms appear, and from those closely associated with them (Bond et al. 2002; Nyblade et al. 2003). This means that those infected and their kin, even when they recognise an illness as AIDS-related, usually persist in public denial. Few, as late as 2004, wished to know their HIV status. This added to the burden of anxiety attached to AIDS since people lived with the knowledge that they might be mingling with the infected. Stigmatisation originally may have been influenced by knowledge that AIDS was stigmatised in Europe and the United States, standardsetters for many Zambians, especially the young educated elite (Ngulube 1989), but the association of AIDS with illicit sexuality and death also resonated with existing concerns about contact with pollution. Among Tonga-speakers, illicit sexuality and death were regarded as polluting. Those who came into contact with either could pass on the pollution if they were not properly cleansed. While carrying pollution, they were expected to observe various taboos to avoid transmitting the condition to others. With education and experience with antibiotics and other resources of biomedicine, fear of the old forms of pollution may have diminished or lapsed in the 1970s and early 1980s, only to be reinvigorated with the advance of AIDS. The arrival of ARV therapy created new dilemmas and new ambivalences about learning of the HIV status of oneself and others. In the first place, the cost of treatment was prohibitive for most individuals and their families. Even at the subsidised price available at one Gwembe hospital by 2003, the cost of treatment for one person exceeded what most Zambian families could pay, and a number of family members might have HIV. Drought years and crop failures continued into the early twenty-first century, and many families depended on international aid or went hungry. They had little or no surplus to spend. By 2004, 73 per cent of the Zambian population was estimated to live below the poverty line, up from 68 per cent in 2000, while malnutrition was said to affect 53 per cent of the population. Even in 2004, when international donors underwrote free ARV treatment for 100,000 Zambians infected with HIV, in a population with an estimated HIV incidence of 15.6 per cent among those in the 15 to 49 year age range (CBOH), there was no rush to discover 141

DElizabeth Colson HIV status or apply for treatment. Those who knew about the availability of free treatment, also knew that it was limited to a period of five years after which the cost would have to be met by individuals or by government. The treatment could have serious side effects. Enrollment for treatment was a public acknowledgement of HIV infection. And ARV treatment was a lifetime sentence rather than a cure. Most people in Gwembe Valley in late 2004 probably knew little about the availability of free treatment. Those who did, including health workers, were not necessarily eager to take advantage of it even though they might know or suspect that they themselves had HIV. They knew it unlikely that the government would or could pick up the tab after five years, or that they themselves could afford to do so, especially since salaries have not kept up with inflation and government was frequently in arrears in paying salaries of health workers, teachers and other government employees. Some said cynically that only those in powerful positions or their kin would receive treatment.

Living with AIDS pre-ARVs In 2004, the Gwembe people continued to deal with HIV/AIDS much as they had since knowledge of the condition first emerged: by denial if possible, with the use of biomedicine to cure opportunistic illnesses associated with AIDs when this was available, and/or by consulting African healers for a cure. The majority were likely also to search for underlying reasons why they themselves should be afflicted and find explanation in witchcraft, the anger of ancestors at the abandonment of old ways or failure to honour them, the invasion of new forms of spirits associated with the threatening international order, or, among Christians, God’s punishment for sin or the machinations of Satan. But given their current knowledge of diagnostic traits associated with AIDS and what these implied, it was difficult for people to deceive themselves about the nature of a case whatever they might say publicly. That AIDS-related illnesses signaled certain death was recognised by the 1990s, and people became generally knowledgeable about typical symptoms and modes of transmission. They were then able to diagnose the illness in others even though sufferers and their kin claimed

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a different origin. Denial was a refusal to accept a death sentence, as well as a continued claim to the use of resources in a search for a cure. At the same time, denial encouraged the stigmatisation associated with AIDS, for the nature of an illness became hidden knowledge not to be revealed to outsiders and therefore suspect. After the early 1990s, as the incidence of HIV infection rose and the number of those unable to work productively and in need of care grew, the stigma and fear of AIDS increased. Although there was widespread knowledge that HIV is spread through sexual intercourse and through the sharing of needles and razors, people also knew they could not predict who might become infected among the many who had multiple sexual partners or had been exposed to injections (once a favourite form of treatment). They knew, too, that a long time might elapse between infection and the appearance of the first symptoms. As one man said to me, ‘Anyone can have AIDS. You can’t know. I may have AIDS.’ Few in 2004 knew their HIV status. Many lived with the knowledge that they might already be infected. And they did not know who among their fellows was infected. All this led to a general sense of malaise, made no easier because of the difficult economic conditions under which people had lived since the late 1970s. Angry frightened people (whether they were patients, caregivers, or only worried about their own status) turned to blaming others as the witches who directed the infection and, by combating the witch, thought to rid the community of the disease. During the 1980s and 1990s, witch finding became endemic to Gwembe Valley as elsewhere in Zambia and throughout southern Africa. Payment to witch finders was a further drain on scarce resources but was acceptable as a means to at least temporary reassurance. In the meantime, international agencies and local NGOS, helpless to provide a cure, stressed the need to change behaviour to prevent further spread of HIV, urged people not to stigmatise those with AIDS, and began to provide some support for the large number of orphans whose plight became a subject of international discussion. Some of the church-based NGOS also provided a limited amount of support for the chronically ill. After 2000 they made available a limited supply of ARV drugs at low cost or, beginning in 2004, at no cost for a fraction of the infected population. What they could not do was make tolerable the circumstances under which those with AIDS were

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DElizabeth Colson usually cared for or provide the kinds of resources in food and other comforts known to prolong working life and delay the onslaught of AIDS among those already infected with HIV (Guest 2003). HIV spread at a time when economic conditions had undercut the resources needed to ease the impact of the epidemic upon those infected and those who must care for them. Government support for the health system was radically cut in the 1990s, partly due to the demands of structural adjustment programs which ignored basic needs. Then people were expected to pay fees for previously free services at a time when medical supplies were frequently lacking and medical personnel were disappearing as doctors and nurses took jobs outside the country. Sanitation, including clean water supplies, was probably poorer in 2004 than in 1980, leading to, among other things, outbreaks of cholera. Two of these struck Gwembe Valley in the 1990s. Unemployment and more frequent droughts meant that people had less money to buy food or to pay for health services. Many could not obtain the nourishing food that delays the onslaught of AIDS-related infections and speeds recovery from them. Caretakers usually lacked such basic nursing supplies as soap or clean clothing and bedding. They might be badly nourished, hungry, exhausted and feel cut-off from others by the stigma attached to those in close contact with AIDS patients. They knew they were at risk, for hard-working hands frequently have abrasions and without protective covering come in contact with body fluids. Few outside agencies did anything to help the caretakers. These were mostly women who were also expected to produce much of the family food. They worked knowing that they served those who would inevitably die. Even the phenomenal growth in membership of charismatic fundamentalist churches provided little material relief, given the prevalence of stigmatisation and fear of stigmatisation. On the other hand, assurances that religious belief in itself can both cure and provide one with material success may ease the burden for some. It says much for the moral fibre of the Gwembe people, their fellow Zambians and others in infected regions of Africa that they continued to provide care for the sick, came together to bury the dead and tried to care for the children left behind. There has not been a total debacle. Somehow people have maintained their own moral integrity. Many have shown abundant compassion, not just for the moment but over the long months of illness of those for whom they 144

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accepted responsibility. Once, one could have argued that they did this as part of a system of general reciprocity: as they cared for others, so they could expect to be cared for in their turn. But something other than reciprocity has been at stake given the death of so many of the intermediate generation, leaving the old without caretakers in their turn. What maintained them was their concept of themselves as responsible human beings, who met their obligations as best they could, and so maintained their self respect.

Epilogue The Gwembe people, like all of us, live in time. What has been said above described the response to HIV/AIDS up to October 2004 when I left Zambia. On my return in June 2005, much had changed. The few who had been willing to be treated with ARVs in late 2004 had made what were, to many, miraculous recoveries, and the demonstrative effect reverberated throughout the country. HIV/AIDS was no longer seen as a death sentence. People were asking to be tested to discover their HIV status. Some were even announcing publicly that they had AIDS but were now able to return to work and live normal lives since they had gone on the ARV regime. Some supplies were available to provide those on ARVs with the food needed if the drugs were to be effective. Caretakers were no longer facing the same stress as in 2004. Deaths were still common, but the depression that seemed to permeate Zambia in earlier years had dissipated, and stigmatisation of those with HIV/AIDS had lessened. The willingness to be tested and treated challenged local health facilities. By 2006, however, those involved in administering the ARV programme were voicing new concerns. While drugs were free, people often lacked money to pay transportation costs to reach the places where ARVs were available, and they were finding it difficult to maintain diets needed if the drugs were to work. Those who first acccepted treatment were beginning to develop resistance to the first echelon of ARVS and needed to move to a different array of drugs. For this, so far, no funding had become available. There was concern about dropout rates as people became discouraged by the cost of reaching treatment centres and by the knowledge that they would have to continue to stay on the drugs for the rest of their lives. So far, however, the mood remained one of more buoyant optimism. 145

DElizabeth Colson Notes Material for this chapter derives from a study of Gwembe Valley initiated in 1956 by Thayer Scudder and me (Scudder and Colson 1979 and 2002; Cliggett 2000). Initially it was supported by the Rhodes-Livingstone Institute (later the Institute for African Studies and now the Institute for Economic and Social Research in the University of Zambia), and thereafter by various agencies including the Social Science Research Council, the National Science Foundation, and for Scudder, the John Guggenheim Foundation. Over the fifty years of the study, we have been indebted to many people both in Zambia and elsewhere, and especially to village research assistants and the people of Miyaka, Mpwe, Chezia and Siameja neighbourhoods in what are now Siavonga, Chipepo and Sinazongwe districts. I am indebted to Thayer Scudder, Lisa Cliggett and Brendan Carmody for comments on an earlier draft, and to the members of the 2005 Berlin seminar on ‘AIDS and the Moral Order in Africa’, and most especially to Christine Obbo and Ute Luig for their comments on the draft presented at the conference.

Bibliography Bond, V., et al. 2002. ‘Stigma, HIV/AIDS and Prevention of Mother-to-Child Transmission in Zambia’, Evaluation and Program Planning 25(4): 347–56. CBOH (Central Board of Health ). 1999. ‘HIV/AIDS in Zambia: Background, Projections, Impacts, Interventions’. Lusaka. Clark, S., et al. 1995. ‘Ten Thousand Tonga: A Longitudinal Anthropological Study from Southern Zambia’, Population Studies 49: 91–109. Cliggett, L. 1997. My Mother’s Keeper: Changing Family Support Systems for the Elderly in the Gwembe Valley, Zambia. Ann Arbor: UMI Dissertation Services. ———. 2002. ‘Muiltigenerations and Multidisciplines: Inheriting Fifty Years of Gwembe Research’, in R. V. Kemper and A. Royce (eds), Chronicling Cultures: Long-term Field Research in Anthropology. Walnut Creek: Altamira Press, pp. 239–51. Colson, E. 1979. ‘In Good Years and in Bad: Food Strategies of Self-Reliant Societies’, Journal of Anthropological Research 35(1): 18–29. ———. 2000. ‘The Father as Witch’, Africa 70(3): 333–58. ———. 2004. ‘AIDS und Verhaltensänderung am Beispiel des Gwembe-Tals in Sambia’, Peripherie 93/94: 42–63. DHS (Demographic and Health Surveys). 1992. Lusaka. Guest, E. 2003. Children of AIDS: Africa’s Orphan Crisis. London: Pluto Press. Hinfelaar, H. 2004. History of the Catholic Church in Zambia. Lusaka: Bookworld. Kirsch, T. 2004. ‘What Is Belief? Restaging the Will to Believe: Religious Pluralism, Anti-Syncretism, and the Problem of Belief ’, American Anthropologist 106(4): 699–709.

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Luig, U. 1999. ‘Constructing Local Worlds: Spirit Possession in the Gwembe Valley, Zambia’, in H. Behrend and U. Luig (eds), Spirit Possession, Modernity and Power in Africa. Madison: University of Wisconsin Press, pp. 124–41. Lwanda, J. L. 2004. ‘Politics, Culture, and Medicine: An Unholy Trinity? Historical Continuities and Ruptures in the HIV/AIDS Story in Malawi’, in E. Kalipini et al. (eds), HIV and AIDS in Africa: Beyond Epidemiology. Oxford: Blackwell, pp. 29–42. Mogensen, H. 1995. Aids is a Kind of Kahungo that Kills. Oslo, Copenhagen, Stockholm, and Boston: Scandinavian Universities Press. Ngulube, N. 1989. Some Aspects of Growing Up in Zambia. Lusaka: Kenneth Kaunda Foundation. Nyblade, L., et al. 2003. Disentangling HIV and AIDS: Stigma in Ethiopia, Tanzania and Zambia. Washington, DC: International Center for Research on Women. Schoepf, B. G. 2004. ‘AIDS, History, and Struggles over Meaning’, in E. Kalipeni et al. (eds), HIV and AIDS in Africa: Beyond Epidemiology. Oxford: Blackwell, pp. 15–28. Scudder, T. 1983. ‘Economic Downturn and Community Unravelling’, Culture and Agriculture 18: 16–19. ———. 1985. ‘Economic Downturn and Community Unravelling Revisited’, Culture and Agriculture 23: 6–10. Scudder, T. and E. Colson. 1979. ‘Long-term Research in Gwembe Valley’, in G. Foster et al. (eds), Long-term Field Research in Social Anthropology. New York: Academic Press, pp. 227–54. ———. 2002. ‘Long-term Research in Gwembe Valley, Zambia’, in R.V. Kemper and A. Royce (eds), Chronicling Cultures: Long-term Field Research in Anthropology. Walnut Creek: Altamira Press, pp. 197–238. Webb, D. 1997. HIV and AIDS in Africa. London: Pluto Press.

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DChapter 7 Living beyond AIDS in Maasailand: Discourses of Contagion and Cultural Identity Aud Talle

Introduction: Outline of a Context In this chapter I discuss how the pastoral Maasai of East Africa, in discourses and practices, negotiate cultural boundaries between themselves and others while engaging with the HIV/AIDS pandemic.1 For the Maasai, biita2 which comes from ‘outside’ and brings with it death and misfortune becomes imaginable and manageable within a larger discursive context of modern living and urban sociality. Within this discourse, ‘Maasai culture’ as represented by the Maasai themselves as well as by others simultaneously facilitates and prevents transmission of HIV. This ambiguity of Maasai traditions within the HIV/AIDS national discourse appears to open up abundant space for creatively forging and reinventing cultural identity. The pastoral Maasai inhabit large tracts of savannah borderland between Kenya and Tanzania, but constitute a small fraction of the population in the two countries. Their exact numbers are unknown, but qualified estimates suggest some half a million people or more. Over the years, the pastoral Maasai have shown a notable cultural resilience and continue to mark their distinctiveness by ethnic attires and ‘traditional’ life ways (Spencer 1988; Spear 1993). From being a derogatory term – an icon of backwardness – in some public spaces, Maasai identity, or ‘Maasainess’, has become a sign of distinction in 148

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others (Talle 1999; Bruner 2005; May and McCabe 2004). The marginality of the Maasai and other pastoralists within the East African nation-states and their institutions of governance and finance have been amply documented (see e.g. Anderson and Broch-Due 1999; Brockington 2002). The liberal market economy thriving in Kenya for a long time, and also recently in Tanzania, has among other things had devastating effects upon the pastoralists’ access to and control of their territory. The loss of land resources in modern history, however, began long ago at the inception of British colonial rule in Kenya when large tracts of Maasai-controlled pasturelands were expropriated for white settlement (Hughes 2006). The scarcity of land and gradually diminishing livestock herds have pushed numerous individual Maasai to seek cash income outside the pastoral pursuit. In the context of this chapter, it is worth noting that Maasai areas have largely been spared from the scourge of the HIV/AIDS epidemic. Despite the fact that they occupy lands in close proximity to epicentres of the epidemic3 and that both Maasai men and women frequent these places, available prevalence figures remain low compared to national averages. During the time of my fieldwork in the mid 1990s, AIDS was, and still is (May and McCabe 2004), a disease that Maasai primarily talked or heard about; it was not the lived experience of the majority of informants. People we interviewed, however, had heard about the disease either through health information campaigns, through the radio or the church, in the market place or simply by word of mouth. Recent reports from Kenya continue to document widespread exposure to HIV/AIDS information among the Maasai (Norwegian Embassy 2006). Knowledge about biita was, however, fragmented, uncertain and shrouded in mystery. ‘We have heard about the disease, but we do not know its name’. This statement, delivered by an elderly man at a meeting, underscores the invalidity of abstract knowledge solely in the realm of illness management. ‘If I just could see an AIDS diseased person, I would know how to treat him’, said a male healer of renown, confident in his own diagnostic faculty. ‘There is no disease that Maasai cannot cure’, he continued, suggesting the historical self-sufficiency of Maasai people in curing most illnesses occurring among them. In the context of a highly infectious and fatal disease, but still not concretely felt in terms of prevalent AIDS cases, the Maasai nonetheless make efforts to ‘know the disease’ – to decode 149

DAud Talle signs and symptoms and learn about modes of transmission, so as to act upon them successfully. In other words, they are trying out ways of managing an alarming predicament, and in that process they bring their cultural concepts, knowledge categories and historical experience into a dynamic and creative interaction with a global reality. The movement of Maasai men and women to urban areas in search of labour and income (Talle 1999, 2002; May 2002) has inevitably led to Maasai coming into close contact with a great variety of people, other values and life styles (acquaintance with other cultures is, however, not wholly new to the Maasai, see for example, Waller 1993). The distinction between Maasai and non-Maasai, however, continues to prevail, has even hardened in some places, while it also tends to fade away or change form in some areas. The latter is particularly the case in the more fertile areas of higher altitude, where Maasai men own lands and frequently marry women from neighbouring agricultural groups. In Kenya children of such liaisons are referred to as ‘hybrid’ Maasai, in contrast to ‘pure’ Maasai, marking another difference in cultural identity. As noted long ago by Fredrik Barth, ethnic boundaries – a distinction between self and other in terms of cultural characteristics – persist in spite of increased interaction and flow of people (Barth 1969). The focus on social (ethnic) boundary instead of on the group as a bounded cultural unit is a ‘relational approach’ to the study of ethnicity (Eade and Allen 1999). This approach brings interaction and actors and their strategies and choices to the analytical forefront. It encourages a dynamic analysis of ethnic formation and social change and states that even though culture may change, ethnic boundaries may persist. Barth’s argument is by now well accepted within anthropology and still has potency for grappling with cultural plurality and power relations in different inter-ethnic and historical situations. As will be evident below, ethnic marking in various ways persists as a compelling concern in the construction of Maasai subjectivity and subjugation in modern East Africa (Werbner 2002).

A Brief Note on AIDS Prevalence in Maasai Areas Serological data on HIV prevalence in Maasai areas, both in Kenya and Tanzania, are scant. Blood screening of pregnant women at some 150

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mother-and-child health clinics and sporadic testing of suspected disease cases during fieldwork showed that HIV was present in their communities in the early and mid 1990s, but according to local and expatriate health personnel, on a relatively limited scale. A screening survey (N=22, 200) of sexually active men and women aged 15–49 between 1991 and 1999 in Kajiado district in Kenya, on the border with Tanzania, found a HIV prevalence of just over 0.5 per cent (quoted in Woodburn 2000). Another study referred to by Woodburn (2000) on antenatal blood specimens from Maasai women between 1989 and 1992 living near a high HIV transmission area in the same district, found an average HIV prevalence of 1.32 per cent.4 The relative slow spread of the epidemic into Maasai areas follows, to some extent, a general epidemiological trend in Africa of an urbanrural gradient of infection (Klepp et al. 1995; Webb 1997; Ndayongeje 2003). The antenatal screenings quoted in Woodburn (2000) do point to a higher HIV prevalence among the Maasai living close to high transmission areas than those in the remoter areas, thereby suggesting that even among the pastoral Maasai, the HIV epidemic may take a general course. Recent data from serological testing of pregnant mothers in one Maasai area in Ngorongoro District, Tanzania, found a prevalence rate of 5.6 per cent (2000.). This is a notably high figure, but being mindful of the fact that the sample is small (N=277) and that the screening was done in a hospital serving an ethnically mixed patient group, non-Maasai may be among those infected. According to some sources, the situation may change rapidly, not least in Kenya (Fuglesang 2007). When I have visited Kenya in recent years, Maasai friends claim that AIDS is also spreading among them, and they substantiate their claims with AIDS cases of which they know. A male friend recounted that his youngest sister, Nasieku, had died in the summer of 2001. He diagnosed her cause of death as AIDS from the sheer fact that her husband had passed away in December the year before. ‘It must be AIDS’, my friend ventured. ‘Or else, why should more people in the same family die at almost the same time, with only half a year’s distance?’ Besides, he added, his sister’s husband had at some time worked at the soda company in Magadi town. My friend had not seen his sister while she was ill and only learnt about her condition from relatives. He drew his etiological conclusion from his general knowledge of the HIV/AIDS epidemic coupled with the biographical history of the married couple: simul151

DAud Talle taneous death of spouses and the mobility of the husband through working sojourns in an urban setting were to him sure signs of AIDS affliction. Recent VCT testing figures (2008) from health centres in one Maasai district in Kenya, however, continue to show a relatively low HIV prevalence among ethnic Maasai. One health centre tested 494 from eight different localities and found thirteen HIV positive (many of these localities are ethnically mixed). The head of the health centre asserted that during his years of service, he had only come across one HIV positive who knew no other language than Maa (the Maasai language). To him such a monolingual person counted as a ‘pure Maasai’, in contrast to those Maasai conversant in Swahili and other languages who frequently are of ‘mixed origin’. Figures from VCT testing are necessarily skewed, based as they are upon voluntary testing, and even more so skewed in the case of the Maasai who are held to be reluctant to test themselves. ‘Maasai shun away from government institutions’, said a non-Maasai nurse, reiterating cultural stereotypes and prejudices. The fact that Maasai do present themselves less frequently for voluntary testing than people from other ethnic groups may not necessarily be because they dislike health services. More likely they see themselves as uncontaminated and in no need of testing.

A Sinister Scenario Health workers in Maasai areas along with quite a few ethnic Maasai voice pessimistic views for the future should the epidemic strike in their midst. According to observations and clinical assessments conducted by health personnel during fieldwork in the mid 1990s, venereal diseases were widespread in the Maasai communities.5 The health workers, often of non-Maasai origin, attributed the prevalence of such diseases to the pastoralists’ lack of personal hygiene, their ‘promiscuous’ sexual practices and general conservatism towards change. In other words, Maasai culture was prone to diseases. During colonial times, government officials were likewise concerned with the high prevalence of venereal diseases among the Maasai people (McKay 1950; Orr and Gilks 1931). With reference to minority populations such as the pastoral Maasai, voices representing a state (hegemonic) view are notoriously reluctant to look for explanation for 152

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deviant behaviour beyond the culture factor, for instance, by highlighting the poor and erratic health facilities provided in marginal areas and the general poverty of the people (Blystad 1995; Karp 2002; Talle 1999). In contemporary east Africa, the idea of a specific Maasai ‘dirtiness’ (uchafu in Kiswahili, hinting both at their traditional apparel and their perceived moral laxity) has gained renewed strength within the HIV/AIDS discourse (Talle 1999; May 2002). Just one quote from a Maasai HIV/AIDS male activist substantiates the claim: ‘Before, our warriors [the moran, or traditional Maasai fighters] would steal cattle, but now many of them have to go into urban areas to work and earn money. They often take with them the attitude towards sex. What makes me worried is that when it comes to sex, the Maasai have no limits.’ (Integrated Regional Information Networks 2003, author’s emphasis). Outsiders, and increasingly also Maasai themselves as evidenced in the quote above, articulate considerable concern about Maasai sexual practices. The traditions of sharing wives and girlfriends among members of the same age groups, besides a relatively high degree of polygyny among Maasai men,6 coexist with a reported situation of a high number of pre- and extra-marital sexual partners. In a note in the medical journal The Lancet, David Morley refers to an interview study with 132 Maasai men initiated by a missionary in Kenya. Over a three-year period, the study showed an annual mean of 11.5, 11.4 and 12.4 sexual partners, with a range from 0 to 45 for a year (Morley 1991: 668). Qualitative data from my own study indicate similarly high partner frequency patterns. Informants reported that it is normal both for men and women to have two to three permanent lovers (esindani, singular), in addition to the occasional lovers (engare engeene, singular). A total of 7–10 sexual partners, spouses included, were held by many Maasai informants to be a standard number for both sexes. As noted in the study above, however, there are also the single Maasai who have no lovers; these are, however, called by unflattering names and lack prestige among peers. Their antisocial behaviour challenges the collective orientation of Maasai age groups and their ethos of sharing. From a strictly sexual perspective, the Maasai would be a highrisk group of HIV infection, but in spite of the fact that Maasai value multi-partner sex and engage in large sexual networks, sexual morals among them are not loose nor do individuals take on sexual relations 153

DAud Talle lightly. On the contrary, sexual interactions are regulated according to a strict morality of prescribed sexual partners according to ageset and kinship affiliation, of apt timing and lastly, but not least, and particularly with reference to non-Maasai, of seemly erotic performance (Talle 1999). In spite of their age-set ideology (and their reputation), it is, however, an open question whether the Maasai in actual fact practice extramarital sexual relations to any larger extent than people of other ethnicities in Kenya and Tanzania.

Out of Maasailand Clinical examinations made by health workers in Maasai areas at the time of my fieldwork in Tanzania reported individual Maasai men who had died from AIDS. It was commonly noted that these men used to travel as cattle traders or businessmen to the big towns such as Nairobi and Mombasa in Kenya, and Dar es Salaam and Arusha in Tanzania. A few other suspected cases were also reported; these had either been infected through unclean injections or were ‘foreigners’, whose origins were often unknown, residing in Maasai communities. In the health workers’ representation, AIDS-diseased people were either atypical Maasai or, more often, were not Maasai. Some non-Maasai health workers I interviewed in Kenya in 2008 surmised that Maasai indeed were infected with HIV, but since they seldom attended hospitals their HIV-status was not disclosed. When arguing they reiterated Maasai loose morals as an explanation. Even when concrete illness experiences do occur as demonstrated by the following case, generalised assumptions about HIV etiology among the Maasai continue to reign. One of my research assistants died of AIDS in May 1992. He had then worked with me for roughly eight months and up until three or four weeks before he passed away, we were still travelling to the field together. When he eventually told me about his positive sero-status, which I had suspected for quite some time, he asserted that he had been infected five years earlier by a traditional healer in Mwanza town, on the shores of Lake Victoria, some 400 kilometres away from his home area at that time. My assistant had sought treatment for a complicated psychiatric disorder and this particular healer was famous all over northern Tanzania for his wide-ranging healing ability. In a long row of sick

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people seeking treatment for various diseases, my assistant had lined up for an injection. ‘The healer did not clean the syringe in between patients’, he explained, and appended emphatically, ‘my body was never the same after this treatment’. He was sure in his diagnosis that his HIV infection derived from an external (i.e. non-Maasai) source. To my surprise, even a well-educated and highly sensitised person unwaveringly reasoned within a paradigm of ‘outside’ infection. This may very well have been the truth in this individual case, but it was more the way he conveyed his certainty of illness causation that struck me. His wife, who learnt about her husband’s HIV status from project counselling staff after his death, was startled. ‘I thought he was bewitched … there are so many people around here’, she said, finding the causality of unexplainable and sudden deaths in ‘bad’ surroundings. The family lived in an urban and ethnically mixed area, where, according to the wife, jealousy and suspicion ravaged the residents. Recently, both Kenya and Tanzania have experienced a virtual explosion of labour migration of young Maasai men (educated as well as illiterate) to urban areas (May 2002). This migration has been particularly noticeable since 1997 (May 2002), but it began earlier. From a community in Tanzania on the Kenyan border in the early 1990s, local officials estimated that at least thirty of their young men (of a population of approximately 1,500) worked as night watchmen in Nairobi, Arusha or other towns. They leave ‘because of poverty’, was the explanation. Economic reasons continue to be a major factor for initiating migration (May 2000). Scarcity of cattle and lack of food supplies are definitely an incitement for young men to find income outside the livestock sector, but there is also an emergent labour market for Maasai men in the urban areas. Due to their reputed fierceness and courage, which they are assumed to have acquired during warriorhood in their home areas, Maasai are highly in demand for the rather dangerous work of night watchmen and security guards. Perhaps as many as 90 per cent of the night watchmen in Dar es Salaam are estimated to be of Maasai origin (Ole Moono 1998; May 2002). The large security firms both in Dar es Salaam and Nairobi successfully use Maasai imagery in their advertisements; the Maasai youth in full ethnic regalia and with a firm and straight look constitutes the icon of a reliable security guard. These firms only employ

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DAud Talle educated Maasai, but there is also a large informal market employing illiterate Maasai. When I briefly visited Dar es Salaam and Zanzibar in 2004, and again in 2007, the presence of Maasai guards at almost every tourist destination of any standing was striking. Likewise, the presence of Maasai women selling beadworks was far more spectacular in the streets then earlier, and I noticed that their products were imaginatively accommodated to new fashions and the taste of tourists, which had grown into a sizeable consumer group for Maasai handicraft. Recently, Maasai men and women have also successfully begun marketing ‘Maasai’ medicine, particularly reputed for its curing and strength-enhancing potentials in non-Maasai locales. In Dar es Salaam, Maasai men also find temporary work as plaiters of women’s hairs. The special Maasai technique of braiding by twinning strands of hair between the hand palms in thinner or thicker plaites has become fashionable lately among female town dwellers. I spoke to several of the migrants, both men and women, about how they fared and experienced town life. They never failed to emphasise that their town visits were temporary only – they had come in search of a livelihood – and that the next visit to home was forthcoming shortly. Many of the men and most of the women are married and leave spouses and children in their homelands. In her study of urban migrants in Arusha and Dar es Salaam, Ann May found, to her surprise, that a good number of the migrating men were eldest sons in their families (May 2002). She would have expected the younger males, lacking prospects of inheritance of the family herd, to constitute a major part of the job seekers. This, however, was not the case. My guess is that this situation reflects considerable and serious poverty among many Maasai families, where labour migration is seen as a way of rebuilding or keeping the herds. Whatever they earn above the sheer minimum, according to May (2002), is invested in livestock, or in the case of earnings by female migrants, invested in children’s survival and education (Talle 2002). The employed male migrants return home on a regular basis, once a month or once a year depending upon work conditions and upon the distance between the work place and their home. May (2000) describes the contemporary Maasai migration as an ‘oscillation’ between town and rural home, but always with the latter as a place of

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reference and belonging. She compares Maasai movement between ‘city and countryside’ with migration of young people from other ethnic groups, who she found migrated on a much more permanent basis and eventually became city dwellers. May’s findings correspond closely with my own observations among Maasai migrants in Dar es Salaam in 2007. The migration patterns of the bead-work trading and medicineselling women have many similarities with that of men; they return home once they have sold out their stock of products. This may take a month or two, even more depending upon the success of their sales. In the 1980s women in a locality in Kajiado, Kenya, used to sell their bead work profitably in Nairobi nearby, but due to the decreasing numbers of tourists in the capital in later years and stiff competition from other trading women, many of them now take their products to Mombasa, some 500 kilometers away. Considering the long distance, the costly bus fare and vagaries of the tourist buyer, they often delay in returning (Talle 2002). These days Maasai women (and men) increasingly use mobile phones to report home on the progress of their businesses. It is a clear-cut expectation from family members at home that migrants will return only when they have disposed of their products and earned enough money to bring back, to be used for the common good. Migrants squandering their earnings in town and returning empty-handed are considered ‘lost’ to their home communities. Women also travel daily to marketplaces in urban and semi-urban areas nearby to sell milk, firewood, charcoal or to engage in petty trading. These various employment and business activities implicating considerable mobility of individual Maasai expose numerous men and women to high transmission areas of HIV/AIDS infection.

Unaesthetic Encounters Historically, the Maasai have a tradition of marking their cultural distinction vis-à-vis others (empasha, difference). Already in 1905 the British colonial officer, Sir Claude Hollis, reported that the pastoral Maasai thought that people from the coast, accompanying the trade caravans inland, stank like ‘fowls’. They would never go near them nor touch them if they could avoid it (Hollis 1905). Coastal

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DAud Talle people along with other people of Bantu origin were, and still are, labelled by the somewhat derogatory term olmeeki (ilmeek, plural, i.e. ‘non-Maasai’, which Hollis translated as ‘savages’ [318]). The ilmeek represent everything opposite to the Maasai; they do not herd cattle but till the soil, they wear trousers, roam around without purpose, stay in crowded places, and lack respect for elders by lacking agesets. Most significantly, ilmeek are not circumcised the Maasai way, a bodily inscription that makes them incommensurable in terms of status to adult Maasai men.7 For the Maasai, circumcision (emurata) is not only a physical operation, but more importantly is an act of inclusion into an age-based male community of equality and sharing. Men who have not been initiated can never grow into adulthood, the Maasai say, because they lack the courage and moral integrity fostered in this single-sex fellowship. A Maasai female healer stated with great conviction that ‘they [ilmeek] die [from AIDS] because they are not circumcised’. For her that was a straightforward and logical causation. Acknowledging the link between circumcision and the constitution of the moral person in Maasai thought, her comment points to circumcision as an act of protection and inclusion (Spencer 1988). By being outside the shielded community of a coherent cultural order, people become susceptible to diseases and other afflictions. Although a word with multiple inflections and shifting meanings, olmeeki is, on the whole, negatively charged and signifies ‘impurity’ (entorro, badness) and difference. When used as a reference to one’s own tribesmen, which the notion increasingly is, olmeeki may also take on a descriptive note without outright deprecating undertones (see Hodgson 1999) – nonetheless in some way or another the term implies ‘otherness’. A parallel term of olmeeki is ‘Swahili’ (osuaili). This latter term derives from the fact that the ‘others’ use the Swahili language, a lingua franca in east Africa, as a medium of communication. The fact that they are not fixed in a local vernacular signifies, according to the Maasai, the others’ loose attachment to a morally identifiable community. The perceived difference between Maasai and ilmeek is so obvious that it does not have to be detailed in interaction, as evidenced in the words spoken by this female informant with reference to sexual relations between the two groups: ‘I thought each society maintained its own ethics and for this matter Maasai do love on their own and ilmeek on their own’. Love-making across ethnic borders was for her simply inappropriate. 158

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Intimacy as a Discursive Field In the wake of the AIDS epidemic, many Maasai, particularly among the young and educated, have begun more strongly to voice concern about the sexual practices of their people, above all ‘the promiscuous nature of our age groups’, questioning its validity in a ‘developing’ world (e.g. Ole Moono 1998). Many of these literate men are frequently involved in HIV/AIDS campaign work commissioned by both nongovernmental and governmental organisations. Promiscuity or multi-partner sex, which is taken to be rampant among the Maasai, is therefore strongly an issue in AIDS information campaigns and prevention work in their areas. Other Maasai, particularly the elders, on the other hand, are critical of modern life styles and easy living and claim that the younger age-sets (ilkingonde and younger) herald preferences and behavioural practices which are ‘ruining the Maasai’. Education is comparatively widespread among these age-sets and many of them, including the uneducated, are involved in livestock trade as well as other businesses, and in labour migration activities which take them far beyond Maasai fields of interaction. In the eyes of the elders, young adventurous men with modern aspirations constitute the bodily image of an emergent dissolution of territorial and moral boundaries. Some among them, particularly those dealing in the livestock trade, often carry large amounts of cash when they return from cattle auctions and may squander substantial amounts of money on beer and women en route for home. By cultivating sexual relations with women beyond their own group, these ‘wealthy’ and ‘travelling’ people are held by some Maasai to constitute a springboard to the HIV epidemic. As said by one elder: My opinion is that it is hard to control this disease. Sex is done very secretly and whoever does it will never tell anybody, and worse still are those people who go to Nairobi where AIDS is scattered all over the town. I am telling you even ilayiok [young, uncircumcised boys] have gone to Nairobi to search for work. These boys go without the awareness of their parents. This is very serious and has staggered the parents to the point that they have gone to oloiboni [traditional ritual healer] to rectify this abnormal situation of ilayiok running away from home.

This older man was lamenting the increasing lack of control that elders exercise over the younger age-sets. To stress his point he took the 159

DAud Talle example of uncircumcised boys who traditionally had little decisionmaking rights over their own persons. The disintegration of a structure of traditional authority was, in the mind of this informant, a precarious predicament for the well-being and prosperity of the community. Hitherto it has not been a widespread practice for noneducated Maasai (i.e. traditional Maasai, those wearing the ‘toga’, olkarasha) to seek sexual solace from ‘town’ or Swahili women, who often earn a living by selling alcohol and sex. Maasai men on the whole are not used to the idea of prostitutes and find it both ridiculous and slightly embarrassing to ‘buy a vagina’. Why should they pay for giving away their semen (i.e. blood), which basically is to a woman’s benefit (as she will become pregnant)? Nonetheless, some of them, particularly among the younger adventurous men, get involved in such relationships, either out of curiosity and attraction to the ‘Swahili’ women, or because they are lured into it under the influence of alcohol and ready cash. Both male and female informants voice concern about such encounters and some claim that they are an escalating problem. Episodes of intimate encounters between Maasai men and Swahili women inform local discursive fields of Maasai distinction. Stories about Maasai men meeting with Swahili women are told and retold both by Maasai and non-Maasai as proof of the Maasai difference and lack of familiarity with modern living. By narrating such stories, non-Maasai nourish their prejudices of the Maasai as ‘ignorant’ and ‘backward’ people; conversely, when Maasai elders retell the stories, they underscore the ‘stupidity’ and ‘otherness’ of ilmeek. To the noneducated Maasai, less familiar with modern ways, these episodes are yet another example of the unaesthetic Swahili mode of behaviour and why it does not befit respectable Maasai to mix intimately with such people.8 The stories told are more often about relations between Maasai men and Swahili women and seldom vice versa. Sexual relations between Maasai women and Swahili men are seen as a far more serious transgression of Maasai mores and cultural integrity. Pastoral women, therefore, whenever they are involved in such activities, exercise utmost care. If detected they risk social isolation; they will be prohibited from participating in important age-grade promotion ceremonies, and their female peers will recount their stories in songs performed at ceremonies. Accusingly, the women ask, ‘Why do you bring back all this “dirt” (oloirerio) to us?’ Uncircumcised, Swahili 160

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men are by Maasai definition ‘children’, and within the Maasai moral order they are thus inappropriate and ‘unclean’ (enturoto) partners for adult, circumcised women. (When Maasai intermarry with other ethnic groups, usually the men bring wives from outside; seldom do women marry men from other groups). Recently, reports of Maasai women being involved in sporadic commercial sexual activities have come from several places both in Kenya and Tanzania. Some twenty years ago such occurrences were almost unheard of or not spoken of among the Maasai in Kenya where I conducted research (Talle 1988). Prostitution as a means of survival is, however, not a totally new phenomenon to the Maasai. Luise White’s historical account of prostitution in colonial Nairobi notes even Maasai women working as prostitutes at the beginning of the twentieth century. During that particular time, Maasai communities had gone through a veritable breakdown following a number of disasters, which were related to livestock epizootics and successive droughts. White’s analysis of prostitution rests on an economic argument: firstly, income from daughters working as prostitutes was sent home for the benefit of the whole family, and secondly, female sexual and domestic services of offering food and comfort contributed to reproduce the urban male labour force (White 1990). A general comment I heard was that the Maasai women ‘prostituted themselves because of poverty’ and to supplement income from petty sales. They and not their husbands, who typically abuse alcohol, have become the breadwinners of their families. Husbands of these women may be painfully aware of their wives’ spoiled sexual identity, but have no means or power to enforce their wills. One male informant contemplated the situation and explained that Maasai women make love to ilmeek men because of money. In fact when we heard of AIDS every married man was so much affected because for sure our women are daily going to Namanga [border town between Kenya and Tanzania located in Maasai territory, see Talle 1999] for home needs. Now no husband is sure of his wife as far as money is concerned and women are naturally weak. This gave us doubts about whether our women are running with these Swahilis as they go to Namanga.

A female informant who used to sell milk in town claimed, ‘No, we don’t sex with ilmeek, this is a shame to a Maasai woman’ (author’s 161

DAud Talle emphasis). When probed further whether milk sellers in this respect differed from women who trade flour and other foodstuffs, she said, ‘I have no idea about them because immediately after selling my milk off I go back home’. Maasai consider milk sellers as less polluted by town life than women who trade in other (non-pastoral) foodstuffs. The reason is that milk sellers always return back in the evening (to milk the cows), whereas the others run businesses, which are not linked to the pastoral production regime, but are town-based. They may even remain in town over night. It is, however, uncommon for young Maasai women to work in bars selling beer – an occupation often associated and combined with selling sex. In one small township in Kajiado in 2008, we interviewed owners of forty-six bars and found that six Maasai women had been employed, but that most of them where reported to hail from an ethnically mixed area some distance away. The bar owners, who were not Maasai themselves, claimed that the Maasai degrade bar work, and furthermore, Maasai women do not know how to deal with drunken customers as they loose their tempers easily and tell their drunken customers off. When Maasai women get involved in commercial sex, either in Tanzania or Kenya, it appears to happen on an ad hoc basis, that is when the opportunity arises and they badly need money. During fieldwork in Tanzania in the early 1990s, I never came across Maasai women among the bars workers in the border town where we conducted research (Talle 1998), and at that time I only learnt of one Maasai (town) woman who was unmarried and lived as a mistress to a wealthy Maasai man.

Places of Danger Many Maasai, along with other Tanzanians and Kenyans, think that the HIV virus originally came from ‘Europe’ (Kiswahili Ulaya), carried by wealthy men to the big cities such as Nairobi and Mombasa. From there it spread all over the region.9 The main links in this continuous chain of infection were people on the move – those dealing in businesses and other temporary means of livelihood. The image of the wandering businessmen with pockets bulging with cash comes easily to mind in discourses on HIV transmission in many parts of Tanzania (see for example Setel 1999; Haram 2000). This social geography of contagion tallies well with observational knowledge and 162

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lived experiences. Those who die from AIDS, according to the Maasai, are the ilmeek and other townspeople (for instance ‘Somali’) – those who gather in crowded places and are privileged with money and easy living. Their own tribesmen who travel to town frequently or work there permanently and never return (osiusiwi ‘those who go to foreign places’) fall easily within the olmeeki category, and are likewise susceptible to diseases. That ilmeek bring and transmit diseases is a commonplace knowledge to the Maasai. They bring not only AIDS, but also other frightful diseases, for example olpepo (‘wind’, spirit possession), which increasingly strike women and young men (Hurskainen 1989), as well as other symptoms caused by sorcery and witchcraft (Johnson 1997). Maasai sometimes refer to AIDS as the ‘disease of the ilmeek’ (emueyian oolmeek), also ‘the disease of the road’ (emueyian olbarabara), suggesting its modern and mobile nature. Although they are apprehensive about the disease and what they hear about it – after all it is a deadly disease – conceptually and bodily, and semantically, it is still beyond the Maasai horizon. If they just refrain from intimate contact with the ilmeek (this category in the HIV/AIDS context may also sometimes in discourses include modernised Maasai living in towns), by avoiding their places and their company, they will not be infected, they reason. The town is a place of the Swahili and as such an alien and ‘bad’ environment to the Maasai – its miasma exposes them to danger (Douglas 1992). Except for the few Maasai who hold government positions or own shops and the educated with modern aspirations, most of them do not remain in the urban environment for long lest they become defiled. As noted, in particular the women make a point of saying that they just go there, do their business and return immediately, consciously communicating that the town is not a place of their liking. Also the young Maasai men I interviewed in Dar es Salaam in 2007 were very clear about the temporary nature of their town visits. Studies confirm that the majority of the Maasai use the rural homestead as the base for their social and economic activities even when these take them to distant places (FAO 1993; May 2002). As far as town life is concerned, the pastoral Maasai are ambivalent. Economically the town represents opportunities, a place for sales and purchases and acquisitions of services; socially and morally, however, it is basically an ominous place. 163

DAud Talle Town visits are recurrent states of liminality, making the Maasai vulnerable by exposing them to a chaotic world and by forcing them into intimate contact with ‘impure’ (uncircumcised) people. Migrant Maasai refer to the towns as osero (‘bush’), an expression, which alludes to undomesticated and hazardous spaces and places far away from home (May 2002). In towns, Maasai find themselves not only crowded together with an indiscriminate variety of people strikingly different from themselves, but the town is also the site where authorities of control most habitually demonstrate their power. When Maasai move around in town settings, they have to suffer unprovoked insults and intimidation related to their ‘traditional’ lifestyle, both from passers-by and from the executors of state control. Unless directly confronted, they ignore such depreciating commentaries; they have learnt to shy away from powerful agents of modernisation and enforced change. Recently, in Dar es Salaam and Zanzibar, however, the Maasai garment has become a source of prestige not least in tourist contexts, and according to informants, educated Tanzanians in particular have begun to respect their claim to ethnic distinction. In order to enhance their security in what they basically consider a world in which they are vulnerable, Maasai create their own spaces in town. Recognising the widespread poverty among them, however, these are often unhealthy and risky urban places, which underscore the pastoralists’ peripheral position in a modern setting. When single Maasai move to town as night watchmen or to trade beadwork or local medicine, they often find accommodation in poor and temporarily erected neighbourhoods, where blood screening shows that HIV prevalence is higher than in other, more established urban localities (Klepp et al. 1995). The conjuncture between political economy and sexual mores no doubt is a potentially fertile ground for HIV transmission into the Maasai population. Town life, which is the ultimate image of otherness, may pollute the social body of the Maasai; it drains the community of young men (particularly, since the 1990s, by migration and wage work), defiles female fertility (because of money) and extracts economic surpluses through the sale of cattle for consumption purposes (dissolution of property-holding institutions). Maasai conceptualise these processes as strong forces of change, which if not controlled, severely threaten Maasai cultural reproduction. On the other hand, through, among 164

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other things, processes of land alienation, economic discrimination and the tourist industry, the same power structures continue to construct Maasai as cultural/ethnic subjects within the context of the nation-state (Werbner 2002).

Conclusion: Maintaining Boundaries Through increased labour migration to urban areas, and in particular to towns in far away places, Maasai have recently begun to organise their urban living more conscientiously. Among others things, they regularly gather and socialise at fixed meeting places (iloip, singular: oloipi, ‘shadow’) where they exchange news, speak their own vernacular, perform Maasai dances, help each other with employment and seek advice from each other.10 Newcomers often learn about these meeting places before they leave home. In the town of Zanzibar in 2004, for instance, Maasai gathered under the large trees in the park in front of the House of Wonders, which was formerly the Sultan’s palace, but is now the Museum of Zanzibar. The Museum and the adjacent park is a tourist spot, and the Maasai men and women meeting there make themselves readily available for visitors’ admiration, as well as for fellow tribesmen seeking company, and also for the executors of state power. In her study, May found that Maasai watchmen in Dar es Salaam and Arusha always looked for a relative or a friend to replace them when they quit a job or went on vacation (May 2002). The collective spirit and mutual obligations between men of the same age group is a guarantee, as it were, for keeping or getting into the labour market. One European safari camp owner in Tanzania reported that he constantly had trouble with his watchmen, until he employed a Maasai and his age-group companions. The contemporary labour market of security guards in East Africa, and particularly in Tanzania, greatly favours ethnic Maasai. They are not only popular as embellishment at the hotel entrance door welcoming tourists (Bruner 2005), but they also represent themselves – and are considered by their employers – as more trustworthy, responsible and honest than people of other ethnic origins. And because they mostly work beyond Maasailand, they are not bound by any customary commitment or loyalty to the local employees at the hotels.11 In other words, as people from outside, they make ideal protectors of investors’ property. The 165

DAud Talle Maasai are very much aware of their privileged position within this section of the labour market, and they respond to and reinforce the positive cultural image by wearing ethnic garments and adhering to ‘aesthetic standards’ (Carrithers 1992) of ‘Maasainess’. By employing the term ‘social aesthetics’ as a leading theme of his cultural analysis, Michael Carrithers underscores the performative and dynamic character of culture. A ‘good’ cultural performance may be different from yesterday’s norm, but in the eyes of the beholder still be ‘the proper way of doing things’ (Carrithers 1992: 169). When Maasai men rework their Maasainess in towns, aesthetics, in the sense of appropriateness, is in focus. It is, for instance, very common to see young Maasai men wearing a mobile telephone attached to their traditional garment or to give out e-mail addresses (to the great amazement and admiration of tourists and national foreigners). A Maasai aesthetic standard of clothing does not exclude the complement of fashionable items or a change of colours or materials. On the contrary, new technical objects and alternative colour styles may add considerable ‘beauty’ (sidai) to a traditional outfit. Maasai often elaborate and overstate their ethnicity as a means of impressing others (and increasing their chances in the labour market). A ‘perceived theme’ (Carrithers 1992) in the presentation of Maasai culture in town – and within the tourist discourse – is a historical distinction between Maasai and ilmeek (‘Swahilis’). Notoriously, the Maasai I met at the coast continued to refuse to eat fish because of its smell – fish being an important food in many places in Tanzania (and Kenya), not least along the coast. ‘Just sitting close to a person eating fish, makes me vomit’, said one, with a most self-confident tone, while he complained about the food he was served at the luxury hotel he guarded. The words of this young man echoed the voices that informed Hollis’s work one hundred years ago (see above, subchapter ‘Unaesthetic Encouters’). ‘Our stomachs cannot tolerate beans either’, he continued, beans being another commonplace foodstuff of agricultural people. The handsome and sumptuously attired ‘warrior’ went on to elaborate that it was not ‘good’ (sidai) for them to eat the food in ‘this place’ (meaning Zanzibar). Nor was it appropriate to associate sexually with Swahili women, a piece of information he offered upon my questioning. Some did, but not many, he said, and concluded, ‘Maasai stay together’. In his representation of his migrant life, this young man made a sharp distinction between 166

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himself and other people on the coast. The statements from this informant and others I interviewed coincide with information from other sources: an interview survey of fifty individual male migrants, found that only two of them confirmed that they interacted sexually with town women (May and McCabe 2004: 22; see also Coast 2006). This low figure, according to the authors, may, however, be regarded with some scepticism. On the other hand, as I have tried to show above, there may be good reasons for Maasai men, at least those involved in the tourist business where being Maasai body and soul is a prerequisite for getting a job, not to associate sexually with Swahili women. Many of the young men I interviewed did not drink alcohol either. The general impression is that these non-educated men considered sex with non-Maasai women and alcohol consumption as shameful. Women back home, where rumours spread easily, would even refuse to have sex with such men. The markings of their cultural identity protect the Maasai, who are celebrated for their bravery and fierceness, in the urban settings, not only against petty criminals (who fear them) but also against the sexual advances of non-Maasai, who, except for individual Westerners (e.g. Hoffman 1998), find their appearance ‘dirty’ (Talle 1999). Maasai ethnic performance no doubt attracts the gazes of others, but simultaneously keeps onlookers at a bay. By carefully fashioning their ethnic identity, Maasai embody autonomy and distance, and in that process protect themselves from ‘evil’ influences of the town. One factor closely associated with the performance of identity is education – over the years educated Maasai who traveled beyond their own areas, have tended to exchange their olkarash for modern clothes (trousers, jackets and dresses). This is still the case, although most educated Maasai of the younger age-sets commonly signal their ethnic membership by wearing a beaded ornament, such as a bracelet or a belt. These days also uneducated Maasai travel widely in their traditional outfit, even in aeroplanes. Some are members of dance-groups performing in Europe, others are indigenous leaders on their way to a UN meeting, but there are also the ordinary travellers. In April 2008, I asked a Maasai women I met at Jomo Kenyatta Airport in Nairobi, who was on her way to the United States to visit her daughter studying medicine, why she travelled in olkarash and not a modern dress as many other Maasai do. ‘These are my clothes, I know of no other,’ she answered suggesting her Maasai origin. I 167

DAud Talle have found similar answers when I interviewed migrants in Dar es Salaam about marking ethnic identity by way of dress. They associate traditional clothing with lack of education and modern aspirations, claiming that they do not want to pretend to be something they are not. They insist on being Maasai, as it were, and in performing that identity the olkarash has become a sign of authenticity. In this context, it is important to emphasise that the revival churches sprouting all over Maasailand, also among the uneducated, welcome people as “they are”. A break with the past, as preached by the churches, does not necessarily imply a change of outer apperance. The woman I met at the airport was a devout Christian. Furthermore, manifesting a Maasai identity has gained considerable currency globally as well as in east Africa in recent years. The association between AIDS as a deadly disease and outside forces threatening the survival of the Maasai makes great sense to the pastoral Maasai. As they observe the deadly HIV/AIDS epidemic spreading more quickly among people other than themselves, they once more experience the validity of their own aesthetic standards – of Maasai cultural distinction. By disparaging intimate relations with certain categories of people, in this case ilmeek or town people, or by calling home or excluding those who have moved beyond the group, risks of contagion are eliminated at the same time as the group is morally consolidated (Douglas 1992). In this perspective, the degree of cultural coherence may be a factor in the dynamics of the HIV/AIDS epidemic. By avoiding dangerous places (they create their own places of security in towns) and defiling relations (they return to wives and girlfriends in home areas), the Maasai, however, remain positive that they will continue to stay free of AIDS. The social and cultural form of the present mass exodus of young Maasai men, and to a lesser extent women, is partly a response to an economic niche where performance of ‘Maasainess’ is the entrance ticket. The high number intermittently outside Maasailand nonetheless constitutes an interactional context that, in its specific ways, challenges as well as encourages cultural boundary marking and maintenance of a distinct ethnic identity (Barth 1969). The increasing poverty and the sloughing off of Maasai from the pastoral sector, however, may in time bring large numbers of them into hazardous contact zones of disease transmission. As long as they 168

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have land and wives (families) to return to, pastoral Maasai may avoid the most devastating effects of poor urban living, including the HIV/AIDS epidemic.

Notes 1. The material presented in this article derives from a three-year (1991–

2. 3.

4.

5.

6.

7.

1994) employment with the Tanzanian-Norwegian AIDS Project (MUTAN), in a research and intervention project in Arusha and Kilimanjaro regions in northern Tanzania. The data are chiefly drawn from two Maasai communities – one largely Maasai community in the Arusha region on the Kenyan border, the other an ethnically mixed community within the Kilimanjaro region – and a border town between Kenya and Tanzania. Since 1994 I have made repeated research visits to Maasai communities both in Kenya and Tanzania. In May 2007 I conducted interviews with Maasai labour migrants in Dar es Salaam, and in October–November 2007 and February–April 2008 I did a restudy in Maasai communities in Kajiado district, Kenya. Biita is Maa and means ‘shrinking’; the Kiswahili words ukimwi and eidiis, from ‘AIDS’, are also sometimes used. For example Nairobi, the capital of Kenya, with an HIV prevalence of 18 per cent, and the busy tourist town of Arusha in Tanzania, also have a high HIV/AIDS incidence rate, particularly among young people, (Klepp et al. 1995; Ndayongeje 2003). Woodburn (2000) also presents a table of diseases diagnosed by health workers for two consecutive years (1993, 1994) in a remote Maasai district in Arusha region, Tanzania. Out of a total of 45,162 disease cases in 1993, five were diagnosed as AIDS; the next year, fifteen out of 42,468 were given an AIDS diagnosis (Woodburn 2000: 21). Figures from pregnant Maasai women in Kenya between 1989 and 1992 indicate an average syphilis prevalence of 5 per cent, but with substantial annual variations, ranging from below two (1990) to almost 13 per cent (1992). Gonorrhoea averaged about 11 per cent both in women and men for a number of consecutive years (Woodburn 2000). In a survey of 100 men in the multi-ethnic field site community in Tanzania, we found that Maasai men on average had just below two wives each. In the more ethnically homogenous community on the Kenyan border, however, 78 men had a total of 207 wives (average 2.7) (MUTAN project, see Note 1). At circumcision the Maasai do not sever the foreskin completely, but leave it hanging underneath the penis. This was also a way of customary circumcising in other areas, for example, among the neighbouring Kikuyu in Kenya. This particular skin attribute of the penis gives rise to both pride and scorn, as well as humour. For instance, in Tanzania I heard the Maasai 169

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8.

9. 10. 11.

penis being referred to as the ‘driver and the co-driver’. Maasai also dislike the wooden penis models used in condom campaigns by health workers, with the explanation that they are not ‘correctly’ circumcised and thus do not apply to them (Coast n.d.). Maasai men have for generations married women from selected agricultural groups, for instance from the Kikuyu in Kenya, and Meru in Tanzania (e.g. Waller 1993). That HIV originated in the West and spread by travellers to Africa is even sometimes told by HIV/AIDS educators. Oloip, which means ‘shadow’, is a commonly used expression for meeting and dancing places of young unmarried people. Many people dislike this favouritism of Maasai by foreign investors. On the island Pemba, north of Zanzibar off the Tanzanian coast, Maasai were chased away by local people.

Bibliography Andersson, D. and V. Broch-Due. 1999. The Poor Are Not Us: Poverty and Pastoralism in Eastern Africa. London: James Currey. Barth, F. 1969. ‘Introduction’, in F. Barth (ed.), Ethnic Groups and Boundaries. The Social Organisation of Cultural Difference. Bergen: Universitetsforlaget George Allen and Unwin. Blystad, A. 1995. ‘Peril or Penalty: Aids in the Context of Social Change among the Barbayiig’, in K. I. Klepp, P. M. Biswalo and A. Talle (eds), Young People at Risk: Fighting Aids in Northern Tanzania. Oslo: Scandinavian University Press, pp. 86–106. Brockington, D. 2002. Fortress Consevation. The Preservation of the Mkomazi Game Reserve, Tanzania. London, Oxford: The International African Institute, James Currey. Bruner, J. 2005. Culture on Tour: Ethnographies of Travel. Chicago: University of Chicago Press. Carrithers, M. 1992. Why Humans Have Cultures. Explaining Anthropology and Social Diversity. Oxford: Oxford University Press. Coast, E. n.d. ‘Wasting Sperm. The Cultural Context of Condom Use among the Maasai in Northern Tanzania’, Unpublished paper. ———. 2006. ‘Local understandings of, and responses to, HIV. Rural-urban migrants in Tanzania’, Social Science and Medicine, 63(4): 1000–1010. Douglas, M. 1992. Risk and Blame. Essays in Cultural Theory. London: Routledge. Eade, J. and T. Allen. 1999. ‘Ethnicity’, in T. Skelton and T. Allen (eds), Culture and Global Change. London: Routledge, pp. 145–55. FAO (Food and Agriculture Organisation). 1993. ‘Monduli District; an AgroEconomic Survey of the Maasai, 1993’. Dar es Salaam: FAO / Marketing Development Bureau. Draft. 170

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Fuglesang, M. 2007. ‘AIDS the New Masai Lion – An Assessment of HIV/AIDS in Masai Mara and Recommendations for a HIV Prevention Program for Basecamp Explorer Kenya’(draft), Dar es Salaam: FEMINA HIP. Haram, L. 2000. ‘Women out of Sight: Modern Women in Gendered Worlds. The Case of the Meru of Northern Tanzania’, Ph.D. thesis. Bergen: Department of Social Anthropology, University of Bergen. Hodgson, D. 1999. ‘“Once Intrepid Warriors”: Modernity and the Production of Maasai Masculinities’, Ethnology 38(2): 121–50. Hoffman, C. 2000. 1998. Den Vita Massajen, Stockholm: Wahlström and Widstrand. Hollis, C. 1905. The Maasai. Their Language and Folklore. Oxford: Claredon Press. Hughes, L. 2006. Moving the Maasai. A Colonial Misadventure. Palgrave Macmillan. Hurskainen, A. 1989. ‘The Epidemiological Aspect of Spirit Possession among the Maasai of Tanzania’, in A. Jacobsson-Widding and D. Westerlund (eds), Culture, Experience and Pluralism: Essays on African Ideas of Illness and Healing. Stockholm: Acta Universitatis Upsaliensis, pp. 139–50. Integrated Regional Information Networks (IRIN). 2003. ‘Tanzania: Maasai Rising to the Challenges of HIV/AIDS’, IRIN PlusNews. Retrieved in May 2003 from http://www.irinnews.org/Report.aspx?ReportId=34176 Johnson, N. 1997. ‘Maasai Medicine. Practicing Health and Theraphy in Ngorongoro Conservation Area, Tanzania’, Ph.D. dissertation. Copenhagen: Institute of Anthropology, University of Copenhagen. Karp, I. 2002. ‘Development and Personhood: Tracing the Contours of a Moral Discourse’, in B. M. Knauft (ed.), Critically Modern. Alternatives, Alterities, Anthropologies. Bloomington: Indiana University Press, pp. 82–104. Klepp, K.-I. et al. 1995. ‘The Local HIV/AIDS Epidemic in Arusha and Kilimanjaro’, in K.-I. Klepp, P. M. Biswalo and A. Talle (eds), Young People at Risk: Fighting AIDS in Northern Tanzania. Oslo: Scandinavian University Press, pp. 3–17 May, A. 2002. ‘Unexpexted Migrations: Urban Labour Migration of Rural Youth and Maasai Pastoralists in Tanzania’, Ph.D. dissertation. Boulder: University of Colorado. May, A. and T. McCabe. 2004. ‘City Work in a Time of AIDS: Maasai Labor Migration in Tanzania’, AfricaTODAY 51(2): 3–32. McKay, D. H. 1950. ‘Venereal Disease in Maasai. A Field Survey – June and July 1950’, East African Medical Journal 27(11): 451–57. Morley, D. 1991. ‘Kenya: Maasai Warriors and Their Sexual Partners’, The Lancet 337(March 16): 667–68. Ndayongeje, J. 2003. Current Situations and Plans for HIV/AIDS in Tanzania. National AIDS Control Programme, Ministry of Health. Norwegian Embassy. 2006. ‘Eradication of Female Genital Mutilation (FGM) in Narok District’. Survey report, Norwegian Embassy, Nairobi. Orr, J. B. and J. L. Gilks. 1931. The Physique and Health in Two African Tribes. London: Her Majesty’s Stationary Office. 171

DAud Talle Ole Moono, R. R. 1998. The HIV/AIDS Threat (Proposal for Support in HIV/ AIDS Campaign for Maasai in Handeni and Dar es Salaam). Imusot e Purka. Pastoralist Organisation, Handeni: MS. Spear, T. 1993. ‘Introduction’, in T. Spear and R. Waller (eds), Being Maasai: Ethnicity and Identity in East Africa. London: James Currey, pp. 1–18. Spencer, P. 1988. The Maasai of Matapato: A Study of Rituals of Rebellion. London: Manchester University Press for the International African Institute. Talle, A. 1988. Women at a Loss. Changes in Maasai Pastoralism and Their Effects on Gender Relations. Stockholm Studies in Social Anthropology 19, Stockholm: University of Stockholm. ———. 1998. ‘Sex for Leisure: Modernity among Female Bar Workers in Tanzania’, in S. Abram and J. Waldren (eds), Anthropological Perspectives on Development: Interests, Identities and Sentiments in Conflict. London: Routledge, pp. 36–54. ———. 1999. ‘Pastoralists at the Border: Maasai Poverty and the Development Discourse in Tanzania’, in D. Andersson and V. Broch-Due (eds), The Poor Are Not Us: Poverty and Pastoralism in Eastern Africa. London: James Currey, pp. 106–24. ———. 2002. ‘Kvinner og Utvikling – Tjue år seinere (Women and Development - Twenty Years after), Norsk antropologisk tidsskrift 13(1–2): 47–61. Waller, R. 1993. ‘Acceptees and Aliens: Kikuyu Settlement in Maasailand’, in T. Spear and R. Waller (eds), Being Maasai. Ethnicity and Identity in East Africa. London: James Currey, pp. 226–57. Webb, D. 1997. HIV and AIDS in Africa. London: Pluto PressWerbner, R. 2002. ‘Introduction. Postcolonial Subjectivities: The Personal, the Political and the Moral’, in R. Werbner (ed.), Postcolonial Subjectivities in Africa. London: Zed Books, pp. 1–21. White, L. 1990. Comforts of Home: Prostitution in Colonial Nairobi. Chicago: Chicago University Press. Woodburn, F. 2000. ‘Social, Cultural and Demographic Factors of HIV Transmission Dynamics among the Maasai of Loliondo Game Controlled Area, Northern Tanzania’, undergraduate thesis. London: School of Oriental and African Studies.

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DChapter 8 Politics of Blame: Clashing Moralities and the AIDS Epidemic in Nso’ (North-West Province, Cameroon) Ivo Quaranta

Theoretical Background This chapter is based on ethnographic fieldwork carried out in 1999– 2000 in Kumbo, once the capital of the pre-colonial kingdom of Nso’, in the present Bui Division of the Anglophone north-western Grassfields of Cameroon (Quaranta 2006). The work analysed the local processes of social production and cultural interpretation of AIDS, through interviews carried out with medical personnel and directors of the two local hospitals (both belonging to religious institutions), more than forty traditional doctors (anngaashiv), the local ruler (HRH Sëm Mbinglo I) and some members of the royal palace (Nto’ Nso’) and secret societies members, as well as with many young men and women with whom I spent most of my afternoons talking in bars and in market squares. I also took part, when given the opportunity, in the fon ritual activities and the therapeutic sessions of anngaashiv and lineage heads. Although a broad variety of interpretations emerged during the research, all seemed to imply that waame (the lamnso’ term for AIDS) is nothing new, nothing different from kinjuume and kinsenin. Kinjuume is the term for bodily dryness and the loss of vital essence that 173

DIvo Quaranta leads to death, whereas kinsenin represents a form of bodily weakness often associated with old age and chronic conditions. As far as AIDS is concerned, however, the causes people refer to are quite diverse: on the one hand, some claim that waame is produced by kon and nsela’, terms related to the violation of sexual taboos either in the form of incest or adultery; on the other hand, some interpret it as the outcome of a specific form of witchcraft. Even if these interpretations were widely diffuse, during fieldwork I noticed that individuals were leaning towards one rather than the other according to their generational position: traditional doctors, lineage heads and the royal palace representatives were prone to accuse the youth for bringing waame by violating sexual norms, whereas those who were not part of the local aristocracy (i.e. those socially defined as youth) blamed instead the local, national and international hierarchies as the ultimate cause of the epidemic. Through the proposed analysis, AIDS symptoms will be seen as ways of culturally producing a political commentary on the difficult postcolonial reality, as it is experienced by individuals in different social positions. Waame will emerge as a contested ground for the affirmation and/or the critique of a social order, a ground whose boundaries go well beyond the regional scenario to encompass the national and the international arena. In this way, bodily signs and experiences will stand out as embodied narratives centred on a specific political physiology. This chapter will be mainly focused on this aspect, which is at the very core of a variety of meanings and experiences that allow us to grasp an understanding of waame as an embodied cultural practice. In order to describe illness in terms of a cultural practice, indeed an embodied one, we must take into consideration two aspects: how bodies are socially produced as well as what they produce. What I want to argue here is that we should look at illness as a human construct that must be investigated in terms of its manifold processes of production (how it is produced and what it does produce). Therefore, illness can be appreciated as a cultural practice only if we look at the relationship between experience and representation in a mutually constitutive and dynamic way: as Kleinman, Das and Lock have suggested, cultural representations of suffering shape it as a form of social experience (1997: xi–xii). This can also be said for the body: as Michel Feher pointed out, ‘the history of the human 174

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body is not so much the history of its representations as of its modes of construction. For the history of its representations always refers to a real body considered to be “without history”’ (Feher 1989: 11). Historical images of illness and the body, then, emerge as practical and symbolic means for their construction, to an extent that we may talk of them in terms of historical and social processes. It is through such historical and social images that we live as positive presences in a meaningful world. Nevertheless, the body is not a mere product of history and society, as it is also the lived ground of existence: bodies are constituted in and by practices and discourses (Mol 2002; Young 1995), and at the same time they are lived sites of discourses and practices (Csordas 1990; Good 1994). We therefore look at the body as a process that is historical and social as well as personal, and speak about historical forms of embodiment. What I am calling for is the need to combine an anthropology from the body (Csordas 1994: xi), concerned with ‘what the body does,’ with an anthropology of the body, which looks at ‘what is done to the body.’ If considered separately, the two approaches tend to be reductionist. An anthropology from the body has the potential to show the active role the body plays in producing culture and experience, but it bears the risk of depicting the body itself as a transcendent force devoid of history. On the contrary, if we combine such a focus with an anthropology of the body, we can counteract this tendency ‘by revealing that the body is always already engaged in a specific social situation by means of techniques or rule governed practices which are historically and geographically contingent’ (Crossley 1995: 43–44). I believe that only by combining these two analytical focuses, can illness emerge as a process that is personal as well as historical, produced as well as productive. Affirming the agentive nature of the body has to go along with an adequate analysis of how it is socially crafted, as the body is productive in the very terms of its historical facticity.

Historical Forms of Embodiment: On the Inscription and Naturalization of Hierarchy In order to develop and support this thesis, we will start by considering the local symbolisms of the body in Feher’s terms, as historical modes of its construction. However, it will soon be clear that 175

DIvo Quaranta speaking about symbolic meanings without analysing their social production is reductive, as they are rooted in specific historical, political and economic processes that transcend the local reality under investigation. Many scholars have shown how the Grassfields political units were characterised, in pre-colonial times, by profound social stratification and inequalities, produced by the opportunity of wealth accumulation allowed by long distance trade, through which a local elite could emerge (Rowlands 1979; Warnier 1985). If local trade was open to everybody, the exchange of foreign products was under the direct control of the fon through a system of licences (Kibam ke way ke fon). Therefore, local rulers (fon) and their titled men had exclusive access to the items of such a trade. These items (also including European goods traded by the coastal middlemen) were used as ritual objects in discerning, and fighting against, witchcraft: their alien origin gave them magical attributes, according to the local symbolism of power, as something that comes from a different reality (Argenti 1999; Fowler 1990; Rowlands 1987). Those who had access to such ritual objects, therefore, held a magical power to protect the community against misfortune, illness and death. In Nso’, this power is called sëm and is conceived in terms of a substance contained in the abdomen: its possessors have the ability to transform themselves into animals or atmospheric phenomena such as wind and storms (Chilver 1990). The idea of a magical substance contained in the abdomen is a widespread cultural theme in the regional scenario; however in Nso’ we can identify a variation: everybody is believed to possess the ancestral substance through maternal patrilineage, but only a few can control and use, as well as increment, sëm. Some individuals, in fact, are believed to host the ritual transformations (vibay) that left the bodies of powerful people, now considered as ancestors, when they died. These spirits often come from other fondoms (as well as from one’s own), and everything must be done to avoid their departure so that rulers, traditional doctors and lineage heads can invoke them in the human fight against misfortune. For this reason, specific rituals are performed on the bodies of newly elected afon or lineage heads (afaay), with the aim of domesticating and containing such forces. Again, if special signs indicate a gifted child, traditional doctors are called to identify the child’s 176

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proper name, as it is believed that she or he embodies a foreign spirit that must be recognised in order to be kept within the fondom. These gifted people are credited to be sii que (literally, ‘four eyes’, i.e. people with the power to see the invisible reign of spiritual forces) and are usually invited to join the several secret societies of the fondom, such as Ngwerong and Ngiri: ritual institutions with specific political functions (see Goheen, 1996; Quaranta, 2006), whose role is precisely that of containing, controlling and incrementing sëm. When a titled man (lineage head or high member of a secret society) or a fon dies, his successor inherits his power (both material and magical), embedded in the social role he occupied. The distribution of sëm, therefore, runs along the structure of a highly stratified social order produced – as we have seen – by the opportunity of accumulating wealth, which is historically related to the rulers’ exclusive control over long-distance trade. Among others, Rowlands (1979; 1998) and Warnier (1985; 1993) have pointed out how the particular relevance given to somatic power can be referred to the historical experience of slave trade. In the areas that have been less exposed to European goods (and slave trade), power is, in fact, still described through a container metaphor, but the container is represented by ritual objects (Baeke 1996). However, where the slave trade allowed the rise of a local aristocracy, power is symbolically represented as being held into the very bodies of the elite (Rowlands 1998). In the western Grassfields, the slave trade was mainly practised by lineage heads (faay): title holders were polygynous, and all male cadets were excluded from power and sexuality and kept under control either by being sold as slaves or by being given to the fon and his secret societies as attendants (Warnier 1993). It was mainly through selling their subordinated kinfolks, in fact, that local elites could achieve the commercial goods that would transform them into receptacles of magical power (sëm), allowing them to protect the community over which they ruled. The local image of somatic power can, therefore, be seen as a way of legitimating the social inequalities produced by the accumulation brought about by long distance trade: those who could accumulate wealth through selling their kinsfolk were also the ones who had the power to protect the kin group and the entire fondom from witchcraft. We can see here a powerful example of local historical forms of embodiment, intended both as the socio-cultural and historical di177

DIvo Quaranta mensions of the body and as the bodily aspects of socio-historical processes. The consideration given to the bodies of the elite appears as a way of naturalizing the social exclusion of women and youth from accessing material and symbolic resources of the kin group, as well as a way of legitimizing their sale as slaves for the community well-being and security. This is how deeply historical, economic and socio-political aspects emerge as constituting the most intimate dimensions of personal embodied existence.

New Alterities: Colonialism, Modernity and the Generational Contest for Power The category of youth in Nso’ has to be understood according to the specific socio-cultural background, in which individuals were classified as ‘children’ and ‘youth’ not in terms of their biological age, but rather in terms of their social position within hierarchical social relationships (Balandier 1974; Bayart 1989). In other words, the possibility of growing old was directly related to the capability of accumulating power. However, social mobility was tightly controlled and restricted by the local system of succession: when a lineage head died, his wealth was not distributed among his dependants, but it was kept intact for his successor. Among the pretenders to his title, only one could grow to the status of adulthood. This system, therefore, configured a structural and systematic exclusion of the majority of the youth from social mobility, independence and marriage. Given this scenario, it is not surprising that, at the end of nineteenth century, youth sought in the German colonial administration a possible way out from the traditional power hierarchy (Argenti 2002; Bayart 1985, 1989; Warnier 1996). A certain number of young men managed to be recruited into the bureaucratic apparatus of the colonial and missionary administration as clerks, secretaries, interpreters, soldiers and so forth. Just as European goods were incorporated in the local image of power and alterity, also the colonial administration came to be understood as a new form of alterity, dangerous and powerful at the same time and, therefore, to be incorporated and domesticated by the local ritual institutions (secret societies with political functions, whose aim was and still is controlling and domesticating power by initiating sëm possessors). The analysis of this 178

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process is highly significant in order to understand the present predicament of the youth in postcolonial Nso’. The new forms of alterity, emerging through the contact with European goods and colonial administration, produced a transformation in the local image of power and in the fons’ strategies for accumulating it. The new elites, originating through the involvement of social cadets into colonial and postcolonial administrations, have forced local rulers to revise their title system in order to incorporate the new possessors of sëm, whose power was locally perceived as originating from their contact with new forms of alterity, for example, colonial administration, urban centres, the post-independence state and the West (Argenti 1996; Fisiy and Goheen 1998; Geschiere 1997; Goheen 1996). This explains why and how the local imagery depicted modernity as an alien reality, powerful and dangerous at the same time, and as such at the very centre of the fon’s strategies for wealth accumulation and control. In this context, the contemporary youth identification with a local image of Western modernity emerged as a symbolic means by which it claimed access to a social status which is alternative, though not independent, from the traditional power structure. In fact, personal involvement in the new forms of alterity is conceived until today as a means to enter the local hierarchy. In this sense we can certainly speak of a neo-traditional power structure, marked at the same time by transformations and continuity. However, the vast majority of people who did and do seek an identification with the local image of Western modernity, without achieving any form of success and inclusion, remains excluded from both systems: the neo-traditional one and the local forms of modernity (market economy, state administration and bureaucracy, religious institutions, etc.). These people are regarded as blameworthy by lineageheads and title holders involved in the secret societies, being perceived as smugglers of an undomesticated alterity that is potentially subversive and dangerous since it is not subjugated to the fon’s ritual institutions. If the capability of having access to, and of exhibiting icons of, an alien world is a way to symbolise one’s own success and power, for those who are excluded from the local hierarchy, the consumption of Western goods, the adoption of a Western style as well as specific

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DIvo Quaranta relational practices emerge as alternative means to objectify their prestige or their wish for self-realization. In this frame, we can look at the sexual habits of contemporary youth as a symbolic device to seek a place in the local dynamics of power and identity. During the research, the young men I spoke to clearly referred to the ability of attracting women in terms of a way to symbolise their prestige and their will to be recognised as adults. Given the above mentioned historical background, it is not surprising that access to sexuality is a central moment in the process of shaping youth identity. In this sense, the continuous reference that the young informants made towards sexual power in terms of attracting as many women as possible and making this power evident to the public are significant. Such an attitude is strikingly in contrast with the cultural emphasis on continence that characterises the traditional view of sexuality, rooted in the attention not to disperse sëm: semen, along with the other bodily fluids, is in fact seen as a means for its transmission, and, therefore, is not to be dispersed but kept under the faay’s authority and accumulation strategies.

The Palatine Ideology of Waame In this particular scenario, we can understand why contemporary titled men accuse the youth and their sexual practices – believed to pollute and undermine the moral order of the entire fondom – to be responsible for the AIDS epidemic, considered by the local health authorities as the leading cause of death among youth. The youth are accused of not following the laws of the land (nser se nsay), according to which their access to sexuality should be mediated by the concession of a wife by their lineage head or through their own succession as head of a kin group. According to the local elite, which includes the angaashiv (traditional doctors, whose healing power is itself subject to the fon’s ritual domestication through their initiation in the secret societies), the youth no longer follow the laws of the land mainly because of their involvement in the local forms of modernity, which drive them away from respecting the moral principles on which the fondom is based. We can call this interpretation the ‘palatine ideology of waame’, according to which AIDS is nothing new, nothing different from the consequences of kon and nsela’. As anticipated before, these terms identify the violation of sexual taboos 180

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either in the terms of incest or adultery. While the etymology of kon is difficult to elicit, that of nsela’ is quite clear: ‘poisoning the compound’. Violating the compound laws, in fact, implies contaminating the whole kin group. Contamination is perceived as a decrease in the ancestral substance (sëm), the constitutive principle for the kin group identity that makes the group vulnerable to misfortune and illness. Such a situation literally poisons the social body and undermines its ability to protect itself against external antisocial forces. Blaming youth for this situation is very significant: the charge is careless sexual activity, without verifying if there are social impediments between partners, for a desire of identification with an imagined modern world that leads them away from tradition. The imputation of kon and nsela’ has to be interpreted as a metaphor by which the neo-traditional elite accuses the youth of going against a social order, whose stability would have allowed the protection of the community from the penetration of any form of misfortune (including waame). Uncontrolled sexuality is seen as an illegitimate appropriation of a very scarce resource: sëm. In fact, if lineage heads are the only ones who can embody and control such a powerful substance, sëm is also seen as the foundation of a kin-group identity that can take several aspects, including bodily fluids. The sexual activity of youth is seen as a dissipation of sëm that brings about the pollution of all those who share the same kin identity. In this symbolic background the youth are held responsible not just for their own suffering, but for exposing to misfortune their entire kin group, as well as the entire fondom. Once again, the historical roots of this interpretative process lead us back to colonial times, when the youth sought, in the identification with the Germans and later with the English, a possible way out from the social exclusion they were condemned to by the local system (Argenti 1998; Bayart 1985; Mbembe 1985, 1988; Warnier 1996). In essence, waame is seen by the local elite as a consequence of breaking the moral order, a form of pollution emerging from the dissipation and the encounter of sexual fluids that were meant to circulate only for the social reproduction of the group, under the exclusive control of the lineage heads. We can now understand why the local elite accuse the youth of virim ve shui vi, that is of ‘witchcraft at daylight’: an expression used to indicate all the actions done in full awareness of the consequences they will produce. 181

DIvo Quaranta Youth sexuality in the times of AIDS emerges as a form of witchcraft that exposes the entire community to the risk of contamination: no wonder, therefore, that people with AIDS are not viewed as victims deserving compassion, but as people responsible for their own and their kin-group misfortune. It is, therefore, not surprising that, in 1999–2000 (before antiretroviral drugs became available at an affordable price), what people with HIV/AIDS feared the most was that their families would abandon them, in the sad awareness that nothing could be done to stop waame. Sufferers’ silence about their condition does not seem rooted in a cultural denial of AIDS: it rather seems a strategy to negotiate care and family attention (Quaranta 2006).

The Local Forms of Biomedicine Far from being relegated in the so-called traditional understanding, these images are also found in the local agencies of biomedicine. Aligned with a widespread orientation in terms of HIV/AIDS prevention and information campaigns, the two religious hospitals in Kumbo (the capital of Nso’ fondom) have addressed the issue of AIDS in terms of an illness that can be avoided through premarital abstinence and subsequent faithfulness. In doing so, here as elsewhere, the idea that AIDS is an illness that strikes promiscuous people for their irresponsible personal behaviour has been unintentionally reinforced in the local population. It is not surprising then that those who are among the most affected by the spread of the epidemic, namely the youth, refuse to ask for their blood test results when they enter the hospitals for symptoms related to HIV/AIDS. Within such a milieu, a positive diagnosis is already taken as evidence of guilt (Fassin 1996): silence is, therefore, the most salient aspect of their personal narratives of illness. The local agents of biomedicine have been very active in giving information aimed at preventing the spread of the epidemic; however, such informational campaigns have often been seen with a certain amount of scepticism by local people, since they portrayed local culture and tradition as risk factors to be fought in order to stop the epidemic. Once again, deeply historical themes emerge as structuring forces of the present predicament (Maynard 2004; Quaranta 2004). Moreover, during interviews people often claimed that asking for HIV test results would be useless as the hospital would not give them 182

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anyway. According to the interviewees, health operators were afraid that – after being informed of being HIV positive – a person might start intentionally spreading the virus. True or not, such claims are clear indexes of a deep scepticism that characterises the biomedical approach to AIDS and AIDS sufferers. Health operators in the two hospitals, in turn, did not contradict such claims, stating that it is a common practice to give the result only to those who explicitly ask for it, except in the case of couples in the process of getting married or already married. It is again clear the reference is to an insubordinate and promiscuous sexuality as the main cause of AIDS. By giving HIV test results only to married couples, the local representatives of biomedicine unwillingly participated in the symbolic construction of AIDS sufferers as antisocial persons, capable of deliberately destructive acts towards other people, that is as daylight witches (people who do not possess any magical power, as it is in the case of night witches, whose sëm is used for personal profit). We can easily identify, in this description, the influence of the first international interventions crafted by the World Health Organisation (WHO) Global Programme on AIDS, that goes under the acronym of KAP (Knowledge, Attitude, Practice). By adopting this protocol, local biomedical institutions have contributed to a culturalist and behaviourist understanding of the spread of the epidemic, reducing the issue to control and correction of individual sexual practices. As elsewhere in Sub-Saharan Africa, the government of Cameroon focused on specific risk groups, in accordance with WHO guidelines. Starting in the mid-1980s prostitutes, truck drivers, soldiers and students became the main target of AIDS prevention and information campaigns, because of sexual vagabondage and their supposed hostility toward the use of condoms (Eboko 1996: 138). In following the KAP protocol, national committees produced studies on the sexual practices of such groups in order to design culturally sensitive campaigns capable of dispersing correct information about the virus and the ways of its transmission, confident that, in this way, people would rationally modify their behaviour. Firstly, it is worth noting how such a protocol embodied a specific culturally bound view of the person as a rational being, acting according to a cost/benefit rationale in a social vacuum, as the sole person responsible for his/her behaviour. In this way, risk emerged as an individual matter related to personal choices, rather than a com183

DIvo Quaranta plex process that calls for an adequate understanding of economic, social and political dynamics within which personal action unfolds. Secondly, and directly related to the previous point, the KAP protocol produced a culturalist view of risk, according to which the AIDS epidemic was to be seen as related to the local sexual culture, something to fight against in order to spread the correct information that would allow people to act appropriately. It is nowadays well known that the KAP protocol was destined to fail in addressing the socio-economic processes that produce risk and constrain individual action. In adopting such a protocol, however, national agencies have, among many other things, produced the idea that AIDS is something related to risk groups, rather than a problem affecting the whole social and political body, and that such risk groups are to be analysed in terms of their distance from the normative triptych ideal of masculinity – aristocracy – elderliness (Eboko 2000: 261). In this way, AIDS was explained and described as the problem of those who did not adhere to such a moral and cultural ideal, those who break the moral code. Again we find a specific moral discourse – crafted along international, national and local lines – that blames the sufferers as people responsible for their own affliction and for the contamination of the whole community. It is not surprising that the Cameroon prime minister, on 12 September 2000, claimed in front of representatives of international agencies dealing with AIDS in the country (such as World Bank and UNAIDS): C’est ici le lieu de condamner avec la dernière énergie les comportements criminels d’individus sans scrupules qui, se sachant infectés par le VIH/SIDA, distribuent allègrement la maladie, c’est-à-dire la mort, à des jeunes personnes, victimes innocentes de comportements irresponsables. … Dans cette perspective, n’est-il pas temps qu’une réflexion éthique soit engagée par la communauté médicale dans le sens d’envisager la levée du secret médical dans tous les cas où une personne se sachant infectée par le virus du VIH/SIDA, procéderait volontairement à la contamination d’autres personnes? (Cameroon Tribune, 13 Septembre 2000, in Eboko 2002).

We can once again identify a specific moral discourse producing a view of AIDS sufferers as antisocial beings and as solely responsible for the epidemic. A specific political agenda comes to be articulated 184

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through these processes of cultural construction of AIDS, calling for their deep and careful analysis. Once we move away from the analysis of the institutions involved in fighting HIV/AIDS and we start listening to those most affected by the epidemic, namely the youth, we witness a radical shift in interpreting the epidemic as they make sense of it not in terms of sexual contamination but rather as the outcome of the corruption of the political power (Fassin 1996).

AIDS, Witchcraft and the State If the neo-traditional elite, having emerged through the involvement of social cadets into the local forms of modernity, manages to enter the local power structure along the traditional title system, those who struggle for inclusion feel themselves victims of explicit political strategies (local, as well as national and international) aimed at excluding them from self-realisation. Youth’s understanding of AIDS in Nso’ is certainly to be considered along with their common relative social position, rather than as the expression of a supposed cultural homogeneity. According to them, AIDS is just an invention: either simple propaganda to stop population growth or the intentional spread of the virus to undermine the reproductive capacity of the continent in general, and of the Grassfields in particular. A specific accusation in Nso’ held the national government responsible for allowing Western political agents to realise such a project. In the reasoning of the youth, by doing so the government realises the internal political goal of attacking the Anglophone minority that, since the early 1990s, started fighting for a democratisation of the country. In the past fifteen years, the Anglophone problem has been the most serious political challenge for the national government, with a shift from the federalist issue to that of independence and secession (Konings 1996, 1999; Konings and Nyamnjoh 1997, 2000). In 1990 the Social Democratic Front (SDF), the first opposition party, was founded in Bamenda, the provincial capital of the North West Province. The following year a general strike paralysed the country for almost a year (Ghost Town Operation). During this time, the government’s reaction took the form of military repression: helicopters dropped grenades over Bamenda, the SDF leader was placed 185

DIvo Quaranta under house arrest and most of the North West Province was occupied by military troops. Ever since, a state of emergency has become a reality with which the local population has had to deal. Within this political framework, we can easily understand why many in the Cameroon Grassfields address the AIDS pandemic as a covert testing of a biological weapon, or a governmental conspiracy to wipe out the Anglophone minority of the North West Province. As Nicolas Argenti rightly claims: While these theories can easily be dismissed as specious, it is important to point out that they can only thrive due to the hostile political climate of suspicion and terror that the people of the North West Province perceive themselves to be living in. In a situation of political repression in which transparency is non-existent and one always needs to double-guess the real reason for any policy decision, conspiracy theories become allegories explaining the state as a locus of modern witchcraft activity. (Argenti 2002: 133)

Quite telling is the well-known case of the 1986 Lake Nyos gas disaster, when the release of carbon monoxide engulfed entire communities in its deadly cloud, killing 2,000 people (Leenhardt 1995; Shanklin 1988). In that case a natural disaster was interpreted as man-made. Argenti is again very perspicuous in directing our attention to the fact that having suffered for decades under an autocratic regime, local people now interpret natural misfortunes in terms of witchcraft beliefs according to which there is no such thing as a natural death. While individuals may be accused of causing individual deaths by supernatural means, natural disasters are understood in terms of – and provide an understanding of – the witchcraft of the state understood as the predation of the state upon its people in much the same way as witches gain their power by forfeiting their children to their co-conspirators in the supernatural world. (Argenti 2002: 133)

Sold as slaves in precolonial times, sent as a workforce into the plantations during colonial time, feeling victims of political violence today, the youth adopt the witchcraft idiom to accuse local, national and international elites for having accumulated wealth and power through their marginalisation. Rather than looking at it as a form of traditional misunderstanding – as the KAP protocol would suggest – a deeper analysis allows us to contextualise cultural meanings in the 186

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specific social milieu, showing how this idiom can be seen as a culturally appropriated means to comment on social inequalities and exclusion (Geschiere 1997), and, as such, readily compatible with an approach aimed at identifying the mechanisms by which social inequalities come to be embodied as pathology and risk factors (Farmer 1999, 2003). If we move from the interpretative level, and we start looking at the sexual practices of youth, we can easily identify how sexuality emerges as a field within which economic negotiations between social categories, cultural matters related to gender differences, as well as power inequalities between generations take place. Through such a perspective, youth narratives emerge as culturally specific elements of a local critical epidemiology, whose outcome is a clear accusation against those forces that are local as well as national and international and that impact their lives by limiting their ability for self-realisation. As one informant told me during an intense discussion about the existence or the ‘invention’ of HIV, ‘HIV does not exist because it is part of a conspiracy against third world countries and the unprivileged people. So the virus did not originate here, it was brought here and Africa was accused. … [I]f [the virus] does exist, then we can say that the destruction of the immune system is the outcome of political manoeuvres.’ Bodily signs of suffering clearly emerge as a cultural practice that brings into being issues of historical, political and socio-economic nature. It is certainly not by chance that the increased HIV seroprevalence in the general population ran parallel to the economic crisis that has stricken the country from the mid-1980s onwards, producing a rapid pauperisation of the population and the arousal of all sorts of micro-strategies to face difficulties and risks posed by daily existence. On the one hand, we can talk in many cases of a commoditisation of sexuality as a survival strategy for those who cannot negotiate the terms of their existence. On the other hand, as we have seen, postcolonial social cadets today consider sexuality and the capability of attracting women as a symbolic means to claim their legitimacy to be adult (Quaranta 2003, 2004). Sexuality emerges as a practice of modernity, a cultural form of fashioning one’s own subjectivity and a means of socially positioning oneself in the local politics of personal realisation. Certainly, here we can talk of new forms of subjectivity 187

DIvo Quaranta that are products of, as well as forms of, resistance against specific dominant ideologies and socio-economic processes of deep historical and political nature. The adoption by youth of the witchcraft idiom, therefore, emerges as a moral discourse that points the finger against a body politic that accumulates wealth and power through its social exclusion. In their narratives, waame emerges as a form of suffering produced by a specific social order, characterised by profound inequalities. Likewise, bodily signs of illness can be seen as the personal embodiment of much broader processes: symptoms like kinjuume and kinsenin do not refer simply to personal conditions; they also talk of the social worlds and processes that have produced them. Through the analysis of youth interpretations and experiences, we can see how the body and its states of being are constructed and lived as political commentaries, part of a local political physiology according to which symptoms of illness emerge as metonymies of political and historical forces. One of the most significant dimensions around which this embodied process is centred is the memory of the slave trade, as an interpretative key to the present social and political reality. The specificity of such a memory resides in its embodied dimension (Shaw 2002). In this way illness represents a form of cultural practice, an embodied process of production of meanings, and, therefore, of interpretations in which the body emerges as theatre of a collective memory that is left otherwise unsaid: bodily suffering produces plots of embodied narratives that mingle personal with collective, present with past, local with the global, shaping the socio-personal experience of suffering. Kinjuume and kinsenin then speak about the indignation of the sufferers against those social processes that have historically as well as presently marked their bodies: in this guise they emerge as product, as well as embodied critiques, of hegemony. Once again bodies are not only socially and culturally produced, they are also clearly productive in critically relating to the very processes of their construction/constriction, that is in articulating an embodied commentary on the social order within which they are captured, evoking a precise moral discourse on the social predicament of their existence. Youth sexuality and suffering emerge then as captured between clashing moral discourses and politics of blame, and we can claim 188

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with Ronald Frankenberg (1992: xviii) that ‘[t]he incarnate body (in contrast to the merely biological) is the living site of a contested hegemony of power’.

Bibliography Argenti, N. 1996. ‘The Material Culture of Power in Oku (North West Province Cameroon)’, Ph.D. dissertation. London: University College. ———. 1998. ‘Air Youth: Mimesis, Violence and the State in Cameroon’, The Journal of the Royal Anthropological Institute 4(4): 753–82. ———. 1999. Is This How I Looked When I First Got Here? Pottery and Practice in the Cameroon Grassfields, British Museum, Occasional Paper N. 132. London: Trustees of the British Museum. ———. 2002. ‘Youth in Africa: A Major Resource for Change’, in A. de Waal and N. Argenti (eds), Young Africa. Realising the Rights of Children and Youth. Trenton e Asmara: Africa World Press, Inc., pp. 123–53. Baeke, V. 1996. ‘Water Spirits and Witchcraft: Rituals, Myths and Objects’, in L. De Heusch (ed.), Objects: Signs of Africa. Tervuren: Snoeck-Ducaju and Zoon, pp. 57–92. Balandier, G. 1974. Anthropo-logiques. Paris: Presses Universitaires de France. Bayart, J. F. 1985. L’État au Cameroun. Paris: Presses de la Fondation Nationale des Sciences Politiques. ———. 1989. L’Etat en Afrique: La politique du ventre. Paris: Fayard. Chilver, E. 1990. ‘Thaumaturgy in Contemporary Traditional Religion: The Case of Nso’ in Mid-Century’, Journal of Religion in Africa, 20(3): 226–47. Crossley, N. 1995. ‘Merleau-Ponty, the Elusive Body and Carnal Sociology’, Body and Society 1(1): 43–63. Csordas, T. J. 1990. ‘Embodiment as a Paradigm for Anthropology’, Ethos: Journal of the Society for Psychological Anthropology 18: 5–47. ———. 1994. ‘Introduction: The Body as Representation and Being-in-theWorld’, in T. J. Csordas (ed.), Embodiment and Experience: The Existential Ground of Culture and Self. Cambridge University Press: Cambridge, pp. 1–24. Eboko, F. 1996. ‘L’État Camerounais et les Cadets Sociaux Face à la Pandémie du Sida’, Politique Africaine 64: 135–45. ———. 2000. ‘Risque-Sida, Sexualité et Pouvoirs. La Puissance de l’État en Question’, in G. Courade (ed.), Le désarroi Camerounais. Paris: Karthala, pp. 235–62. ———. 2002. ‘L’Afrique Face au Sida. Un Autre Regard Sur une Inégalité Radicale’, Face a Face 4. Retrieved from http://www.ssd.u-bordeaux2.fr/faf/ derniere_ed/articles/afrique_sida.htm. Farmer, P. 1999. Infections and Inequalities. The Modern Plagues. Berkeley: University of California Press. ———. 2003. Pathologies of Power. Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press. 189

DIvo Quaranta Fassin, D. 1996. ‘Idéologie, Pouvoir et Maladie. Éléments d’une Anthropologie Politique du Sida en Afrique’, in M. Cros (ed.), Les Maux de l’Autre. La Maladie Comme Objet Anthropologique. Paris: L’Harmattan, pp. 65–93. Feher, M. 1989. ‘Introduction’, in M. Feher, R. Naddaff and N. Tazi, Fragments for a History of the Human Body. New York: The MIT Press, pp. 11–17. Fisiy, C. and M. Goheen. 1998. ‘Power and the Quest for Recognition: NeoTraditional Titles among the New Elite in Nso’, Cameroon’, Africa 68(3): 383–402. Fowler, I. 1990. ‘Babungo: A Study of Iron Production, Trade and Power in a Nineteenth Century Ndop Plain Chiefdom’, Ph.D. dissertation. London: University College. Frankenberg, R. 1992. ‘Forword’, in S. Scott et al. (eds), Private Risks and Public Dangers. Aldershot: Avebury, pp. xv–xix. Geschiere, P. 1997. The Modernity of Witchcraft: Politics and the Occult in Postcolonial Africa. Charlottesville and London: University Press of Virginia. Goheen, M. 1996. Men Own the Fields, Women Own the Crops: Gender and Power in the Cameroon Grassfields. Madison: University of Wisconsin Press. Good, B. 1994. Medicine, Rationality, and Experience: An Anthropological Perspective. Cambridge: Cambridge University Press. Kleinman, A., V. Das and M. Lock (eds). 1997. Social Suffering. Berkeley: University of California Press. Konings, P. 1996. ‘Le Problème Anglohpone au Cameroun dans les Années 1990’, Politique Africaine 62: 25–34. ———. 1999. ‘The Anglophone Problem and Chieftaincy in Anglophone Cameroon’, in E.A.B. van Rouveroy van Nieuwaal and R. van Dijk (eds), African Chieftaincy in a New Socio-Political Landscape. Leiden: African Studies Centre, pp. 181–206. Konings, P. and F. Nyamnjoh. 1997. ‘The Anglophone Problem in Cameroon’, The Journal of Modern African Studies 35(2): 207–29. ———. 2000. ‘Construction and Deconstruction: Anglophones or Autochthones?’ The African Anthropologist 7(1): 5–32. Leenhardt, O. 1995. La Catastrophe du lac Nyos au Cameroun. Des Mœurs Scientifiques et Sociales. Paris: L’Harmattan. Maynard, K. 2004. Making Kedjom Medicine. A History of Public Health and Well-Being in Cameroon. Westport: Praeger Publishers. Mbembe, A. 1985. Les Jeunes et L’ordre Politique en Afrique Noire. Paris: L’Harmattan. ———. 1988. Afriques Indociles. Christianisme, Pouvoir et Etat en Société Postcoloniale. Paris: Karthala. Mol, A. 2002. The Body Multiple: Ontology in Medical Practice. London: Duke University Press. Quaranta, I. 2003. ‘AIDS, Sofferenza e Incorporazione della Storia a Nso’ (Provincia del Nord-Ovest del Camerun)’, Annuario di Antropologia 3: 43–74. ———. 2004. ‘Politiche del Silenzio e della Violenza: AIDS e Nuove Soggettività Giovanili a Nso’ (Camerun)’, La Ricerca Folklorica 50: 5–21.

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———. 2006. Corpo, Potere e Malattia. Antropologia e AIDS nei Grassfields del Camerun. Roma: Meltemi. Rowlands, M. 1979. ‘Local and Long Distance Trade and Incipient State Formation on the Bamenda Plateau in the Late Nineteenth Century’, Paideuma 25: 1–19. ———. 1987. ‘Power and Moral Order in Precolonial West Central Africa’, in E. M. Brumfield and T. K. Earle (eds), Specialization, Exchange, and Complex Societies. Cambridge: Cambridge University Press, pp. 30–41. ———. 1998. ‘The Embodiment of Sacred Power in the Cameroon Grassfields’, in K. Kristiansen and M. Rowlands (eds), Social Transformations in Archaeology. Global and Local Perspectives. London: Routledge, pp. 410–28. Shanklin, E. 1988. ‘Beautiful Deadly Lake Nyos; the Explosion and its Aftermath’, Anthropology Today 4(1): 12–14. Shaw, R. 2002. Memories of the Slave Trade: Ritual and the Historical Imagination in Sierra Leone. Chicago: University of Chicago Press. Warnier, J.-P. 1985. Echange, Développements et Hiérarchie dans le Bamenda Précolonial, (Cameroun). Wiesbaden: Franz Steiner Verlag. ———. 1993. L’esprit D’entreprise au Cameroun. Paris: Karthala. ———. 1996. ‘Rebellion, Defection and the Position of Male Cadets: A Neglected Category’, in I. Fowler and D. Zeitlyn, African Crossroads: Intersections between History and Anthropology in Cameroon. Oxford: Berghahn Books, pp. 115–23. Young, A. 1995. The Harmony of Illusions. Inventing Post-Traumatic Stress Disorder. Princeton: Princeton University Press.

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DChapter 9 Gossip, Rumour and Scandal: The Circulation of AIDS Narratives in a Climate of Silence and Secrecy Graeme Reid

Introduction In South Africa AIDS initially affected those on the social margins – a pattern familiar in many parts of the world and typical of the cities of the Western world. Beginning in 1983, gays, drug addicts and sex workers were the first to be infected. Press reports at the onset of the epidemic announced a ‘gay plague’. But this was soon to change. Shortly after the first AIDS cases were diagnosed, migrant workers were subject to screening by mining houses. Large numbers of men from all over the subcontinent were tested for viral antibodies. From the mid 1980s, alarms began to ring as it became clear that the virus was spreading rapidly in the heart of the country’s workforce. By the late 1980s it was apparent that HIV was a problem that would affect everyone regardless of race, class, gender or sexual orientation (Marks 2002; Schneider 2002). The automatic association between gays and AIDS was swiftly dispelled in South Africa. The long-term consequences of this change have been contradictory. Homosexuality and AIDS are not automatically linked in the public imagination, but very little attention has been paid to the specific health risks faced by gay men. This uncoupling or ‘de-gaying’ has had an ambiguous impact within gay communities. While the double stigma of gay male sexuality and AIDS has passed, there is 192

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also a dearth of public health messages aimed at gays and a low level of awareness about AIDS in many gay communities1. Furthermore, male same-sex practices, as a potentially significant vector of transmission in South Africa, have received sparse research attention. There are two sections to this chapter. The first is contextual. It is not my intention to go over the epidemiology of HIV/AIDS in South Africa (see Walker et al. 2004). Rather I will focus much more narrowly on two closely related archival sources to illustrate how in the initial stages of the epidemic in South Africa AIDS impacted on a particular sector of the gay community and that AIDS, homophobia and stigma were closely linked. The second section consists of two case studies and is based on my own fieldwork within two loosely defined gay communities. One is the congregation of an urban-based gay church community and the other a network of gays living in small towns, rural areas and urban peripheries in the Mpumalanga province. In the church community I reflect on stigma and the ways in which AIDS is both acknowledged and denied by members of the congregation. In my study of small towns, I use a diary kept by one of my informants as a resource to reflect on the role of gossip in everyday interaction amongst gays in the ambit of my fieldwork. Based on these two case studies, I focus on ways in which AIDS enters into discourse in a context of silence and denial. Drawing on Foucault I show how silence is fertile ground for the ‘proliferation of discourses’ (1978: 36) about AIDS in the form of gossip, rumour and scandal as well as through the elaboration of a coded way of speaking about AIDS in public (in which innuendo, intonation and allusion play an important part) which demarcates the boundaries between discretion and disclosure. As Foucault (1978) has demonstrated, a ‘proliferation of discourses’ can be expected in a climate of taboo and prohibition. This is particularly pertinent in South Africa, where the topic of AIDS is cloaked by secrets and silences – taboos which determine how, when and in what terms AIDS can and cannot be spoken about. Posel (2005) identifies two contesting currents in the politicisation of sexuality in the post-1994 era – on the one hand, a milieu in which ‘sexuality is boldly and openly on display’ (2005: 132) and, on the other, strong ‘impulses to silence and denial’ (2005: 140). This paradox between openness and concealment, speech and silence is evident in public discussions about homosexuality as well as about AIDS. AIDS and 193

DGraeme Reid homosexuality are both sources of stigma. The social movement that has developed around access to treatment in South Africa provides a strong counter-narrative to secrecy and denial, urging people to get tested and disclose their HIV status. The South Africa Constitution protects people from discrimination on the basis of ‘sexual orientation’, and yet for many, homosexuality remains a source of stigma. The gay and lesbian movement has long advocated coming out as part of a strategy to promote social acceptance and reduce stigma. The tension between openness about sexual orientation and secrecy around AIDS is also evident within gay communities.

Archival Memoirs: a List and a Scrapbook In the mid-1980s John Pegge, then a counselor for the Gay Association of South Africa (GASA), compiled a list of clients who had died of AIDS-related causes in the city of Cape Town. GASA provided a social network for a predominantly middle-class, white, gay male constituency living in urban centres in South Africa. At the time that John Pegge’s list was being compiled, the counseling service offered by GASA-60102 was being inundated with calls from gay men as limited and frightening information about AIDS became available.3 Gay men in other cities around the world had been disproportionately affected, and there was a growing sense of alarm in the GASA constituency living in Cape Town, Johannesburg and other urban centres. The document compiled by John Pegge provides a glimpse into the early years of the epidemic as it unfolded in a particular constituency. His neatly numbered list, now housed at the Gay and Lesbian Archives of South Africa, was compiled under the following heading: NAMES OF CLIENTS OF THE GASA-6010 COUNSELLING SERVICE WHO HAVE DIED FROM AIDS. Pegge’s list consists of three columns of information: number, name and age of death. The first AIDS-related fatality, a twenty-fouryear-old white male, was recorded in 1985. The act of compiling the list, of recording the cause of death, appears, in retrospect, to be an act of memory against forgetting, of asserting the actual cause of death against the tendency prevalent at the time, and commonplace today, towards euphemism and concealment. The record keeper worked from within a community that was particularly affected by AIDS. The neatness and orderliness of the list, as well as the detailed 194

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heading typed in block capitals and underlined, suggest an attempt to contain and order the sense of panic that gripped the gay community in those early years when knowledge of the disease and its transmission was scant, treatment unavailable and the gay community particularly hard hit. Even though homosexuality was illegal at the time, John Pegge managed to get the Department of Health to supply the organisation (GASA-6010) with condoms via a circuitous route. According to those who knew and worked with him, he also made every effort to draw attention to the danger that the epidemic posed to the general public, warnings that went largely unheeded.4 As time went on, the typed list grew and the neat typeface gave way to handwritten names; two deaths a year grew to three a month until the page became too small to contain the number of recorded deaths and what they presaged about the future. After completing this page, John Pegge appears to have abandoned his attempt to maintain this informal death register. Two decades later the Department of Health, the Office of the Presidency, Statistics SA and various non governmental agencies (NGOs) would argue about HIV/AIDS statistics and their accuracy. In February 2005, for example, the South African minister of health, Dr Manto Tshabalala-Msimang, refused to provide any figures relating to HIV and AIDS including the number of people receiving treatment. She was quoted as saying, ‘I never like to talk about figures. Our patient information system is not up to scratch. When I was preparing for this briefing there were different sets of figures, and I said let’s remove the figures.’5 None of these official figures included any specific information on the impact of HIV and AIDS on the gay community. In this respect, the situation in South Africa is similar to elsewhere on the continent: ‘Same-sex transmission of HIV in Africa has been under-counted, under-researched and under-funded’ (Johnson 2007: 103). A closely related document that forms part of the same archival collection is a scrapbook kept by a gay man living in Cape Town who discovered at this time that he was HIV positive. The personal scrapbook includes newspaper reports, information pamphlets and cartoons about HIV and AIDS. Press reports were shamelessly sensationalist and homophobic in linking this mysterious new illness to a murky lifestyle and, at that stage, an illegal set of sexual practices. In a review of HIV/AIDS media coverage, Joe Stein commented: ‘Initial media coverage of the epidemic in South Africa tended to 195

DGraeme Reid feature the gay epidemic to the exclusion of the heterosexual one, such that white gay men remained the face of AIDS long after the extent of the heterosexual epidemic had become apparent’6 (2002: 21). As such, this scrapbook is a powerful indictment of press reporting at the time. Luise White bewails the blurring of rumour and gossip, preferring the earlier anthropological definition of rumour as ‘news that one later learned was false’ (1994: 75). In this respect, the media played the role of rumourmonger and promoted a false sense of security for those who imagined that they were not affected by the epidemic. A striking example of this is a cartoon included in the scrapbook that was clipped from a leading Afrikaans daily newspaper and which sums up public perceptions at the time. The cartoon shows two doctors conferring over a patient’s health. Roughly translated from the Afrikaans, it reads: ‘The SA Institute for Medical

Figure 9.1: The SA Institute for Medical Research is investigating the possibility that AIDS is transmitted by insects or other animals.… How did you get AIDS? A poof-adder bit me.… Hey, what do you want to test here with that arse-o-meter! Source: Rapport, 25 August 1985. 196

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Research is investigating the possibility that AIDS is transmitted by insects or other animals. … How did you get AIDS? A poof-adder bit me. … Hey, what do you want to test here with that arse-o-meter!’7 On the cover of this scrapbook is the note: ‘SCRAP BOOK KEPT BY L. E. WHO DIED IN AUGUST 1986. HE WAS THE 5th CAPETONIAN TO DIE FROM AIDS.’ L. E.’s name is indeed the fifth on the list compiled by John Pegge. Both documents appeared in an exhibition entitled Holdings: Refiguring the Archive held at the University of the Witwatersrand in 1998. When the list went on display at the exhibition, the names were rendered invisible in order to ensure confidentiality and anonymity. While ethically imperative given the nature and origin of the document, the veiling of names also served to reinforce a sense of secrecy and concealment that continues to characterise the epidemic. The curator, Jane Taylor, reflected on the significance of the exhibited items: ‘The two documents refer back to each other and suggest the intensity of the circulation of information between members of a community perceived to be at such imminent risk’ (Hamilton et al. 2002). The scrapbook was compiled when there was little hope for those living with the virus. At the time, AIDS was a death sentence. This knowledge haunts the reader leafing through the scrapbook and trying to see it through the eyes of someone who knew that he was infected with a virus for which there was no effective medical treatment and that was strongly stigmatised. Edwin Cameron, who is an openly gay and HIV positive judge in the Constitutional Court of South Africa, recalled during a stint at Harvard Law School shortly after testing HIV positive in 1986: ‘The east coast newspapers and the bleakly pessimistic gay press of early 1987 fed my sense of horror on a daily basis. They proclaimed the rising death toll, the horrific manifestations of AIDS, their certain culmination in death, the social revulsion the disease almost everywhere evoked’ (2005: 48). The documents show how AIDS initially had a disproportionate impact on a particular sector of South Africa’s gay community – citybased, middle-class white men. It was a community that was mobile and comparatively affluent, but, nevertheless, socially marginal and vulnerable. A myriad of laws clustered around the Immorality Act (Gevisser and Cameron 1995), and its various amendments made homosexuality illegal. Furthermore, a strong social stigma was attached to homosexuality. The spectre of AIDS had the potential of adding 197

DGraeme Reid yet another dimension to an already stigmatised minority – as was seen elsewhere in the world. The gay community made efforts to mobilise in the face of the epidemic, as the work of the counselling service of GASA shows, as well as efforts to make condoms more freely available. Goffman’s (1963) distinction between discredited (those who can assume that the source of their stigma is self-evident) and discreditable (those for whom the source of stigma may be hidden and concealed) is pertinent here. In a context where both gay identity and AIDS are heavily stigmatised and inextricably linked – as was the case in South Africa in the 1980s – someone like L. E. ran the risk of being doubly ‘discredited’.8 Aside from being a dossier of stigma and a catalogue of rumours about AIDS, the scrapbook also represents a technique of ‘information control’ (1963: 91). On the one hand, every scrap of evidence about AIDS appears to be important, and yet the scrapbook itself needed to remain private and hidden, as evidence of L. E.’s HIV status.9 It was a potential source of stigma. Similarly, the list compiled by John Pegge was a dossier that demanded discretion.

‘Your Church Is Sick’: Dealing with HIV/AIDS in a Gay Church Community The Hope and Unity Metropolitan Community Church (HUMCC) grew out of a small, Johannesburg-based prayer group of gay Christians. It was established as a formal Pentecostal congregation in 1994. In part, this development can be understood in the context of the changing political climate which created the space for such an innovative development. But there was also a much more personal reason for the establishment of the church. Also in 1994, the founding pastor, Rev. Tsietsi Thandekiso, had lost his young lover, when he died from ‘ulcers’. The church thus provided an institutional home for the recognition of this relationship and a space for the public expression of grief and mourning, which would not have been possible in other church communities, and certainly not in Reverend Thandekiso’s home church – the Apostolic Faith Mission. For Reverend Thandekiso, the graveside was the birthplace of the church – the point at which an informal fellowship became a congregation. A year after his lover’s death, Reverend Thandekiso was immersed in water in a ritual cleansing that marked the end of a period of mourn198

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ing, as one would do for one’s spouse. The HUMCC was able to officiate over the rites and rituals of burial, healing and cleansing for lesbian and gay people whose relationships were not recognised or sanctified in mainstream churches. It was a role that the HUMCC would fulfil for the Reverend Thandekiso when he died from meningitis, only three years after his lover’s death. The church was founded at a paradoxical moment. The year 1994 marked a period of liberation from discrimination as the first democratic elections took place in South Africa. And yet it was at this time when the impact of the AIDS epidemic was beginning to be acutely felt. Deborah Posel has commented on this cruel twist of fate, linking liberation and death: ‘The political stakes attached to these arguments about talking versus silencing sex have been greatly heightened by the historical conjunction of liberation (the promise of a new life) and the acceleration of the HIV/AIDS epidemic (the spectre of death)’ (2005: 150). The church, in its rituals, sermons and activities, encompassed these contradictory experiences. The exuberant, celebratory style of worship reflected a moment of joyous liberation – the ‘promise of a new life’. And yet the church emerged in response to death – initially a specific death, that of the Reverend’s lover – but possibly, on a deeper level, this was also a response to AIDS – a healing church founded at a point when the AIDS epidemic was beginning to have a devastating impact on the young gay men that formed the core of its initial congregation. The intense spiritual healing sessions in the church community echoed a desire for individual and collective healing under the ‘spectre of death’. Ten years ago I undertook intensive fieldwork in this church community and have maintained ongoing contact with members of the congregation. At its peak it was the largest community-based organisation of black gay men and lesbians in the country. Although regular attendance was modest and only fifty to a hundred congregants attended church services, the HUMCC drew on a community of young black gay men and lesbians that extended far beyond the formal congregation. Some of the congregants drove cars; others struggled to pay for public transport. Some members were employed, a few lucratively so, while most were unemployed. Some lived in the inner-city flatlands of Johannesburg, a handful in middle-class suburbia. Some lived in 199

DGraeme Reid backyard shacks while most congregants lived with their families in small state-built houses in townships on the urban periphery. Almost all congregants maintained ties with other churches as well as the HUMCC. Even when they experienced those churches as alienating and homophobic, they were the churches to which their families belonged and to which many members felt a strong sense of allegiance. In situations where family relations were strained, the church attempted to facilitate communication and reconciliation between church members and their families. Alienation from the family was regarded in the church as particularly hurtful and shameful, and everything was done to try and re-establish bonds between lesbian and gay congregants and their families. In the wake of the founding pastor’s death, two church members took over the role of pastor – Paul Mokgethi and Nokuthula Dhladla, a young woman and fiery preacher who was responsible for a growing lesbian presence in the church. In a context in which homosexuality is often dismissed as both ‘un-African’ and ‘un-Christian’, the church serves a threefold function of reconciling congregants with their sexuality, their religious beliefs and a sense of themselves as African. As this quote from a sermon illustrates: ‘In Africa you are never an individual or a person for yourself. You are because other people are’ (Reverend Thandekiso, sermon: March 17, 1996). By evoking the concept of ubuntu,10 gays and lesbians are discursively reinserted into a shared African community. In interviews and in discussions on the topic with congregants, the idea that homosexuality is alien to ‘traditional culture’ was invariably dismissed as a myth, while secrecy and silence were identified as effective ways of keeping homosexuality out of the public domain. ‘If you ask the old people, homosexuality has been there. It’s just that it was the community’s secret’ (Alpheus, interviewed on 13 February 1996).11 Foucault emphasises the dialectical relationship between silence and various forms of speaking: ‘There is not one but many silences, and they are an integral part of the strategies that underlie and permeate discourses’ (1978: 27). In this respect AIDS discourse in the church community illustrates both silences and their inevitable byproduct: the multitude ways about which AIDS is spoken. During the period of my initial fieldwork, the impact of HIV and AIDS was usually alluded to in church sermons through metaphor or contemporary parable, but rarely addressed explicitly, although there were 200

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some exceptions, as this extract drawn from a sermon illustrates: ‘There is a plague of AIDS hitting us very hard. When people die, they bury you on a Monday. People hide away, they stay at home when they tell you: “You have the disease” (Thandekiso, sermon: March 10, 1996). Reflecting back ten years later on that period, the current pastor of the HUMCC, Paul Mokgethi, remarks: During the years 1994–95 people started talking about HIV and AIDS, but it was not an outspoken thing. There would be gossip in small little corners. ‘Did you hear that so-and-so is HIV positive?’ It was something that was a shock, people had this perception in their minds that you did not have long to live – in a few months you would be dead. That is how it was seen. (Interview, January 2005)

There was, of course, speculation about the death of the founding pastor’s lover at age twenty-three, but the official cause of death was ‘ulcers’. And there were similar rumours when the pastor himself died three years later at age forty-nine. However, beyond the official diagnosis of meningitis, no one knew anything different, and discussions in the church remained within the realm of rumour and gossip. In 2000, one of the pastors revealed that he was HIV positive in a personal testimony delivered to the congregation. It was a watershed moment in the church community and added impetus to the attempts of the church leadership to counteract misconceptions with more accurate information, education and openness about HIV/AIDS. Every Sunday service included a memorial candle lighting ritual as well as some input on HIV/AIDS in a language and register accessible to the congregation. When a prominent member of the church community, Nkosinathi, took seriously ill in 2004, the church leadership was faced with a dilemma. Again rumours circulated about the nature of his illness. At one point Nkosinathi confronted Nomsa, a young woman who was very active in the church, wanting to know how she knew his HIV status. She replied that she had no idea what his status was. He told her that a rumour was circulating in the church that all the people whom she had announced as pall bearers at a recent funeral were HIV positive. Thus when Nkosinathi took very ill, the rumours multiplied. The congregation asked the pastors to speak to Nkosinathi, who by this stage was be201

DGraeme Reid ing cared for by two young members of the church congregation who were themselves uncertain about the nature of his condition. They also wanted to know what was going on. Nkosinathi decided to confide in the pastors, but he did not want others to know. Thus, the pastors were faced with a dilemma. They felt that by confronting him, they had invaded his privacy, and it was his expressed wish that his HIV status not be made public. And yet the congregation was increasingly insistent on knowing what was wrong with Nkosinathi. They decided to tell the two young caregivers what the nature of his illness was, but did not reveal his HIV status to the congregation. When he died two weeks later, at age forty, the pastors were faced with another ethical choice. If they kept quiet about his status and allowed rumour and gossip to do its work, they would be contributing to a climate of secrecy and denial in which stigma would continue to flourish. On the other hand, Nkosinathi had decided not to reveal his HIV status more widely. So important was this to him that, despite being a healthcare worker himself, he had not sought treatment or the support of the church community. Many gay men in the congregation did not want the master of ceremonies, Nomsa, to speak about HIV, as she had done at a recent funeral, and a spokesperson for this group had even contacted her in advance warning her not to do so. When Nkosinathi died the whole thing … the whole issue of confidentiality came up … the whole issue of educating the community. We decided to find out from the family whether they knew what was happening with Nkosinathi We planned to hold an educational service that encouraged members of the congregation to seek voluntary testing and counselling. (Paul Mokgethi interview, January 2005)

The family, while aware of the fact that Nkosinathi was gay, had no idea about his HIV status. However, they gave their blessing to the church to proceed with an ‘educational service’ in which Nkosinathi’s HIV status would be made public. The master of ceremonies used her platform to proselytise about the impact of HIV/AIDS on the church community. She urged gay men, in particular, to take care of themselves and encouraged them to be tested and to seek treatment. Three gay men, all of them affiliated to the church, were being buried on that particular Saturday in May 2004. As Nomsa explained, ‘We had to split. Some of us went to this funeral, others to that 202

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one.’ Nomsa said that not one of the many speakers at Nkosinathi’s funeral even alluded to AIDS. So, in her role as master of ceremonies, she challenged the packed hall, pointing out that many of the mourners at that funeral knew of two other gay men who were being buried that same day. ‘How many of us know our status?’ In a hall of hundreds, fifteen hands were raised. Nomsa urged everyone in the hall to ‘go and get tested on Monday’. Queues and waiting lists for life-saving drugs were getting longer, she warned, and members of the congregation who needed treatment should ensure that they received it in time. Her intervention caused an uproar, not from the family, but from members of the church community – specifically from gay men. After the funeral the church pastors had to pacify disgruntled and disaffected members of the congregation. The people who were really angry were those who were dealing with their own issues … people who know within themselves that they were positive. They were battling within themselves with this whole thing of stigma and being open. They felt that Nomsa was bashing them – talking about their own situation. (Paul Mokgethi interview, January 2005)

Nomsa’s interventions became a scandal, and gay men started abandoning the church in droves. Nomsa decided that the church was too important to be jeopardised by her unwelcome presence, so she decided to leave the church community. At the time of the interview, she expressed the hope that, in time, she would be able to return. Nomsa said that people in the church did not mind the ‘soft things’ like lighting candles and saying prayers but did not like a hard, confrontational and personal approach to the disease. She said that her experience had been ironic because since the controversy, she had become something of ‘an AIDS icon’ in the gay community. She became the person who was called when someone was very ill or had just learned that they were HIV positive. She was asked to visit members of the congregation who were ailing in hospital. She also said that she realised that her exile from the church community did not signify anything personal against her – ‘when we meet in the street we hug and chat’ – but she remains excluded and unwelcome in the church community when it meets as a group. As his own health deteriorated, Nkosinathi prayed, ‘God help us, Your church is sick’. He could not say ‘I am sick’, said Nomsa. ‘He spoke about the church, but not about himself.’ 203

DGraeme Reid There was a considerable amount of information and talk about HIV in the church community. Only a fraction of this was public discourse – sermons, personal testimonies and the kinds of interventions that Nomsa made from the pulpit. Some of it was verbal, and some took place in the realm of ritual – healing practices, collective prayer and funeral rites. Aside from what was public and shared by the congregants, there was also an undercurrent of gossip, rumour and scandal – the undertow of the taboos, silences and stigmas that surrounded frank and open discussion about HIV/AIDS. The experience of the church also demonstrated that there were legitimate forums and ways of speaking about AIDS and there were also those that were seen as highly inappropriate, as Nomsa’s experience showed. While general discussions about AIDS and safe-sex practices were acceptable within the confines of the church community, public discussions beyond the confines of the church congregation were not. This was especially so when congregants were directly confronted – when the abstraction of AIDS became personalised, as when the congregation was confronted about testing. There was no shortage of information about AIDS in the church community – on prevention strategies, treatment options, modes of transmission. Gossip, rumour and scandal were some of the important ways in which this information circulated.

Small-Town Ladies and Gents During the same period that these funerals were taking place in the HUMCC in Johannesburg, I conducted fieldwork in the Mpumalanga province of South Africa in 2004–05.12 My fieldwork base was in Wesselton – a historically black township in the town of Ermelo. Ermelo is a mining and agricultural center in the region with a population of about 50,00013 and is located about 250 kilometers to the east of Johannesburg. As an economic center Ermelo is one of the larger towns in the region. It is surrounded by countryside – agricultural land and mining enterprises. As a transit point to the Kruger National Park, it is also a popular stopover for tourists. The town remains typically divided along the lines of apartheid-era planners. By and large, residential areas continue to be racially divided. Wesselton township, a black area, is located on the outskirts of the historically white town. 204

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With few exceptions, my informants lived in overcrowded townships similar to Wesselton – a feature of small towns throughout the region. Economically able individuals rented rooms in the township. Others, especially younger gays who were unemployed, would congregate at older gays’ homes, or socialise at gay-run hair saloons. A few gays had administrative or clerical jobs in local government departments, while others were informally employed as hairstylists or as healers. Only one gay had a middle-level government job which enabled him to buy a car and rent a backroom in the historically white section of town. One of the most immediate and striking features in my fieldwork experience was the pivotal role that gender played, both in expressing individual identities as ‘masculine’ or ‘feminine’, and in the ways that this dichotomy manifested itself in interpersonal relationships. In the areas where I undertook fieldwork, masculine gays were an oxymoron: to be gay was to be effeminate. It was the boyfriends of gays who were masculine, and they rarely regarded themselves as gay. Indeed, social and sexual norms conspired to keep them ‘straight’. The terms ‘ladies’ and ‘gents’14 referred to this sharp distinction between ‘masculine’ and ‘feminine’. I initially heard these terms in the context of jolly talk, the local gay slang, and they were used pervasively in the region. Ladies and gents, it seemed, were fundamental to the sexual and social organisation of relationships. Difference (in this case articulated along gender lines) was fundamental to the domestic structuring and social ordering of relationships and was also essential to erotic tension and sexual charge. Ladies and gents were imaginative ideals, and in daily practice there was considerable movement between these categories. Nevertheless, as ideal types, they exerted a powerful influence on the possibilities that existed for self-identification. Typically ladies occupied traditional feminine spheres both at work and at home. Ladies were seen to be relatively affluent and were often the victims of muggings, bag-snatchings and cell phone-theft. Ladies organised social functions, they took care of the detailed planning of events, and did the housework – they cooked and cleaned and ironed. Amongst themselves they gossiped about each other and about their men in the form of jolly talk. Ladies often provided materially for the gents. Ladies were understandably wary of ‘golddiggers,’ a frequent topic in jolly talk. That a lady should be faithful to one gent was a social 205

DGraeme Reid convention. But in practice this seldom happened. Unlike gents, ladies needed to be discrete about their infidelities or they risked being beaten. Gents, on the other hand, were not regarded as gay. Gents were boyfriends to gays and behaved much like some of the other men in the area. They usually had irregular, poorly paid manual work. Drinking was an important part of their entertainment. They exercised control over and occasionally disciplined, punished and beat their ladies. Their social status was predicated on maintaining a penetrative role in sexual intercourse. For the ladies and gents, gender identity was constituted through repeated performances of feminine and masculine norms and roles (Butler 1993) and naturalised through everyday social practice (Bourdieu 2001). The gendered ordering of relationships and the blurring of boundaries between homosexual and heterosexual intercourse is an area that is under-researched. It has significant implications for safe-sex practices within same-sex relationships. It is also another pathway of HIV transmission, especially when male-male sexual activity is kept secret from wives or girlfriends. Public health discourse has popularised the phrase ‘men who have sex with men’ to target those, like the gents, who do not regard themselves as gay but who have sex with other men. This understanding assumes a neat division between sex and gender which is clearly not the case. After all gents don’t have sex with men, but with ladies. The categories ‘ladies’ and ‘gents’ give rise to a specific set of sexual practices which have implications for the transmission of HIV. This is an urgent question in regions where, although there is a strong awareness of HIV, burials of young men and women who have died of mysterious ailments take place on a weekly basis. There are many factors that mitigate against effective HIV prevention strategies. One of these is the perception, especially amongst the gents, that having sex with a lady poses less of a health risk than having sex with a woman. This is apparently because of the fact that the AIDS pandemic in southern Africa is driven primarily by heterosexual transmission. As a gay man pointed out, ‘People here say they want to be in love with a gay. Even though statistics show that straights are more infected, we are at high risk.’ There is also an historical precedent for this idea originating in men’s hostels accommodating migrant labourers on the mines. A common rationale 206

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for male same-sex relationships was the danger of contracting venereal diseases from townswomen or female prostitutes (Harries 1990; Moodie 1989; van Onselen 1983). Niehaus’s research amongst male migrant workers confirms this belief. He quotes an informant: ‘With women there is also AIDS. They say it is safe with a young boy. He won’t transfer any diseases to you’ (2002: 85). Statistics which do not take same-sex practices into account and public health messages that focus only on the ‘charmed circle’ and avoid the ‘outer limits’ (Rubin 1993) of sexuality have had the unintended consequence of perpetuating a myth that sex between men is safer than heterosexual intercourse.

The Gay Gossip Column: A Diary In this research setting, namely Ermelo and surrounding small towns, gossip was an integral feature of talk amongst gays. I soon learned that ‘GGC’ was an acronym for ‘Gay Gossip Column’, and I became an avid recipient of this informal communication about gay life in the region. Whenever I returned to Ermelo, I caught up on events through these gossip sessions that usually took place at the home of my neighbour in Wesselton. Noting my ongoing interest in gossip as well as the salacious details of scandal, one of my informants suggested that he kept a ‘gossip diary’. I encouraged him to do so and gave him one of my fieldwork note books. Over a period of six months, beginning in the latter part of 2004, he kept a regular ‘gossip diary’. As his diary reveals, sex was the main topic for gossip. This was hardly surprising. After all, sexual practices – in this particular case receptive anal intercourse – distinguished gays from others in this community and was integral to their self-identification as ‘ladies’. Being gay in this context could be a site of stigma and, equally but paradoxically, a source of celebrity status, as evident amongst the highly popular, flamboyant hairstylists who worked in the region. It was also a forum for self-identification and political organisation, as the emergent activism demonstrated. As I have noted, sexual practice was a key component of sexual identity – to be a ‘lady’ was to be sexually receptive and gay; while a ‘gent’, by definition, was sexually active and straight. Sex was a source of jealousy and rivalry – between gays and their boyfriends, between gents and their girlfriends as well 207

DGraeme Reid as between gays and their gents’ girlfriends. Sex was a source of legal problems, arising from sexual assault, or, in one instance, age of consent legislation. Sex was a site of pleasure – the who, how, where and when of sexual encounters that were told, retold and savoured in gossip. And increasingly sex was also associated with AIDS – with illness, disease and death. The gossip diary is a peculiar artefact. In one sense, it goes against the grain of gossip. Gossip evolves in the telling (Abrahams 1970). This diary captures a snapshot of gossip at a particular time and place. One of the main purposes of gossip is to form bonds between the tellers – that is, in castigating others, one redeems the self and strengthens common bonds within the gossiping group (Gluckman 1963; Handelman 1973; Paine 1967). This is apparent in the diary, but there is also another level which is ostensibly directed at the gossiping group, but which is actually addressed to me, the reader and interpreter of the diary. The diarist writes about himself in the third person, and whenever murky moral issues come up or where the bounds of sexual propriety need to be drawn, it is this voice, in the third person, that maintains moral decorum. It is the writer who counsels, advises and suggests solutions in the subtext of the gossip diary. So the writer, by virtue of being a documenter and recorder of events, is also set apart from the gossip group – he is both participant and observer. And I, in turn, become an active, albeit vicarious, participant in the gossip. It is with me that the diarist was establishing bonds of commonality through gossip – based on perceived ideas about of what I would approve and to what I would subscribe. He is presenting a version of himself to me through his description of the gossip of others.15 This dynamic leads White to suggest that ‘a self is revealed in talking about others at least as much as it is revealed in introspection’ (1994: 82). It would be disloyal to the genre of gossip to try and unravel the veracity of these stories. The stories that I recount here are also recorded in my fieldnotes; they emerge from actual events, embellished and elaborated to varying degrees through gossip. But I am more interested in what gossip and rumour reveal about the time in which they emerge and the place where they circulate – what stories are told, why they are told and what effects they have on the participants. The diary opens with a discussion about a desirable gent, who had recently moved to the area. He was something of a ‘ladies’ man. 208

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E is dating L and M and M found out today. G feels that E is using gay people because he also dated S and N. N broke up with him although we ‘don’t know the reason’. E dated M, L and S, so S ended his relationship with E. For now E is dating M and L.

Three days later, on Sunday 27 June 2004, the gossip continued amongst a small group of ladies with some overlap and some differences in the composition of the group. There is a gay femme by the name of Z, from Empangeni. He is E’s lover from when they were both living in Empangeni. … Soon he will be staying with E. … Z has a girlfriend with whom he has a baby. Z knows that E has a girlfriend as well and he doesn’t mind. Z knows that E was going out with M, S and L, but doesn’t mind.

Going back to Thursday’s entries, we also learn about a gent who has died ‘because he was sick’. The group of ladies were discussing who had slept with the deceased. Five ladies were mentioned, three of them were part of the gossiping group. One of them said that he was worried about his HIV status ‘because he slept with that guy’. He asked if the ladies would accompany him to the clinic. The writer advised him ‘to be sure first before he goes for HIV test’. The caution here was to be sure that he was ready to receive an HIV-positive result. In the face of this reluctance, few ‘ladies’ knew their HIV status. In some cases individuals had been tested but failed to collect their results. For many, testing came too late, when their immune systems were already unable to respond to treatment. On the following Sunday the diary also reported on a visit to Abraham, who was in training to become a traditional healer (sangoma). Abraham was ‘very sick’. His illness, his dreams and those of his close relatives, as well as the instructions of a traditional healer, convinced him that he should go for training as a sangoma, although he did this reluctantly. We learn that ‘Abraham is little uncomfortable where he trains because the muti (medicine) he drinks make him want to have sex’. We learn that Abraham was going out with S’fiso but they broke up. S’fiso is now getting married to a woman. Another of S’fiso’s male lovers came to A, ‘crying and asking for advice because he was going out with S’fiso and S’fiso is getting married. He said that he knew nothing about gay life but S’fiso taught him. But now S’fiso is getting married.’ We also learn that N (who was sleeping with E) had 209

DGraeme Reid an affair with S’fiso. Much later, in January 2005, the diary recounts the story of Abraham’s death: Abraham finally passed away. Before he died he ran away from where he was being trained to become a sangoma… His feet were swollen and he was very sick. After that he died. What makes this GGC very hot is that S’fiso had many sexual favours with Abraham. Now Abraham is dead and people suspects that he was HIV positive.

Abraham was buried in his home district, a rural enclave near South Africa’s border with Swaziland. He was twenty-nine years old. There were several rumours and explanations surrounding his death, each vying for dominance. His parents believed it was because he had abandoned his training as a traditional healer. Others blamed Abraham’s father’s first wife, who had been unable to bear children – she had bewitched Abraham, so the rumour went, out of jealousy and resentment. In July 2004, the diarist visited another gay who had been assaulted by his boyfriend. ‘T’s throat is sore, he has been strangled by his boyfriend.’ T had caught his boyfriend and a girlfriend together, had got upset and made a scene. The boyfriend had got angry and assaulted T. T says that his boyfriend is habitually violent, that he regularly beats him, that he has nearly killed him twice. He also has many girlfriends. ‘He said that he is scared of HIV because his boyfriend once had a STD.’ There are two other aspects from the diary entries to which I would like to draw attention. One is the irony that those working in organisations seeking to raise awareness about AIDS are perceived to be HIV positive and regarded with suspicion. A striking example was when one of the ‘ladies’ went to Johannesburg for the weekend and slept with a man, only to discover that he worked in an organisation that conducted AIDS research. The diarist remarks ‘he is suspecting that the guy may be HIV positive.’ The second aspect is what Mark Hunter (2002) has referred to as ‘the materiality of everyday sex’, or transactional sex. A good deal of gossip revolves around those ‘ladies’ who are marginally better off and one in particular who has a well-paying government job. His new car is regarded as an asset to draw the most handsome men. It is rumoured that he exploits his position in order to seduce recruits in exchange for promises of work. His accoutrements are subject to ruth210

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less and ongoing scrutiny. We also learn that his ‘new car has made the “girls” life easier. Why? Because now they can go to Truck Inn16 to look for men. [They] always get men when they go to Truck Inn.’ ‘Being sick’ and ‘very sick’ become euphemisms for AIDS-related illnesses. Unexplained deaths that were attributed to improbable ailments, such as ‘a boil on the neck’, or illnesses that are not normally life-threatening, for example influenza, were coded ways of knowing without knowing and saying without saying. The tone, or intonation of the phrase ‘very sick’, implied the likely underlying cause, even in a context where HIV/AIDS was seldom mentioned by name. For example, when hairstylist Dumisani died in the prime of his youth and at the point when he was establishing a reputation as a ‘celebrity stylist’, the only (possibly incidental) reference to HIV was a small lapel pin worn on the jacket of the presiding pastor. At the funeral I asked several of Dumisani’s close friends what he had died of. They gave me knowing, evasive looks, as if I were asking a trick question and said things like ‘You know’ or ‘I am not saying anything’. I asked three of his clients, young women who traveled with me to the cemetery and back. They looked at each other. There was an awkward silence and then one answered for all of them, ‘We don’t know’. They did know. But no one was saying. These were strange conversations because Dumisani’s gay friends knew that I knew that they knew – it was an example of the way in which the unspoken revealed ‘eloquent assumptions about local knowledge’ (White 1994: 87). The meaning of what is left unsaid, or partially spoken, or merely alluded to is immediately apparent to those who are in the know. Gossip can serve to bolster a moral universe in which it is others that are vulnerable to HIV infection. However, it is also a way of communicating about the disease in a context in which it is cloaked in silence and denial. As I have shown, when ladies gossip about sexual networks and one member of the network dies, it is a stark reminder of their own vulnerability. Gossip also serves to confirm the impact that HIV/AIDS is having in the area. Furthermore, gossip is changing. In 2006, for the first time, I started to hear gossip of a different order. No longer was it a speculation about who was ‘ill’ or ‘very ill’ or ‘in hospital’, but I was told T had a cd4-count of over 200 while C had a cd4-count of 65 and also had tuberculosis. As treatment became more widely available through government hospitals, the nature of the gossip reflected this more hopeful turn. 211

DGraeme Reid Conclusion The nature of stigma has been shaped by the history of the epidemic in South Africa. At first, in the early 1980s, gay men were disproportionately affected by HIV. The automatic association between homosexuality and AIDS was weakened as HIV/AIDS became primarily a heterosexual epidemic. This change in perception has had ambiguous consequences. On the one hand the double stigma of homosexuality and AIDS has been avoided, and yet public health messaging has virtually ignored the needs of gay men. While no statistics are available on HIV prevalence amongst gay men, it is apparent that this community is disproportionately affected. In the church community, stigma mitigates against early diagnosis and treatment, while denial competes with disclosure. Ways of talking about HIV/AIDS are both facilitated and constrained by religious convention. In the examples drawn from less urban communities, the blurring of boundaries between heterosexual and homosexual and the gendered structuring of relationships have significant implications for safe-sex practices as well as for appropriate public health messaging. In a context of silence, gossip plays a dual role. It can be used as a marker of difference that feeds into fantasies of immunity – AIDS happens to others – but not to us. Paradoxically, gossip is also a vital means by which information about AIDS is communicated in these gay communities.

Notes The research on which this chapter is based was funded by the Netherlands Foundation for the Advancement of Tropical Research (WOTRO) of the Netherlands Organisation for Scientific Research (NWO). 1. My research focus is on gay men. Gender-based violence increases women’s vulnerability to HIV infection. Research suggests that lesbians may be specifically targeted with ‘corrective rape’ (Reid and Dirsuweit 2002) and are placed at a high risk for HIV infection (Johnson 2007). 2. GASA-6010 was a counseling service for gay men based in Cape Town. 3. This can be gleaned from the logbooks kept by GASA-6010 at the time (see archival reference). 4. AIDS activism in South Africa has drawn on models developed by AIDS activists elsewhere, especially by gay communities in the USA and Europe, but AIDS activism in South Africa has also been heavily influenced by a history of anti-apartheid political activism (see Schneider 2002: 155). 5. Saturday Star, 19 February 2005. 212

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6. See also Gevisser 1995; Grundling 2001; Stein 2001; and Rispel 2003. 7. Rapport, 25 August 1985. 8. Parker and Aggleton have suggested that a more appropriate model of stigma, in a context of HIV/AIDS, is one that focuses on social inequality and power dynamics, rather than on Goffman’s (1963) individual ‘spoiled identity’ (Parker and Aggleton 2003). 9. I was struck by the strong resonance between the scrapbook and one kept by a leader of the homosexual Law Reform movement in the late 1960s, Joe Garmeson, who kept a meticulous record of every press article about homosexuality. In many instances his scrapbook, like L. E.’s, provides a record of public scandals and sensationalist reporting – a document testifying to harsh public opinion on homosexuality. Similarly L. E.’s scrapbook documents public perceptions of AIDS in a particular era through reports that were systematically pessimistic, sensationalist or homophobic. 10. An Nguni word that, loosely translated, means humanity, compassion and fellow feeling. 11. Epprecht (2004) makes a similar point about same-sex sexuality. He suggests that this was accepted as an unremarkable part of male sexuality provided that there was a high degree of discretion. Niehaus agrees, but questions the extent to which this was a hidden practice suggesting that the veil of discretion is ‘less than opaque’ (2002: 93). 12. This was the period of intensive fieldwork, although some of my data comes from before that time, and some from later. 13. This according to figures derived from the last official census in 2001. Mpumalanga province had a population of about 3 million, of a total national population of about 45 million at the time of the 2001 census. 14. ‘Ladies’ and ‘gents’ were used interchangeably with ‘gay’ and ‘straight’. Although the use of the terms ‘ladies’ and ‘gents’ tended to be in the light bantering form of ‘jolly talk’ and, as such, came across as one of many ways in which gender was engaged with in a humorous and sometimes selfdepreciating way. Whereas the terms ‘gay’ and ‘straight’ would be used in the context of more serious discussions – when engaging with outsiders, for example. 15. For further discussion of this dynamic see Wilson 1974. 16. This refers to a truck stop where some ladies solicit sex for cash.

Bibliography Abrahams, R.D. 1970. ‘A Performance-Centred Approach to Gossip’, Man 5(2): 290–301. Bourdieu, P. 2001. Masculine Domination. Stanford: Stanford University Press. Butler, J. 1993. Bodies that Matter. New York and London: Routledge. Cameron, E. 2005. Witness to AIDS. Cape Town: Tafelberg. Epprecht, M. 2004. Hungochani. The History of a Dissident Sexuality in Southern Africa. Montreal: Queen’s University Press. 213

DGraeme Reid Foucault, M. 1978. The History of Sexuality, volume 1: An Introduction. New York: Vintage. Gevisser, M. 1995. ‘AIDS and the Media’, AIDS Bulletin 4(1): 6–9. Gevisser, M. and E. Cameron (eds). 1994. Defiant Desire. Gay and Lesbian Lives in South Africa. Johannesburg: Ravan Press. Goffman, E. 1963. Stigma. Notes on the Management of Spoiled Identity. New York: Jason Aronson. Grundlingh, L. 2001. ‘A Critical Historical Analysis of Government Responses to HIV/AIDS in South Africa as Reported in the Media, 1983–1994’, AIDS in Context Conference, Johannesburg. Hamilton C., et al. 2002. Refiguring the Archive. Cape Town: David Philip. Handelman, D. 1973. ‘Gossip in Encounters: The Transmission of Information in a Bounded Social Setting’, Man 8(2): 210–27. Harries, P. 1990. ‘Symbols and Sexuality: Culture and Identity in the Early Witwatersrand Mines’, Gender and History 11(3): 318–36. Hunter, M. 2002. ‘The Materiality of Everyday Sex: Thinking beyond “Prostitution”’, African Studies 61(1): 99–120. Johnson, C. A. 2007. ‘Off the Map. How HIV/AIDS Programming is Failing Same-Sex Practicing People in Africa’, New York: International Gay and Lesbian Human Rights Commission. Marks, S. 2002. ‘An Epidemic Waiting to Happen? The Spread of HIV/AIDS in South Africa in Social and Historical Perspective’, African Studies 6(1): 13–26. Moodie, D. 1989. ‘Migrancy and Male Sexuality on the South African Gold Mines’, in M. Duberman, M. Vicinus and G. Chauncey (eds), Hidden From History. Reclaiming the Gay and Lesbian Past. New York: New American Library. Niehaus, I. 2002. ‘Renegotiating Masculinity in the South African Lowveld: Narratives of Male-Male Sex in Labour Compounds and in Prisons’, African Studies 6(1): 77–97. Paine, R. 1967. ‘What Is Gossip About? An Alternative Hypothesis’, Man 2(2): 278–85. Parker, R. and P. Aggleton. 2003. ‘HIV and AIDS-Related Stigma and Discrimination: A Conceptual Framework and Implication for Action’, Social Science and Medicine 77: 13–24. Phillips, O. (2004). ‘The Invisible Presence of Homosexuality: Implications for HIV/AIDS and Rights in Southern Africa’ in E. Kalipeni, et al (eds) HIV and AIDS in Africa: Beyond Epidemiology. Oxford: Blackwell. Posel, D. 2004. ‘Getting the Nation Talking about Sex: Reflections on the Discursive Constitution of Sexuality in South Africa since 1994’. Agenda 62: 53–63. ———. 2005. ‘Sex, Death and the Fate of the Nation: Reflections on the Politicization of Sexuality in Post-Apartheid South Africa’, Africa 75(2): 125–53. Rapport, 25 August 1985.

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Reid, G. and T. Dirsuweit. 2002. ‘Understanding Systemic Violence. Understanding Homophobic Attacks in Johannesburg and Its Surrounds’, Urban Forum 13(3): 99–126. Rispel, L. 2003. ‘The Grammar of Threat and Security in HIV/AIDS. An Analysis of the South African Government’s Discourse on HIV and AIDS between 1998–2002’, Masters thesis. Department of Management and Economics, Linköping University. Rubin, G. 1993. ‘Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality’, in H. Abelove, A. Barale and D. M. Halperin (eds), The Lesbian and Gay Studies Reader. New York and London: Routledge. Schneider, H. 2002. ‘On the Fault-Line: The Politics of AIDS Policy in Contemporary South Africa’, African Studies 6(1): 145–68. Stein, J. 2002. What’s News: Perspectives on HIV/AIDS in the South African Media. Johannesburg: Centre for AIDS Development, Research and Evaluation (CADRE). van Onselen, C. 1983. The Small Matter of a Horse: The Life of Nongoloza Mathebula, 1864–1948. Johannesburg: Ravan Press. Walker, L., G. Reid, and M. Cornell. 2004. Waiting to Happen: HIV/AIDS in South Africa. Double Storey Juta, Cape Town / Lynne Riener, Colorado. White, L. 1994. ‘Between Gluckman and Foucault: Historicizing Rumour and Gossip’, Social Dynamics 20(1):75–92. Wilson, P.J. 1974. ‘Filcher of Good Names: An Enquiry into Anthropological Gossip’, Man 9(1): 93–102.

Archival Sources AM 2560 GAY and Lesbian Organisation of the Witwatersrand (GLOW), Gay and Lesbian Archives of South Africa, UWL. AM 2974 TRIANGLE Project, Gay and Lesbian Archives of South Africa, UWL. AM 2733 HOPE and Unity Metropolitan and Community Church (HUMCC), Gay and Lesbian Archives of South Africa, UWL. AM 2581 MCGEARY, Barry, Gay and Lesbian Archives of South Africa, UWL.

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III Experiences of Grief, Death and Pain

DChapter 10 ‘We Are Tired of Mourning!’ The Economy of Death and Bereavement in a Time of AIDS Liv Haram

[T]he living, the dead, and those yet unborn, forming a moral entity with common concerns and one fate. The conduct and thought of the living affect the well-being and peace of the dead, and, conversely, the disturbance and neglect of the dead trouble those alive. Proper and sustained relations between these two spheres ensure the future by maintaining the birth of future generations. (Beidelman 1993: 105) I shall begin this chapter with an event that occurred in October 2004 when I conducted anthropological fieldwork, which I have been doing intermittently since 1989, among the Meru who live on the slopes of Mount Meru immediately east of Arusha town in northern Tanzania (Haram 1999, 2004, 2005a, 2005b). Together with my host family and a neighbouring woman, Mama Martha, I was having morning tea when lamenting cries cut through the air: ‘Ouiii-ouiii-ouuiii-ouii!’ We all shivered, and with despair, Mama Martha announced what we all feared, namely that yet another person had died. While some left to inquire why someone had ‘cried in pain’ (hiishira mayowe), Mama Martha and I remained and, upon my request, she began telling me about the many funerals she had taken part in recently.1 Listening more closely to Mama Martha’s involvement, I discovered that she 219

DLiv Haram had attended nine funerals during the last fourteen days. Whereas four people had died due to ‘old age’ (uzee), another four had died of AIDS, and one had been murdered. Mama Martha’s participation in the funerals, her roles and duties, varied according to her relationship with the deceased. At some of the funerals, she participated as a visiting mourner by paying her respect and ‘condolences’ (kwasha) either as a neighbour, a friend or by accompanying a neighbouring friend who was a close relative of the deceased. At other funerals she participated as an in-law of the deceased’s family; that is, she participated actively by cooking and serving food for three days, sometimes longer. At yet other funerals where close kin of her own lineage had died, she mourned the dead as a ‘nlifu’; a daughter of the homestead, and was restricted from doing any kind of work. Whether she participated as a neighbour, a friend or a close kin of the deceased, she would always contribute with money or, more commonly for women, with some food. During the last fourteen days, Mama Martha had spent more than ten days at funerals. Soon some returned with information that yet another person had died in their neighbourhood. This time it was an elderly woman, and we all felt relieved. After all, it was, a ‘good death’: the deceased was old and had given birth to many children and had been blessed with grandchildren and even great-grandchildren. For Mama Martha, however, another death meant more work and further contribution of her scarce time and money. In the coming funeral, she would participate as an in-law to the deceased, and thus she would have to cook for at least three or four days and contribute with some food and preferably with some money as well. Mama Martha, aged fifty-five, is a married woman with three grown up but yet unmarried daughters. Like most Meru she and her husband are small farmers cultivating coffee for sale and beans and bananas and some vegetables for home consumption. Twice a week Mama Martha sells tomatoes at the nearby market. Talking about her participation, Mama Martha did not openly complain this morning while we were sitting together, but she counted the days on which she was supposed to be at the market. Although she does not make much profit through the sale of tomatoes, for a poor and marginalised household economy such as hers, it makes the difference. Now she feared that she had lost her customers, and with despair, Mama Martha sighed, ‘What is happening? Nowadays 220

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people are dying everyday: we used to bury only old people, but now our young ones are dying “ovyoo-ovyoo” [ovyoo means recklessly, at random and saying ‘ovyoo-ovyoo’ underscores the meaning]. Cars are bringing coffins home everyday! I am tired of mourning!’ Then she added, ‘I will lose my customers!’ Obviously, Mama Martha had her reasons to be tired and dejected. In this chapter, I shall explore how the Meru explain and manage the abrupt increase in deaths, how they organise funerary ceremonies, and how they are getting by economically and emotionally in such a strained situation. When I began conducting research in this area in 1989, the HIV prevalence rate was roughly 7 per cent in Arusha town, 3 per cent in the semi-urban areas, and 1.5 per cent in the rural areas (Mnyika et al. 1994; 1996). At that time the death rate was hardly influenced by AIDS deaths, but in the course of the 1990s and early 2000, it increased rapidly and in certain areas in Tanzania it reached 20 per cent and above. Although more recent data now indicate that the prevalence rate has dropped considerably, to approximately 8 per cent, the epidemic has a wider variation geographically, between the sexes and between age groups (UNAIDS/ WHO 2002; 2008). Considering that those who are sick and in need of care today were infected five to ten years ago, the need of care for people living with AIDS and the burden for their families to bury them will increase much in the coming years. It is likely that incidences of AIDS will more than double.2 Dejected and weary, people explain while pointing in different directions: ‘Yesterday we buried someone over there, today we are burying someone here, and tomorrow we will be burying yet another person over there. At times we have to “break the mourning” [ikwiimbo rembo] too early at one funeral only to rush to attend to another funeral!’ When talking with people about the current situation, most underscore, however, that the increase in deaths and the ongoing changes in the funerary practises, which will soon be examined, are not due to just AIDS, but are closely associated with social change in general and more particularly with their notion of ‘modern life’ and ‘development’ – referred to by the commonly used Swahili term maendeleo (meaning ‘progress’ and ‘development’). Like most people in East Africa, the Meru associate this rapid increase in death with maendeleo, such as, spatial mobility causing traffic accidents, but it is also 221

DLiv Haram due to a ‘dangerous mixing of people [different ethnic groups]’ not only sexually but also socially. The increase in the mortality rate is also perceived to be caused by other types of maendeleo, such as, an increase in certain diseases held to be due to excessive drinking of alcohol and to the smoking of nicotine and marijuana. But the increase in death is suspected, above all, to be due to moral disorders and, in particular, disordered sexuality which ultimately causes AIDS or, as it is often called, ‘the disease of these days’ (ugonjwa wa kisasa). People generally perceive a close causal link between ‘modern life’ (maendeleo), and a consequently disordered and displaced sexuality and a display of money and wealth. Young and old are concerned about the lack of respectability and will generally refer to the demise of the age-grade system which should guide the young generation about how, when and with whom to mix socially and sexually – dictated by the notions of ‘respect’ (wiindi) and ‘shame’ (usutu). Thus, this cultural logic links AIDS to a product of modern life (Setel 1999; Dilger 2003), but also to a particular gendering of modern life (Haram 1999, 2005b). There are also discourses on AIDS and sexual behaviour which express less concern about the danger of contracting AIDS which, as I have argued elsewhere, is more commonly expressed among the younger male generations than among younger women and is linked to notions of risk, fearlessness, virility and masculinities (Haram 2005a, 2005b). AIDS is, obviously, a fundamental catalyst for the changes that are occurring, but the speed of the changes, the trajectories and directions are predicated on different factors that cannot be reduced to just AIDS. Certainly the AIDS epidemic is increasing the mortality rate and thus people are compelled to deal with a high number of funerals which entail a heavy burden economically, socially and emotionally. But I shall argue that the ongoing changes in the organisation of death, which I shall soon examine, deal with societal transformations embedded in more general processes of change at various levels. Above all, they focus on transformation from a more traditional economy – based on a strong code of mutual sharing and obligations – to a more individualised economy aggravating further socio-economic differentiation among people. I shall further argue that these changes also deal with a rationalisation of death at all levels of society, from the individual to the community and even at the level of the state, which has certain particular implications in the or222

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ganisation of death and funerary ceremonies. All these factors result in a moral concern especially among the economically disadvantaged members of society who feel they have not the resources necessary to attend to their dying kin in a proper and respectful manner. On the other hand, the wealthier part of the population uses funerals to make statements about their wealth and their standing in society as practitioners of tradition as well as representatives of modernity. But in so doing they contribute to a further increasing rift between the poor and the wealthy. In a study conducted among the poor sugarcane cutters of Bom Jesus in Brazil’s rural Nordeste State, Nancy Scheper-Hughes (1992) argues that mothers, due to the high infant mortality, were compelled to distance themselves emotionally and ceased to grieve over their dying children. Thus they would appear to be expressing some indifference to death and dying. In a time of AIDS and a resulting sharp increase in the mortality rate, particularly among the younger generations, could similar processes be taking place among the Meru? Listening to the many stories about their losses and women’s expressions, such as ‘we are tired of mourning’ and ‘we can no longer mourn honestly’, one might ask if they were experiencing similar feelings of loss and bereavement as the poor mothers in Bom Jesus. Were they expressing indifference, or were they bewildered and dejected and thus attempted to distance themselves emotionally from their losses? When they referred to the many deaths and funerals as a ‘waste of time and money’, what did they mean in this context? In this chapter, I wish to explore some of the complex issues related to AIDS, increasing mortality and the organisation of death and funeral ceremonies.

The Meru and the Lutheran Church As in much of colonial Africa, when the first missionaries from the Leipzig Mission Society settled among the Meru at the turn of the last century, they brought with them much more than a new religion and a belief system. In spite of the first violent encounter during which two missionaries were killed, the Meru gradually adapted to their new religion and soon Christianity, education and coffeefarming became hallmarks of leadership and status. Thomas Spear captures the close relationship between these factors in the caption 223

DLiv Haram ‘Christians, Coffee, Culture and Class’ (1997: 158). Gradually, the Christians set a new moral standard: the morally good Christians, who ‘have taken a step forward’ (nsirio wa mbele), were set in opposition to those who kept practicing Meru tradition, and who were referred to by the former as those who ‘have remained behind/backward’ (nsirio wa yuuya numa). Coffee cultivation and good market prices soon made these pioneering Christians the most prosperous in Tanzania, outdone only by their wealthier Chagga neighbours in Kilimanjaro. Owing mainly to overpopulation and a resulting scarcity of land coupled with a dramatic fall in coffee prices on the world market, many have met increasing hardship during the last decades and have been forced to generate new livelihood strategies – strategies in which ever larger proportions of households draw income from activities outside their home area (see Haram, 1999). The educated Christians who first pioneered are still the wealthiest. By the 1960s more than half of the Meru population were baptised, and in the 1980s practically all were members of the Northern Diocese of the Evangelical Lutheran Church of Tanzania (ELCT) (Nasari 1980; Puritt 1970). In the early 1990s, however, a conflict developed when the Meru wanted to withdraw their membership from the ELCT to form their own Meru Diocese, but were strongly rejected by the corrupt leadership of the ELCT. Ultimately, this conflict caused a fractioning among the Meru and, in turn, a violent uproar in which some Meru were killed by their kinsmen. Considering the strong position of the ELCT as a modern agent of change, the diocese conflict also caused problems related to matters such as education, health and community-development projects which all suffered from economic loss and thus were hampered in their daily operation. Thus the conflict has had – and still has – severe effects on people’s everyday life and well-being. Due to the conflict, many have withdrawn their membership from the ELCT. New church congregations have popped up and caused rifts between Pentecostal churches, which, prior to the diocesan conflict, hardly were found in this area, and Lutheran churches. Such conflicts have torn Christian communities apart (Haram 1999; Baroin 1996; Moore 1996). In the coming sections I shall give a brief summary of some of the transformations in the funeral practises. Due to limited space, it will

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be neither exhaustive nor will it cover all the modalities of the Meru organisation and management of death.

Funeral Practises and Mourning When the Lutheran missionaries settled among the Meru roughly a hundred years ago, the Meru believed in ‘Iruva’, the creator of everything.3 Iruva was the Giver of gifts, Feeder, Helper, Protector, and Healer. Unfortunately, the study by Raimo Harjula, God and the Sun of Meru Thought (1969), does not give much information about how they perceived of death and the regeneration of life before their encounter with Christianity. According to my informants, however, each clan had its sacred place – a tree, a stone or a lake – where rituals and sacrifices were carried out. Talking with old people about death and dying ‘in the old days’ (ya zamani, here meaning before Christianity), I was told that they used to practise ‘double burial’, that is burying their deceased twice. Firstly, the body (of adults of both sexes) was wrapped in a bull-hide, sitting in the (kumbeny), a ‘hole / grave’, somewhere on the forested hillside, to rot. Then secondly, the bones of the skull were collected and returned to the deceased’s homestead (wooro). In the case of an adult male, the skull was buried by the ‘stone’ (jiwe la wooro) situated at the centre of the deceased’s homestead. Female bones, on the other hand, were buried inside the woman’s house under the hearth, a fireplace built of three named stones and situated at the centre of the house. This form of double burial was, according to my informants, practised into the 1930s, perhaps longer, by the Meru who were not yet converted (see Spear 1995, 1997). Not only did missionaries encourage early converts to cease the practise of double burial, they also introduced graveyards. Although some of the educated elite began to bury their deceased family members in the graveyard, most people preferred, then as now, to be buried on the family’s farm – usually in the banana grove – the farming area immediately surrounding the family houses. Whereas some argue that they wish to bury their kin at home simply because there is no more space left at the churchyard, others express a wish to have their deceased buried at home, in the land of the ancestors. The importance of being buried at home is perhaps strongest expressed when a kin, who lives far away, dies. In spite of

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DLiv Haram the huge economic cost, a body is always brought back home by the family – often supported economically by other close kin.4 The place of burial is a place of much significance and of economic importance too. In a situation with scarcity of land, and ultimately of competition, the place of burial can be used very pragmatically by some members of the family to mark ownership in a particular piece of valuable farming land during an ongoing land conflict and thereby silence, force through or delay a final decision in an ongoing land case. When a death has occurred, close kinswomen of the deceased declare death, as shown above, to their communities by ‘crying in pain’; ‘ouiii-ouii-ouii-ouii’ (kuhiishira). More or less immediately, the deceased’s male elders of the extended family and the (male) ‘elders of the lineage’ (vashili), headed by the eldest in the deceased’s family, meet to discuss how to organise the funerary ceremony.5 They will make detailed calculations estimating how much food (meat, cooking oil, vegetables, rice and potatoes) and drinks will be needed. All incoming contributions by relatives, friends and neighbours will be noted in a book used only for this particular purpose by the elected male chairperson of the funeral. Young men of the extended family will travel by bus or by hiring a car and announce the death to those close kinsmen and friends of the deceased who are living far away. Others are informed through the radio, by telegram or by cell phone. The deceased is prepared, washed and dressed in his or her best clothes and finally wrapped in a piece of white cloth and laid in the coffin. A male body is prepared by male kin and a female by female kin. Usually the body is brought to the nearest mortuary and kept there until all the close relatives have gathered and the burial can take place. ‘Traditionally’, or according to ‘the Meru way’ (kwa Nrwa), a deceased male is mourned publicly for three days after the burial and a female body is mourned for four days before the mourners cease or, as they say, ‘break the mourning’ (ikwiimbo rembo). This gendered difference is practised because ‘a woman’s womb takes longer to burst’. Beyond this gender difference, the deceased should be buried and mourned according to his or her social standing. Accordingly, the old man and woman who have lived long and prosperous lives, who are blessed with lots of children and great-grandchildren and have 226

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lived as good and moral people, will be properly buried and heavily mourned. Such deaths are perceived as ‘good deaths’. They are given a proper funeral with many visiting mourners and plenty of food and drinks will be served. People will mourn the loss, but because the deceased lived a long and prosperous life and died of old age, the mourning will not be too hard to bear. When young people die, on the other hand, and especially before they marry and have children, the feeling of loss and bereavement will be great, but the funeral ceremony will be much smaller compared to that of an older and respected person. The grief will be even greater when parents are burying their own children. This is particularly the case when parents have struggled to give their children an education and have been looking forward to being supported socially and economically in their old age by their educated children. The death of both stillborn and newborn children grieves the family and close kin, but such bodies are simply buried in the banana grove, more or less immediately upon death. The ceremony is kept at a minimum and the few mourning visitors, who gather, will ‘rise up’ on the very day of burial, because ‘it is not yet a person’. Formerly, children did not participate in funerals. More recently, however, young adolescents participate as mourners of close kin. Most people seem to be very ambivalent about a child’s participation in a funeral and argue that it may endanger a child’s well-being. A child’s ability to cope with such a critical situation depends upon his or her akili (‘brain, intellect and experience’), that is, his ability to understand. A child losing a parent or a close relative will commonly be comforted by a close female relative and told that his dead mother or father is travelling to a distant place or gone on a long journey. When the child asks for the deceased parent in the weeks and months to come, he or she will be given the same answer until the child ‘gets tired of asking’ and ultimately, it is assumed, will forget. If the child is considered old enough, that is, having sufficient akili, he or she will, however, be told by a close female relative that the parent is dead. During the customary three to four days of mourning, visitors are served food of different kinds, tea and sodas. A ‘bull’ (numbe ya ifua) is slaughtered for the deceased to have plenty of meat as his or her last meal, which underscores the distinction made between physical and social death. Meru dishes, such as nswa (a mixture of cooked beans, maize and milk) as well as cooked bananas mixed with beans 227

DLiv Haram or with meat, are served. Roasted meat is also prepared and served. Whereas the cooked food is prepared and served by the in-married women of the deceased’s family, the roasted spareribs are prepared and served by the young and circumcised males of the deceased’s age group (nsero, plural vasero). During the last decades, new types of food, such as, spaghetti Bolognese and pilao have been served. The latter is a strongly spiced Swahili dish and is now commonly served at some ceremonies and parties. More recently, it has been served at funerals. Such new and modern non-Meru dishes are regarded with ambivalence. Traditionally, locally made beer (mbege) was brewed and brought by female relatives and served during the days of mourning. Since 1977 this practise has been banned by the ELCT and enforced by clan elders as it caused undisciplined drinking. The banning of beer and alcohol indicates the authoritarian and dominant position the ELCT has had for decades in Meru society, but as a result of the conflict with the Diocese, this strong position is now changing. Although some families serve beer, it is never served openly but enjoyed during the late evening hours. During the period of mourning, men will sit outside in the homestead among their age group brothers, while women will sit inside the house, also grouped according to their age groups. While the outmarried daughters of the deceased have to return to their husbands’ home in the evening and are strictly prohibited from sleeping in their natal home, male mourners belonging to the deceased’s age group remain during the night and will sleep outside only covered with their blankets. In-married kinswomen sleep inside the house. After this brief outline, I shall now show how families deal with the many deaths and funerals in a time when disparity is increasing while, at the same time, mutual sharing and obligations, based on kinship, can no longer be taken for granted.

Negotiating Time and Money Death is expensive. Because a funeral often draws together hundreds of visiting mourners who, according to custom, should be served a full meal along with soda or tea, often for several days, it is costly. In a study conducted in Kagera, in northwestern Tanzania in the late 1990s, the average amount households spent on death was $104.00 (US), of which $40.00 (US) was spent on medical costs and $64.00 228

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(US) on the funeral itself. This expenditure was unequally distributed; with some households reporting zero expenditure, other households had spent more than $1,000.00 (US) (World Bank 1997: 211–13).6 Death is, however, not only expensive. Considering the many days of mourning commonly practised by the ethnic Meru, it is also timeconsuming. Tanzanian governmental and nongovernmental bodies are concerned with the increase in absenteeism. This concern is partly due to an increase in disease among the employees, but it is also due to the time employees spend to care for sick family members, friends and colleagues and, finally, it is due to a high attendance at funerals (see also Barnett and Whiteside 2002: 244–45). The effects of such changes are also emerging among the Meru. For instance, at times, when visiting mourners come to give their ‘condolence’ (kwasha), they will be told – instead of being welcomed and given something to eat and drink – to return home, attend to their daily work and rather come back upon the day of burial. In this way, the family will be able to cut down on the expenses. While some visitors feel offended by this new practice, others feel relieved because they can resume work and attend to their daily duties. Although it seems to be an increasing trend to cut down on the days of mourning – from the customary three to four days to one day only – it is, however, as I soon shall discuss, filled with ambivalence far beyond a concern about time and money. As we will see, the cultural and moral prescriptions – the obligation to give the deceased a ‘proper’ funeral – are very strong. The families’ concern to give their deceased relatives a proper funeral is illustrated in cases whereby they will sell their only milking cow or even their last piece of farming land to pay for the cost of a funeral. At worst, the more well-to-do families may take advantage of such a situation and buy the farming land cheaply. Ultimately, such poor families are squeezed out from their home and forced to buy the cheaper but less fertile land on the plains below the mountain slopes. This spatial move is likely to be also a social move, distancing them further from their extended family and lineage. The emerging situation – characterised by the great increase in mortality and a further socio-economic differentiation whereby the poorer section of the population can no longer take the communal obligations of sharing of ones riches for granted – is underscored by a socio-economic and cultural paradox referred to as ‘the final wedding’ (harusi ya mwisho).7 In the coming sections, I will explore this 229

DLiv Haram emerging practice and discuss whether a proper funeral has become a privilege only for the wealthy.

‘The Final Wedding’: Has ‘Proper’ Funeral Become a Privilege for the Wealthy? According to my own observations, ‘the final wedding’ is a new funerary practise which began roughly five to ten years ago. The less prosperous people refer to it with some repulsion when they explain that ‘the wealthy families have begun to organise funerals as if they were weddings!’ There are several changes in the organisation and performance of the final wedding compared to the customary funeral, but one common feature is the display of wealth which is paramount on the day of burial. Whereas mourning women customarily should wear the ‘women’s cloth’ (kanga or kitenge) – one piece to cover her lower body and another to cover her upper body, including her head and hair – they will now dress in a sare, a uniform-like dress worn by mourners belonging to the same kin-category. Thus, for instance, while all the ‘younger sisters’ of the deceased wear a white sare, all ‘elder sisters’ of the deceased wear a black or a pink sare. The wearing of a sare has long been practised at wedding ceremonies, but now the sare is also worn at some funerals. Another new trend is the hair fashion. While mourning women, according to the cultural prescription, should cover up their hair by a kanga, they will now not only uncover their hair, but will go to the hair salon and have their hair styled according to the latest fashion. While this extra cost is covered by the individual woman, the sare is, however, an extra cost covered by deceased’s family. Both the sare and the uncovering of the dressed hair are trends which are perceived and commented upon as another display of wealth – at times referred to by the English term ‘showingoff ’. It is also commented upon as beautifying, or something worn ‘in order to look smart’ (ile kuwa smart). Considering that a funerary ceremony is marking a time of mourning and grief, such changes are to most Meru, what Mary Douglas refers to as ‘matter out of place’ (1980). In other words, to display wealth and beauty while mourning is not appropriate. Another feature which also makes this new form of funeral resemble a wedding ceremony is the hiring of a brass band with one or more trumpeters that play while the dead body is accompanied by the mourners from the mortuary, or the home of the deceased, to the burial site. 230

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There is one new practise, however, which is looked upon with more repulsion than all others, namely to hire professional cooks from Arusha town during the funerary ceremony. According to custom, the in-married women are obliged to cook for a funeral. Although these women at times are allowed to assist the professional cooks, many women still feel strongly offended by this new practise. Firstly, it questions a woman’s cooking skills, and secondly and closely related, her willingness to share of her food and thus her generosity. Complaints about a woman’s ability to cook in this context deal with her ability to cook non-Meru dishes and is thus closely associated with attitudes towards maintaining one’s (the Meru) culture. Others claim that the group of cooking women at funerals not only cook but eat so much that there is not sufficient left for the visiting mourners. Thus, it is cheaper, some claim, to hire one or more cooks. Furthermore, some people believe, non-Meru dishes taste better. To hire cooks from town has been practised among the wealthier families for years at wedding ceremonies, but going beyond family- and kinship duties at funerals seems to be a different matter altogether. There are several reasons why this change is seen with so much contempt by women, but, the most significant is, I believe, because it hits at the core of female respectability. It deals with her ability to cook and her willingness to share her food. While some people see these emerging changes as unproblematic and part of development and modern life (maendeleo), for most they are troublesome and of great social, economic and moral concern. On the one hand, their moral concern is primarily about how to give a ‘proper’ and respectful funeral, in which the deceased should be mourned for the customary three to four days, with plenty of visiting mourners who are offered plenty of food. On the other hand, the economization of death and funerary practises are increasingly being voiced by state (medical agents, hospitals and schools) and nongovernmental institutions. In the particular case of the Meru, such processes are, above all, expressed by the ELCT and their spokesmen who are requesting that their members reduce the days of mourning to one day only.

Rationalisation of Death and Mourning Most cultures and societies mourn their dead, but social and cultural responses to bereavement, grief and mourning vary in their 231

DLiv Haram manifestation and are expressed in diverse rituals. Among the Meru, as in many cultures, it is the women who should weep both individually and as a group (Bloch and Parry 1987: 215). According to the customary gender division for grief and mourning, men are expected to control and discipline their feelings of loss, while women are not only allowed to express their pain but are also expected to express such losses strongly and in public. Some would say that it is a woman’s work and obligation to mourn and weep for the dead. Pain, associated with loss, grief and mourning, is, according to both sexes, stronger in women because women give birth. Thus the very pain women feel during pregnancy and, above all, while in labour, develops their sense of physical pain and makes them emotionally stronger and more capable of carrying the burden of loss and grief. To mourn beyond the prescribed time and thus dwell with the past may cause a person to wither, and ultimately suffer from serious illness and die. Women express their sorrow in very intensive and dramatic ways, lamenting their loss directly to the deceased: ‘Why did you leave me behind? Why did you abandon me? Who will now pay for the children’s school fees? Who will feed us?’ Or, ‘I nursed and fed you, how will we manage without you?’ These feelings show their particular relationship to the deceased – often expressed in terms of a kind of economic reciprocity. Women’s expression of loss and grief is particularly strong immediately upon the death and during the burial. This is especially the case of the deceased’s daughters, who will express and dramatise their grief more intensely than other female mourners. In collectively prescribed ways of mourning, women will lament their bodily pain by throwing and swaying their body back and forward, while holding their arms above their head. Soon their bodies will begin trembling and while hyperventilating, they may go into a trance. While the wailing women’s bodies are still shaking, other women who are physically and emotionally more in control, will rush forward to embrace the grieving women to calm them emotionally, but also to keep them from harming themselves should they faint and fall to the ground. While they are ‘consoled’ (ilembera) with ‘soothing words’ (iwolisa ivaviywa), they will also be caressed: their chest, womb and other body parts will be rubbed with gentle care. While a kanga is tied around their waist, they will be told to ‘tighten your belt!’ (finga kitati) as it is held to give the 232

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woman relief from pain.8 The grieving women are also given water sweetened with sugar to drink as a means to regain strength. This liquid is also used to rub inside a grieving woman’s palms and under her feet. Some people believe only blood can kill such strong ‘thirst’, that is, pain. At times such heavily affected women will be brought to the hospital for intravenous injections with water, before they regain their strength. At the burial place when the mourning women are wailing with grief, and particularly when the coffin is lowered into the ground, it is not uncommon that a pastor or a church elder will reprimand the lamenting women telling them not to express their mourning in such ‘traditional’ and ‘pagan’ manners, but rather to discipline themselves and mourn in a ‘civilised’ way. The grieving women are further reminded that they are Christians, not pagans, and, according to the Bible, the deceased will be ‘resurrected’ (arukaa). At other times, they are told to keep quiet, and to pray instead of wailing. Meru women do not only have a particular role in mourning, they are also those who commonly carry the heavy burden of tending to the ill and dying. For obvious reasons, to give care and comfort for those afflicted with long-term diseases, such as AIDS, is a heavy burden, both financially and emotionally, and it is also a highly timeconsuming task. Women often talk about the devastating duty of caring for the person ill with AIDS. Anande, a woman in her forties, is a case in point. She cared for her brother-in-law, his wife and their newborn child who all suffered from AIDS and, ultimately, buried them. According to my observation, her case is, unfortunately, not unique. Anande managed the heavy burden, as she explained, ‘because I prayed to God. Without God’s help, I would never have managed to care for them or to bury them. It was a test from God!’ It is also expensive to give proper treatment to an AIDS patient because he or she needs nutritious food and medicine. Such expenses are often commented upon as being meaningless by caregivers. As one mother, who had lost her twenty-seven-year-old son to AIDS and then seven months later had to care for her thirty-four-year-old daughter, also ill with AIDS, put it, ‘I am willing to give anything for my daughter’s well-being. I may slaughter a sheep to give her nutritious food. I may even sell a cow.’ But then she adds, ‘What is the use? I will only lose both!’ Although this mother clearly expresses an ambivalent attitude towards the care of her daughter, it is not 233

DLiv Haram an expression of stigmatisation or a refusal to help her sick relative. Rather it reflects a vulnerable and meagre household economy. In the study conducted in Kagera region, referred to above, the average family reported that they spent more money on the funeral than on the treatment and care for the deceased while still alive (World Bank 1997). This is also often the case among the Meru, but for some it was repulsive: ‘How can a family spend lots of money on the funerary ceremony when they neglected the deceased while he was alive? The money which they are now spending on the funeral could have kept the deceased alive for many years to come!’

Beyond Reciprocity? The current transformations in funerary practises are for many a moral concern, and it increasingly causes conflicts not only within a community but also within extended families. The large number of obligations and claims towards one’s closest relatives in time of illness and death are more than most people, and especially the poorest families, can bear. At the same time, wealthier families increasingly bypass their communal obligations to share their riches and to assist poorer families. To bypass such communal duties by not giving support to your neighbours and friends is, however, a troubling matter. Furthermore, to celebrate death as if it were a wedding by displaying wealth while cutting down on the days of mourning is filled with ambivalence. It is not merely a matter of reciprocity, but seems to go beyond reciprocity. To allow a loved one to die neglected can have repercussions on the living and even on those not yet born. A case which underscores some of the current concerns is the recent death of an old and a respected woman named Elimbora. Some time before she died, she called upon her relatives and pleaded with them: ‘Please, mourn me properly – for four full days! I am soon eighty years old and I have been to many funerals in my lifetime, but I have never become poor because I attended a funeral!’ Obviously, Elimbora was fully aware of the emerging changes taking place and, therefore, she was worried that she would not be mourned properly. Shortly after this event, Elimbora died, and on the day of her burial, the ‘lineage male elders’ (vashili), contrary to Elimbora’s wish, decided to rise up on the first day and not the fourth. Upon the elders’ announcement, the deceased’s daughters immediately broke into heavy wailing, complaining on behalf of their mother by reminding 234

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the elders that their mother had pleaded with them to mourn her properly. Although the male elders had made up their minds, the daughters continued to plead: ‘Please, let us continue mourning and let us bring nswa [a Meru dish which is brought by the deceased’s daughters on the day when the mourners rise up] on the fourth day so that we can rise up together.’ In spite of the elderly woman’s last wish and her daughters’ strong pleas, the request was denied. The elders cut short the time of mourning. Hardly a week had passed when another death occurred in the same extended family. This time it was an abrupt death of a young man and, thus, a ‘bad death’. Elimbora’s daughters stated without doubt that ‘the days of mourning had not [after all] come to an end’, since they had ceased to mourn Elimbora too early; they now had to mourn another kin. For most of those who had been involved in Elimbora’s funeral there was no doubt; the sudden death was, if not a revenge, clearly a sign on the part of the deceased. Because her family had not fulfilled her last wish and thus not nurtured the bond to the dead, Elimbora had reminded them by hitting back with a curse. The fact that death and mourning are not only women’s work and obligation but also a duty that women themselves are much aware of, is obvious in Elimbora’s case. Elimbora’s daughters expressed their resistance through their collective wailing and plea to mourn their mother properly and, some would say, they were proven right. Obviously, unless one gives a proper funeral, the bond between the living and the dead is at stake. Unless the dead are shown respect and venerated, they may retaliate and harm those who are alive, jeopardising their prosperity and the regeneration of life.

Conclusion: Negotiating Death and the Regeneration of Life I began this chapter with a quotation from Beidelman’s work on the matrilineal Kaguru of southern Tanzania (1993). The close connection that Kaguru perceived between the past, the present and the future – or the dead, the living and those yet unborn – and the ways they are all brought together ‘in a moral entity with common concern and one fate’, resonate, I believe, with some of the problems which are now being faced by the Meru. This situation is particularly the case of the bereaved and mourning women in a time when 235

DLiv Haram their young people are dying, as they say ‘ovyoo-ovyoo’ – at random. ‘Proper and sustained relations between these two spheres – the living and the dead – ensure the future by maintaining the birth of future generations’ (Beidelman 1993: 105). Most Meru, we recall, have a positive attitude towards modern life and development (maendeleo) (Haram 1999, 2005b). At the same time, however, people realise that maendeleo has come at a cost – the cost of cultural loss and a modern life style – and along with it, the new disease, AIDS. Thus, some local discourses are linked to rapid social change and fragmentation and the idea that modern life has caused social and cultural chaos, particularly in young people’s sexual and reproductive lives. While some take a conservative stand and call for the moral values of the orderly past, others acknowledge that life must go on and, naturally, will change, for better or worse. I have argued elsewhere, that women play a specific role in the maintenance and reproduction of ‘Meru-ness’ (Nrwa den), the distinctive features of Meru culture and their way of life. I have gone so far as to suggest that the young and fertile woman must be kept in the home area to maintain and reproduce the Meru way of life (Haram 1999: 234ff). Thus their roles seem to share some similarities with Zulu women who, in their capacity as mothers, according to Harriet Ngubane, represent the overlap between ‘this world’ and the ‘other world’ (1977: 89). Meru women have to carry the burden not only of giving care to the afflicted and the dying, but they also play a crucial role in mourning the afflicted and the dead and to remind their social environment that the deceased must be properly mourned. It is their work and their duty. The drama of mourning should also be recalled: to convince her audience, a mourning woman must ‘prove’ that she is mourning ‘honestly’, that she is truly grieving the loss of the deceased.9 To paraphrase Maurice Bloch (1987: 214), their performances of grieving validate their pain. The grief and expressed pain are crucial for truth-claiming. I have shown that the Meru do not merely respond to the rising death toll by reacting to external forces which have become increasingly overwhelming to them. They also engage very actively in the negotiation of their position in the world. They act upon the social conflicts triggered by economic inequalities and the challenges of a world that is increasingly shaped by experiences of loss and suffering. Put differently, the ongoing social struggles are not only about 236

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the reproduction and maintenance of ‘Meru-ness’, but the Meru also engage in active discussions about how social priorities and relationships – that are partly defined with regard to an imagined past – can be organised in the future. I do not have any clear answer as to whether Meru women, as mothers, caregivers and mourners, are distancing themselves emotionally to the many deaths and losses they experience to the extent of the poor women in Bom Jesus in Brazil described by ScheperHughes (1992). They are, however, struggling to get by, by allocating their scarce resources, responding to claims by and obligations towards grieving relatives, neighbours and friends in a morally acceptable way and by maintaining good relations with the ancestors, who otherwise – they are reminded – would withdraw their protection from this world and the regeneration of life. In the introduction I asked what women meant when they lamented that ‘we can no longer mourn honestly’. Such feelings of loss and grief puzzled, for example, anthropologists such as Durkheim and Radcliffe-Brown, in coming to grips with people’s feeling and whether such expressions were true sorrow. Whereas Radcliffe-Brown (1922) underscored that ostensive feelings, at least must appear to be real to fulfil their supposed function, Durkheim (1965) argued that emotions expressed during funerary ceremonies are real feelings of sorrow. Durkheim in his theory emphasised the positive cohesive effect of public celebrations and a strengthening of social bonds as the unique function of ritual in general – including death and mortuary rituals. The moral pressure to express solidarity through sad feelings and honest mourning with those families who are truly bereaved is perhaps too heavy a burden when death occurs ‘ovyoo-ovyoo’, at random and in huge number, as in the current situation among the Meru.

Notes Grateful acknowledgement of funding is extended to the Tanzanian-Norwegian AIDS Project (1989–1992), the Norwegian Research Council (1992–1995), and the Nordic Africa Institute (2000–2005). I am especially grateful to the Meru people who generously have let me into their lives and to Jehovaroy Kaaya who assisted me in some of the interviews for the present work, as well as for the constructive comments by the convenors. 1. The Meru call themselves Varwa (singular Nrwa) which in their Kirwa vernacular means ‘to ascend/climb’ and refers to their ancestors who came 237

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2.

3. 4.

5.

6. 7.

8. 9.

from the Usambara. Puritt argues that the German missionaries referred to the Meru as ‘Waroo’ and that the term ‘Varwa’ was later anglicised to Meru (1970: 91). They think of themselves as a distinct group with a particular history that oversees their indigenous High Court (Nringaringa); the council of all clans (See footnotes 5 and 6). In this chapter I use Kirwa terms. The World Bank estimates that because of the AIDS epidemic, life expectancy in Tanzania by 2010 will revert to forty-seven years instead of the projected fifty-six years in the absence of AIDS. The crude death rate in 1995 was 19.5, and for 2010 it is estimated at 25.2 per 1,000 persons (UNAIDS/WHO 2002). ‘Iruva’, according to Harjula (1969), is derived from the proto- or ur-Bantu word for the sun (li-yuva). Many had spent all their money on treatment and care and, left only with an exhausted network in town, they had no other option than to return home for care before they died. The Meru used to be organised by localised clans, but with population density and land scarcity, this organising principle has changed and most clans now live scattered, albeit with some local concentration. In February 2005, the exchange rate for $1.00 (US) was about TZS 1,150. According to informants, the Swahili people living along the coast talk about both the ceremonies surrounding birth and death as a wedding, and death as the ‘final wedding’. Women used to wear a leather belt around their waist, which besides giving relief of pain, was worn to measure the womb during pregnancy. The Merina of Madagascar, Bloch argues, do not make the distinction which is common in European cultures between genuine individual feelings and artificial institutionalised expressions of feelings. For them the two are complementary (1987: 214).

Bibliography Barnett, T. and A. Whiteside. 2002. AIDS in the Twenty-first Century : Disease and Globalization. New York: Palgrave. Baroin, C. 1996. ‘Religious Conflict in 1990–1993 among the Rwa: Secession in a Lutheran Diocese in Northern Tanzania’, African Affairs 95(381): 529–54. Beidelman, T. O. 1993. Moral Imagination in Kaguru Modes of Thought. 1st Smithsonian ed. Washington: Smithsonian Institution Press. Bloch, M. and J. P. Parry (eds). 1987 [1982]. Death and the Regeneration of Life. Cambridge: Cambridge University Press. Dilger, H. 2003. ‘Sexuality, AIDS, and the Lures of Modernity: Reflexivity and Morality among Young People in Rural Tanzania’, Medical Anthropology 22(1): 23–52. Douglas, M. 1980 [1966]. Purity and Danger: An Analysis of Concepts of Pollution and Taboo. London: Routledge and Kegan Paul. Durkheim, É. 1965. The Elementary Forms of the Religious Life. New York: Free Press. 238

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Haram, L. 1999. ‘Women out of Sight: Modern Women in Gendered Worlds: the Case of the Meru of Northern Tanzania’, Ph.D. dissertation, Department of Social Anthropology, Bergen: University of Bergen. ———. 2004. ‘Prostitutes or Modern Women? Negotiating Respectability in Northern Tanzania’, in S. Arnfred (ed.), Re-thinking Sexualities in Africa. Uppsala: The Nordic Africa Institute. ———. 2005a. ‘AIDS and Risk: The Handling of Uncertainty in Northern Tanzania’, Culture, Health and Sexuality 7(1): 1–13. ———. 2005b. ‘“Eyes Have No Curtains”: The Moral Economy of Secrecy in Managing Love Affairs among Adolescents in Northern Tanzania in the Time of AIDS’, Africa Today 51(4):56–73. Harjula, R. 1969. ‘God and the Sun in Meru Thought’, Missiologian ja ekumeniikan seuran julkaisuja, 16. Helsinki. Mnyika, K. S., et al. 1994. ‘Prevalence of HIV-1 Infection in Urban, semi-Urban and Rural Areas in Arusha Region, Tanzania’, AIDS 8(10): 1477–81. ———. 1996. ‘Risk Factors for HIV-1 Infection among Women in the Arusha Region of Tanzania’, J Acquir Immune Defic Syndr Hum Retrovirol 11(5): 484–91. Moore, S. F. 1996. ‘Post-socialist Micro-Politics: Kilimanjaro, 1993’, Africa 66(4): 587–606. Nasari, J.T.S. 1980. ‘The History of the Lutheran Church among the Wameru (Varwa) of Tanzania’, The Faculty of the Lutheran Theological College, Makumira, Usa River, Tanzania. Ngubane, H. 1977. Body and Mind in Zulu Medicine. Cambridge: Cambridge University Press. Puritt, P. 1970. ‘The Meru of Northern Tanzania: A Study of Their Social and Political Organisation’, Ph.D. dissertation. Illinois: Graduate College of the University of Illinois. Radcliffe-Brown, A. R. 1922. The Andaman Islanders: A Study in Social Anthropology. Cambridge: Cambridge University Press. Scheper-Hughes, N. 1992. Death without Weeping: The Violence of Everyday Life in Brazil. Berkeley: University of California Press. Setel, P. W. 1999. A Plague of Paradoxes: AIDS, Culture, and Demography in Northern Tanzania. Chicago: The University of Chicago Press. Spear, T. (ed.).1995. Evangelisch-lutherisches Missionsblatt : Extracts on Arusha and Meru, 1897–1914. University of Wisconsin, Madison: African Studies Program. Spear, T. 1997. Mountain Farmers : Moral Economies of Land and Development in Arusha and Meru. Oxford: James Currey. UNAIDS/WHO. 2002. ‘Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections’. United Republic of Tanzania. . ———. 2008. ‘Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections’. United Republic of Tanzania. World Bank. 1997. ‘Confronting AIDS: Public Priorities in a Global Epidemic. A World Bank Policy Research Report’. New York and Oxford: Oxford University Press. 239

DChapter 11 Purity Is Danger: Ambiguities of Touch around Sickness and Death in Western Kenya P. Wenzel Geissler and Ruth J. Prince

Introduction This chapter is based on fieldwork in Uhero, a Luo-speaking village in western Kenya, from 2000 to 2002. During this time, before the advent of free antiretroviral treatment, HIV/AIDS reached epidemic proportions in western Kenya, and bodily suffering and death were widely shared experiences, commonly referred to as ‘the death of today’. The chapter explores illness, death, care, and the dying and dead body through the stories of a married daughter and her elderly father, who died within few months from one another, of chest infections, diarrhoea and physical atrophy. The analytical focus is on touch, defined as direct, physical or substantial engagement with another person and that person’s relations and effects. We argue that touch, as well as the purposive avoidance of touch, is central to the production and negotiation of relations in Uhero, to understandings of sickness in relation to ‘the death of today’, to care for the sick body and attempts to treat it, and to the constitution of sociality and renewed growth around the event of death. This emphasis on touch and its ambiguous effect is discussed in relation to AIDS-related and anthropological interpretations of touch and avoidance in terms of, respectively, danger and separation, or purity and pollution. 240

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Uhero and ‘the Death of Today’ In 2000, Uhero had approximately 1,000 inhabitants living in scattered homesteads interspersed with farmland and thorn bush, close to the shore of Lake Victoria. Most, if not all, homes depend on labour migration or cash earned through fishing and trading. The area had been designated a ‘labour reserve’ in the 1930s, and many of the older people in Uhero had spent extended periods, often years, outside it (see Southall and Gutkind 1956; Grillo 1973; Hay 1976; Parkin 1978; Stichter 1982). Economic recession and structural adjustment slowed this movement down (Cohen and Odhiambo 1989), and by the 1990s, the dominant movement was back to the rural home, or for many of the younger people, from one place – fishing coast, roadside market, plantation, town – to another (Government of Kenya 2001; Francis 1995). Meanwhile AIDS (known in Dholuo as ayaki, from yako, ‘to plunder’, ‘to grab’) was becoming increasingly visible. During our 2000–02 fieldwork, seventy-seven JoUhero (‘people of Uhero’), forty-one females and thirty-six males, died; thirty-seven of them were young adults (15–45 years of age).1 Almost every home in Uhero had lost family members, or was coping with serious sickness.2 By all accounts, HIV prevalence levels in western Kenya were extremely high by the late 1990s (see Kenya National Aids Control Programme 1998; UNAIDS 2000; Glynn et al. 2001; Iliffe 2006).3 While people were well aware of the spread of AIDS by sexual contact, the dominant messages of AIDS campaigns of risk and infection (“Say no!”, “stick to one partner” and “zero grazing”) seemed to have little relevance for young people and had little impact on HIV transmission (Geissler and Prince 2007a). This does not mean, however, that JoUhero were not concerned about touch and contact in relation to sexuality, sickness and death. On the contrary, there was a widely shared concern with the ambivalent potency and dangers of sexual touch and material contact. Instead of regarding touch as unambiguously dangerous, however, calling forth fears of infection and concerns about separation, protection and impenetrable boundaries, this understanding saw touch as an elemental foundation of kinship and social relations, with the potential to create as well as destroy, to give direction to as well as ruin, relations between people. Like the discourse about AIDS, this understanding of touch 241

DP. Wenzel Geissler and Ruth J. Prince was not uncontested, nor was it stable: it was at times elaborated into cultural rules of reified tradition or dismissed as ‘backward’ and ‘heathen’, threatening to Christian or modern identities. In this chapter we focus on these prevailing social concerns with the potency of touch in order to understand how ‘the death of today’ was experienced and negotiated. Concerns about touch were made explicit in situations of sickness and death, calling for care and love, bringing out conflicts and tensions, and raising questions about past events and the relations around the person. Yet the potency of material contact between persons and their relations was also a central concern around which sociality itself and its contradictions took shape in Uhero.

Touch and Sociality If one considers persons and bodies as individual entities that exist prior to their material and social engagements, touching another body implies a transgression of individual bodily integrity, which, depending upon circumstances, may be pleasant and/or dangerous. Touching sick, and particularly incontinent or decomposing bodies, is accordingly seen as a universal challenge to the individual, associated with notions of pollution and danger, disgust and anxiety (see Douglas 1984). Looking at touch of the sick and dying bodies in Uhero, we argue that while touching another body is indeed a highly significant and potent act here, it is not well understood within this familiar framework of individual bodily and personal integrity – or of ‘purity and danger’. Instead of an emphasis on keeping bodies apart, people here could be said to be mainly concerned with the capacity of substantial merging to create and give order to life, and to transcend individual death. Touching the other requires care and can be dangerous, but it is the necessary condition of human subjectivity and the growth of life. In Uhero, concerns with the transformative potential of touch, merging and sharing between persons informs the activities of everyday life – such as cooking, eating, sleeping, building, caring for the sick – as well as life transitions such as birth, death and burial. With whom, when, and where one engages in these activities are important issues, as they involve relations, time and place, lending such prac-

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tices significance beyond their mundane nature. Touch here implies consubstantiality, and it creates or transforms relations, but can also be destructive. Thus, while it must be enacted in certain social relations or in certain situations, it should be avoided in others. The last century has seen an objectification and elaboration of these customary habits shaping kinship relations into rules and of the illness that sanctions them, chira, into a body of ‘Luo Tradition’. This consolidation of tradition is shaped by its uneven opposition to Christian and modernist discourse, by concerns with ethnic identity, and by the pressure of the ‘death of today’ (Prince 2007). It calls for a return to ‘Luo rules’, which can provide a customary order in the present situation of confusion. The fatal sickness and death of adults is an aspect of everyday life in which explicit reference is made to these customary habits (chike), and regarding which the rules of ‘Luo Tradition’ (also chike) are likely to be evoked. This is due, firstly, to the fact that deadly sickness is potentially associated with the illness chira, brought about by rule violations; therefore, such illness is debated, always controversially, in terms of customary habits or rules. Secondly, death leads to funerals, the only regular public events in Uhero, in which various groups and interests interact and argue about these rules. Death and burial should be ordered by chike, since burying people in the right way is essential for the future growth of life. Thirdly, death, and particularly the death of young people, has become common due to the ‘death of today, multiplying these occasions to debate chike, chira and social and kinship relations, and radicalising concerns with right and wrong kinds of touch. Our concern here is with the messy, bewildering, and deeply distressing situations of illness and death, and with the social ethics that both shape these experiences and emerge from around them. To this end, the chapter examines the contemporaneous sicknesses and deaths of two members of a small household in Uhero – a young woman and an old man. Both died of chest infections, but their illness and deaths raised different concerns within the family. Our attention here is directed in particular at instances of physical touch between bodies and persons, and people’s reflections about these, in the months around those deaths.

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DP. Wenzel Geissler and Ruth J. Prince Otoyo’s Home Otoyo (1922–2001) was an elderly man known to everybody in Uhero. He dressed in the unusually tattered remains of the uniform and cap that he had worn as a watchman in Nairobi, where he had lived from 1952 to 1984 and where his second and – by 2000 – only wife, MinFlora (born in 1952), had given birth to their children. He often passed our home around mealtimes, settled on a rock under the tree in front of our house and waited for his share. Although this behaviour does not strictly conform to good village manners, one rarely heard jokes about the old man’s hunger and, as a senior person, he was given food first and generously. Neighbours and passers-by wondered why his wife did not feed him and what he had done to antagonise her. In the mid-1970s, Otoyo was given land by a kinsman in Uhero. When he returned jobless from Nairobi in the 1980s, people had begun to buy and sell land, and Otoyo sold half of his land. He then worked for some years as a watchman in a nearby market centre, but for several years he had been entirely dependent on his wife. MinFlora planted maize and millet around their home and grew some vegetables for sale. Only their youngest teenage son lived with them; their other children were married or stayed in town. At the end of 2000, their oldest daughter Flora Atieno (born in 1972) came to stay. During the previous years, her three children had died, followed by her husband. She had come home because she herself was unwell. At the same time, Otoyo’s persistent cough, which together with his hoarse voice had become his trademark in the village, evolved into a chest infection, and the following year, father and daughter were intermittently sick. Flora stayed some weeks, left when she felt better, and returned again when she worsened. The father died in the following dry season, followed after two months by his daughter. Their sicknesses were serious and death was anticipated (although not explicitly), suggested in conversations among family members and neighbours and in the practices of care around them. Yet the two sicknesses were very differently regarded by JoUhero: one was the expected, natural death of an old man, which prompted few speculations about the causes of his illness; the other was the unnatural (albeit now tragically common) death of a young woman. There were many theories about what might have caused her illness, 244

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chira, and about suitable treatments. Both deaths placed a great burden on MinFlora, who cared for her husband and daughter with no other support than that of her youngest, school-age son and the occasional help of her neighbours and church friends.

The Sickness of a Daughter When Flora Atieno had rested from her journey home, she came with her mother to greet us. She was thin, and her mother had to support her when she was walking. MinFlora asked us for medicines for her daughter’s cough, which we did not have, and we agreed instead to go to Bondo hospital for a chest x-ray (the first step towards diagnosis and treatment for pulmonary tuberculosis). We asked how long she had been sick and regretted the question when Flora looked away and replied, ‘not long’. To admit that she had been ill for a long time would have amounted to an acknowledgement that her illness was the ‘death of today’ and that she had given up hope. When we spoke about the illness and the visit to the hospital, Flora seemed to have few expectations: ‘Will I be well, really, the way my body looks?’ Yet she and her mother continued to seek treatment from different sources, and Flora remarked that she felt better than when she arrived. When she left our house she agreed: ‘I shall be well!’

Return of a Daughter We came to regret a second question we asked during this first conversation: ‘Why did you return here [to your parents’ home]?’ Flora’s sad answer, ‘I was alone there [in my husband’s home]: there was nobody to wash me’, should have been self-evident. Flora’s husband had died, and a mother-in-law would be inclined to accuse a young daughter-in-law, whom she hardly knows, of causing her son’s death – particularly if the son and his wife had lived away from home in town. Moreover, daughter-in-law and mother-in-law are not ‘free’ (thuolo) with each other until they have lived together for many years, making it difficult to attend to a sick daughter-in-law, even if one wished to. In this patrilineal and virilocal society, a daughterin-law is gradually incorporated into her new home through having children, cultivating food and sharing daily life. Only in the course of this process does a suspicious young stranger from another clan 245

DP. Wenzel Geissler and Ruth J. Prince gradually become the senior woman of her husband’s home (Ogola 1994; Kurtz 2002). This transformation of relations and persons in time is complicated by urban residence, the commodification of land and growing land pressure (Okoth-Ogendo 1976; Pala 1980; Shipton 1988; for neighbouring Kisii see Silberschmidt 1999). It is ruptured by the increasingly common death of young men and women. As a result, young women and their children are often left in an interstitial position for which customary rules make little provision – they do not really belong on either side, and quarrels frequently accompany the return of a sick, married or widowed daughter to her father’s home (see Whyte 2003 for Uganda). Flora’s mother took her in, washed her, fed her and cared for her. Her care was her responsibility as a mother; it was, as she described it, ‘love’ (hera). While she and others acknowledged that it was hard at times, it remained her unquestioned burden. However, the fact that Flora was sick and potentially dying in the home was heavily contested. Flora’s father argued that a married woman should not be cared for in her parental home as ‘she belongs there [to her husband’s home]’. The subtext was that he was worried he would have to bury her in his own home. According to patrilineal, virilocal logic, a married woman’s body belongs to the place of her affines. If her body were buried in the earth of her father’s place instead of that of her husband, this would not only affect her children’s possibilities to move on in life, get married, have children and thrive, but also impact on the further life and growth in the paternal home, and particularly her siblings’ progress in life. Her body, even beyond her death, belonged to one set of substantial relations, mediated through the land, and would have been misplaced and potentially dangerous in another one. Flora, however, was fortunate in that at the time she came her mother was the de facto head of the home and took the view that ‘when the illness is severe, there are no rules’ (ka otuo ahinya, kwer onge). In other cases we knew, fathers insisted that their daughters had to return ‘home’ (that is, to their marital homes), irrespective of the conditions that awaited them there – not least because eventually they would have to be buried there. We agreed on more than one occasion to transport a dying woman to her marital home in order to spare her the journey in a crowded matatu. In the case of another neighbour, the mother insisted on nursing two dying married 246

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daughters in her own kitchen hut. Her husband, a retired railway clerk, who lived most of the time with his second wife in Nairobi, argued, ‘She is now theirs! She does not belong here!’ and threatened to chase them all out. When the first girl died, he persuaded us to transport her body to ‘where she belongs, according to Luo ways’, to be buried there. Together with the mother and other kinswomen, we reached the remote village in the neighbouring district at night to find that the husband’s people did not want to bury the girl either. When the second girl died, the father reluctantly agreed to bury her in the village, but outside the fence, not inside their home: ‘in the bush, as Luo rules prescribe for mature women from the home (wagogni, sg. migogo)’. This practice maintains a separation between the women of different lineages and protects the home: dead young women, especially if childless, may be dangerous spirits. Burial of a married daughter in the bush on the perimeter of the home has become common in Uhero and indicates the marginal position of young married women, whose belonging is disputed in their marital and in their natal homes.4 The case reveals a characteristic conflict between a mother, pragmatically concerned to care for her sick daughter, and her traditionalist husband, in this case a retired civil servant, who preferred city life to his village home but who reiterated throughout the proceedings, ‘These are our Luo ways!’ But even for mothers the burden of sickness can be too much. Thus, after several months of Flora’s illness, even MinFlora suggested to her daughter that she should ‘go back home’ because, as she confided to us, ‘I do not see that she’ll be well’. Flora was unhappy but stayed; some neighbours were critical of these remarks, but others admitted that ‘this illness is so hard’ (tek) that not even a mother can cope with it: ‘Soon not even mothers [will] bury their daughters.’

Shaping Growth and Blocking It As in many cases in Uhero when long-term illness was accompanied by persistent diarrhoea and atrophy, Flora’s illness was described by many JoUhero as chira, the outcome of ‘breaking’ or ‘spoiling’ chike, commonly translated as ‘rules’. As chike are supposed to shape practices of touching, sharing or mixing between persons, chira can be interpreted as the illness resulting either from unwanted mixing or 247

DP. Wenzel Geissler and Ruth J. Prince when proper mixing does not take place, the resulting confusion or blockage being expressed in wasting away of the body, skin disease, diarrhoea and lack of growth.5 Chira often strikes the person involved in the act, but can also affect a third party; for example, when a man who has slept with a woman outside the home holds his child before cleansing himself (see also Whisson 1964: 286; Abe 1981: 127). The substance of an infected relative passed on through touch here causes chira.6 In relation to spoiling kwer and to chira, this substance is sometimes referred to as chilo, which is commonly translated as ‘dirt’. Given this English term’s negative connotations and the concerns with pollution that it evokes (sometimes also among JoUhero), it must be emphasised that this substance or mixed matter, which arises from and subsequently embodies relations, is understood mainly as a positive force, as the substrate from which life grows.7 This force can also be dangerous, but this ambiguity is unavoidable. Indeed, it must not be avoided in the sense that notions of ‘pollution’ or ‘taboo’ would suggest; rather it must be channelled towards future growth. Purity (the absence of the substance of one’s relations) is only a concern in specific situations that require momentary freedom from ‘dirt’ – such as when handling ancestral force or particular medicines. ‘Dirt’ is what the person is made of, and its absence would imply the person’s death.8

The Elaboration of Chira and ‘Luo Rules’ Chira is an illness that for Luo and other Kenyans has come to be associated with cultural identity and tradition: the ‘Luo illness’. The prominence it gained over the twentieth century was related to the elaboration and hardening of traditional rules surrounding kinship and social relations (Parkin 1978: 152). Since the 1990s, traditional rules have proliferated in public discourse and productions as well as in everyday life.9 The understanding of chira itself has shifted from being a misfortune affecting the growth of the family, expressed in the wasting away of children’s bodies, to being a disease of adults, increasingly interpreted as a punishment for transgression of rules (which circumscribe particularly women’s behaviour) (Prince 2008). Cast as laws of tradition, chike can be wielded with authority. However, in the flux of everyday life, faced with sickness, chike remain 248

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contested and open to interpretation. People invoke rules mainly retrospectively, trying to make sense of what has happened, and to seek a remedy. There are many possible interpretations, and often little consensus about which is correct. While some may invoke chira to place the blame on a person’s sexual behaviour, for others chira points to one’s relations and their actions, thus stressing the embedded nature of a person’s sickness.

Chira and AIDS Chira resembles AIDS in its symptoms, but their relationship remained a puzzle to many people in Uhero. The two illnesses can be regarded as distinct. Chira is the ‘illness of long ago’ (tuo machon), ‘of home’ (mar dala), ‘of the land’ (mag piny), associated with Luo identity and an expression of the crisis of Luo life. Ayaki is ‘the new illness’ (tuo manien), ‘from outside’ (mar oko), ‘from town’ (mar taun). The transfer of matter between bodies is central to both illnesses, but material contact has a different meaning. Chira arises from inside, from a confusion in the substantial relations between people that otherwise are necessary to sustain life. AIDS is an illness from outside, an extreme kind of ‘germ’. It is conceptualised in the metaphors of intrusion, battle and eradication that have shaped tropical medicine, and it reduces the relationship between body and illness to an either/or situation: contaminated or clean, ‘positive’ or ‘negative’. It renders illness and touch a matter of life and death, ‘yes’ or ‘no’, as anti-AIDS campaigns tirelessly proclaim. Accordingly, conceptualisations of illness as ayaki or chira lead to different responses, one of which defends the boundaries of one’s body and group in the spirit of radical hygiene, while the other attempts to restore relations. Putting things in such antagonistic terms overlooks, however, the fact that the two exist within the same social space (and even in the same body). The two illnesses can be glossed as identical – as when old people said ‘we used to call it chira but now we know it as AIDS’ – or as intimately linked: today, both are perceived as ‘illnesses of wandering’ (tuo mar bayo; bayo can also refer to promiscuity), of the excessive, undirected movement and improper sexual relations that are part of modern life. In spoken discourse, people tend to construct relatively clear distinctions, but in everyday life these are often 249

DP. Wenzel Geissler and Ruth J. Prince blurred. In practice, any long-term illness with the above symptoms can be either or both.

Treating Flora’s Sickness Neither chira nor AIDS is easily spoken about in specific situations of sickness. Flora and her mother told us and other neighbours that her body was aching and that she had diarrhoea and left us to draw conclusions. When implying chira, people refer to rules of conduct, saying ‘this was bad’ (rach) or ‘that was difficult/hard’ (tek) to indicate that a particular act spoiled kwer. Members of the household may point out one or the other wrongdoing (e.g. ‘This illness is seeing his father naked!’). Thus the act stands for the illness, and the term chira is not spelled out. If the manyasi (the medicine for chira) that some family members know of does not work, people suspect that the illness is a matter of more than a ‘small chira’. The ‘root of ’ (tiend) chira should then be investigated through divination, either by a diviner (ajuoga), or more commonly by a priest of one of the African independent churches. Even in the diagnosis, the word itself is usually omitted and a turn of phrase such as ‘it is in their home’ suffices. Manyasi for ‘big chira’ is prepared by a healer, often the same who divined the cause.10 Those affected or implicated should share the mixture, thus restoring creative ties between them (and possibly between the living and the ancestors who reside in the land, although people rarely spell this out). Some treatments, especially if the patient is very sick, are lengthy, expensive and administered by the healer. In other cases, the manyasi is taken home from the healer in a jerry can and drunk when required. In the case of Flora’s sickness, several different diagnoses and treatments were discussed and tried out simultaneously. During her first stay in Uhero, Flora went to a Christian diviner (jalam) of Legio Maria.11 He folded a piece of paper into the Bible and when he removed it, he claimed that the writing that had appeared on the paper suggested that Flora’s father-in-law had built his home before his elder brother, spoiling kwer and bringing chira over the home. Therefore, Flora’s husband had died, as well as her children. He told Flora to buy cloth and candles so that he could perform a healing ritual, and to go back to her marital home to get some of their bed sheets. Flora went and returned with the sheets, but when we later asked 250

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her about the ritual, she said that she had not bothered, perhaps because of the expense needed to obtain the required items. During this period, MinFlora approached Judith, a well-known healer for chira who had recently moved away from Uhero. However, Judith was unwilling to become involved in Flora’s treatment because, she said, for a long time she had been telling Flora, whose children she had tried in vain to treat, to leave the husband’s home where the mother-in-law did not follow the rules properly, thus ‘spoiling the place’. But even when Flora was sick herself, she time and again returned to her husband’s home as soon as she felt better. Now it was too late, Judith implied, for treatment. These two alternative diagnoses illustrate the range of explanations that surfaced. During Flora’s year-long sickness, other possibilities were discussed in the family and among villagers. Many agreed that this was indeed chira; most JoUhero agreed that it came from the husband’s home, but nobody knew exactly what had gone wrong. There were many stories and many potential mistakes that might have been committed in the past. To fulfil all rules would be a challenge even in an idealised, bounded, stable community; it is impossible for contemporary JoUhero, who move between different places, live among other people who follow different habits and rules, and die in the midst of life, when at least half of their ‘things’ (gigo, singular gik, a common synonym for kwer) have not been completed. Parallel to this search for the spoiled rule or relation that had harmed Flora, other attempts were made to alleviate her suffering. MinFlora’s neighbour, who was a nurse, visited regularly, sometimes with medicine, and, when Flora became very weak, with intravenous fluids. She was convinced, as we were, that Flora had tuberculosis – something Flora herself suspected – and, together with MinFlora and Flora’s grandmother, we took her to the district hospital for an x-ray. After a long day’s waiting and payment of fees, we were told that the x-ray machine had broken down. As we returned late in the evening, we were relieved that we did not have to leave Flora behind on the ward, among the other thin bodies, scarcely visible under their sheets, some attached to intravenous drips, their mothers, sisters or wives sitting at their bedside with a bottle of water or some food. Later Flora returned to the hospital, got an x-ray, which confirmed that she had tuberculosis, and returned to Uhero with a course of treatment. After some weeks, she could eat better and she 251

DP. Wenzel Geissler and Ruth J. Prince gained some weight. Feeling stronger, she decided to return to her husband’s home.

Caring After some months away from Uhero, Flora again returned to her parent’s home, weak and in acute need of the care that her in-laws were unwilling to give her. Her mother took care of her, feeding her, washing her, and helping her to ‘go outside’ when she could no longer do this alone. She was helped only by Flora’s last born brother, but – as in similar situations in Uhero – the direct bodily care was deemed too hard for the boy. The weak and incontinent body possesses a fearful, threatening potency, which children are too vulnerable to face. When talking about the problems of caring, people distinguish caring in the general sense of ‘being with’ (rito, literally: ‘waiting’) from touching (mulo); from mediated physical contact (e.g. touching somebody’s bed sheets); and from washing (luoko) another’s body, particularly the genital area. Invariably people caring for a relative describe washing the body and dealing with faeces and the smell of illness as the most difficult part, which requires ‘strength’ (teko) and ‘courage’ (chir). Just as, in other contexts, the permeability of the body and the crossing of body boundaries are regarded as creative and valuable, the dangerous side of permeability comes to the fore in the case of the seriously sick body. However, it is also this aspect of care that most clearly reveals and creates hera, or love. Thus, although engaging with bodily fluids is far from pleasant, it is understood as a practice that requires as well as creates close relations. Ideally these should be bonds sanctioned by the customary habits of touch that restrict exposure to nakedness and touching certain body parts within specific kin relations.12 In the case of people dying of old age, a man should be cared for by his wife, and a woman by her daughter, younger co-wives or sisters-in-law. These rules seem quite straightforward, but when discussing different cases, they are qualified in two ways. Firstly, the danger inherent in touch changes with the age of the involved persons: children can be washed without constraints; strict rules apply for married, sexually active people; women beyond child-bearing age pose much less of a problem, even

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if they have to be cared for by a son or daughter-in-law. Thus, every case is different. Secondly, what can be done always also depends on the circumstances; the sickness and death of a loved person transcend social rules.13 While following rules has probably always entailed complications, the present situation, in which many more people die young, makes the question of care a conundrum and often forces people to care for those they love even when the rules suggest that they should not. The omnipresence of premature death, illness and suffering often gives ‘arguments of affection’ precedence over ‘arguments of culture’ (see Whyte 2005: 155). Despite rules of avoidance and patrilineal chike according to which a woman should be cared for and buried by the people of her marital home, mothers are the most reliable source of care. However, the rules may also be invoked to justify refusals to care for a sick relative. For a young woman like Flora, whose relations with co-wives and mother-in-law were strained, the mother was the only person who could and would care for her – the only unquestionable relation. MinFlora took up the burden, washed, combed and fed Flora, and kept her company, although, as the months passed without improvements, she did occasionally wonder whether she was doing the right thing. Until her death, Flora remained tidy and clean and she died not alone, but with her mother. Throughout those last weeks, Flora lay in her mother’s kitchen hut, or, during the hot hours of the day, outside on a mat. People came to visit, brought gifts of food, or just sat and chatted. Flora was always dressed neatly and her hair was combed. When Flora became so weak she could not eat, MinFlora asked us to take them both to the district hospital, so that Flora could get IV fluids. After some days there, together with her mother, Flora died. Flora’s sickness and death, and MinFlora’s struggle to treat and to care for her daughter, revealed to us the importance of kweche and chira in the social understandings of touch and in the production of social relations and social and temporal continuity; at the same time, it shows how personal relations and emotions – feelings of love that are not prescribed by rules – cut across rules and are lived within a supposedly rule-bound practice. And although there are occasionally debates about one broken rule or another, it appears as if most JoUhero know that the rules are there to serve the relations, not to be served by them.

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DP. Wenzel Geissler and Ruth J. Prince The Death of a Husband The long sickness and death of Otoyo, Flora’s father, created quite a different situation. Like Flora, he was sick for several months, and, as in her case, villagers regularly came to visit the home and sat with MinFlora and, when he still could speak, with Otoyo. However, the attempts to treat Flora’s illness were many and diverse, while nobody proposed treating Otoyo. The causes of Flora’s illness were the subject of much speculation, whereas the rumours surrounding Otoyo’s imminent death were few and did not open up courses of healing action (as the explanations in terms of chira had for Flora). His suffering led some people to recall his possible past sins. Village gossip had it that Otoyo had ‘sent’ (iro) ancestral forces to kill his late uncle’s son, in order to possess his land (MinFlora and Otoyo’s ‘brother’ had allegedly brewed the liquor with which the deadly strike had been administered, and villagers interpreted MinFlora’s turn to her Legio Maria church as her attempt to assert her innocence or atone for her deed). This rumour was promoted by the alleged victim’s kin. They interpreted Otoyo’s and his daughter’s illnesses as the revenge of the slain man and thereby inserted them into a much deeper narrative of past (wrong) acts and relations beyond the home and the realm of the living. No healing action, however, was proposed and the issue was not debated openly. What people did discuss among themselves (and occasionally with MinFlora) was how Otoyo was dying and how he was cared for: for while Flora was cared for by her mother in spite of the rules, Otoyo was neglected by her despite marital obligations.

Expected Death For several months, Otoyo lay in his wife’s hut, in the ‘bedroom’ behind a screen of sheets; at first he could still go outside to relieve himself, greet and speak, but gradually his capacities left him. MinFlora was expecting his death. Early during his sickness, we proposed to take him to the district hospital in Bondo for a chest examination, but MinFlora argued that if her husband were admitted to hospital, which was quite likely, nobody could care for him there, since she herself had to return home to care for her sick daughter. The hospital staff did not engage in care (rito, as opposed to ‘treat’, thiedho) 254

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such as washing, feeding or changing the beddings, and these tasks were left to relatives who usually stayed with the patient, sharing his bed or sleeping beside it. Otoyo’s only relative in Bondo was his ‘sister’ who had a business there, but her sisterly obligation to care could not be counted on.

‘She Should Remember Her Love!’ One afternoon we dropped by Otoyo’s home to find MinFlora entertaining a group of other village women from the Legio Maria Church with tea and sweet potatoes. Flora took her tea outside, resting in the shade of a tree, as rules proscribed that she could not sit and eat with her mother during this official visit. The older women talked gaily about the past, the ‘sweetness’ of the men in ‘those days’ (the 1960s) depicted on the photographs hanging on the walls, of smart suits and miniskirts, ‘Drum’ magazines from South Africa, mobility between the new African nations, dancing and town life. Meanwhile, behind the curtain Otoyo lay silently. MinFlora’s proud and affectionate looks at the tall, well-dressed man in the photographs contrasted starkly with what seemed like a complete lack of interest in the dying man.14 When we walked on to the next neighbour’s house, we found another group of women in conversation about MinFlora and Otoyo, whom some of them intended to visit later in the day; they were talking about washing, bodily fluids and decay. When we entered, Philgona was just exclaiming, ‘I will go and tell her that she should wash him. If I smell that smell again, I’ll just walk out.’ Turning to another elderly woman she continued: ‘Now you think your husband loves your co-wife more, but it is you whom he loves most and when he is sick and old, he will wait for you. But look at MinFlora: she goes to church while her husband is sick at home.’ She continued. ‘They should forget their fights now, and she should care for him. She should take his sheets to the lake every day and wash them. And she should wash him, as he smells. He is going to rot. And if he dies rotten, it will bring shame to his wife, because it is she who should attend him. She knows everything about him; she can wash him all over’. Laughing, she illustrated with her brightly coloured scarf how MinFlora should take a sheet and fold it under him ‘like a nappy, like a child’. Philgona remembered that when her husband died, ‘I 255

DP. Wenzel Geissler and Ruth J. Prince did not love him very much and he had often beaten me. But then I thought of the beginnings, how we could stand on one spot for a long time and talk – then I would wash him anyway.’ The other women confirmed this opinion: ‘She must care for him. It was he who married her’, although they agreed it was very hard work for a wife, perhaps the hardest of her labours. They encouraged Philgona to talk to MinFlora, which she did, but to no avail. While the women’s outrage about the man’s condition was sincere, it seemed that, as in the case of MinFlora’s Legio visitors, there were other issues at play in this conversation, underscoring the potential divergence between ethics and experience, prescriptive behaviour and practice, and the tensions and transformations which even tender loves undergo.

Death One morning, the wailing of MinFlora and Flora from next door told us that Otoyo had died. When we went over, some neighbours had already helped to move the bed into the living room of the hut, where Otoyo now lay under a white sheet. His photographs hung above him beside his suit and his ties. MinFlora sat on the ground at his feet. Her clothes were torn and she was naked to her waist. Perhaps she was following the rules requiring the widow to undress (e.g. Mboya 1983: 112). Perhaps it was because her painful skin disease, which she called owang’a (‘he burned me’) and others suggested was herpes zoster, had become unbearable. Her little grandson sat beside her and broke leaves from the branch of a plant and carefully applied the white sap to the sores that covered her chest and shoulders. Their silence was periodically interrupted by MinFlora’s prayers, wails (‘ah, now I am left alone’) and dialogue with her dead husband. MinFlora’s son and other young men were busy building a new kitchen hut (the old one had burned down some months earlier). This was now an urgent task; after the burial of the husband and until the widow has accepted a new husband (or levir, jater) into the home (tero mon), which MinFlora had indicated she would not do, no building can be undertaken.15 The liminality of the pre-burial period reveals the dead person’s continuing ability to act upon his surroundings through his body’s presence and the possibility of its physical contact with others. As long as the dead body is within reach, the person is said to be still alive, and life in the home can 256

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go on. Bodily participation in action seems here detached from intention. Death is a process. For weeks Otoyo had slept most of the time; he had then first stopped speaking, then eating, and eventually breathing. Nevertheless, he was still there – invoked in the incessant wailing chants of the funeral guests – gazed at, washed, undressed and dressed.16 This conceptualisation of death as an incremental process also played into people’s explanations for MinFlora’s sickness and suffering. A ‘burn’ like hers was thought to have a human cause and, because of the poor care he received from her, the late husband himself had reasons to take revenge. The fact that her illness had started some days before Otoyo died was no counterargument. It only showed just how badly she had cared for him as, people argued, ‘he had probably been already dead; only his heart was still beating’. Thus, his spirit was already free to strike back while his body was still being mistreated.

The Funeral Otoyo’s funeral was riddled with conflicts (a common feature of Luo funerals; see Cohen and Odhiambo 1992; Kisiara 1998). Like most village funerals, people disagreed about who was to provide food for the celebration, and about who should pay for the coffin (2000 Kenya shillings [KSh], ca. £15), the cloth to wrap the body (500 KSh), and other expenses such as the loudspeakers for the dance (thum, also ‘disco’) during the nights following the burial (500–1,000 KSh). The village women supported each other and MinFlora, gathering firewood, fetching water and contributing small amounts of food to feed the visitors, such as beans and vegetables, chicken and fish, but none of the men seemed willing to shoulder the larger expenses. After several days the deceased’s ‘sister’ in town bought a coffin, but nobody volunteered to pay for its transport to the village until Otoyo’s ‘brother’, Okoth, came to ask us. Food – that is, appropriate food for the occasion – was also a problem. MinFlora had no cattle and Okoth, who was Otoyo’s nearest kinsman, refused to provide a bull to be slaughtered for Otoyo, because he suspected MinFlora of hiding her cattle with other people (which women indeed often do). Thus there was no animal apart from a goat. Everybody agreed that this was a shame for the family, 257

DP. Wenzel Geissler and Ruth J. Prince since a senior man (jaduong) should have a bull. The animal slaughtered at someone’s funeral is at once a tribute to the person and her or his embodiment. The animal’s value should be commensurate with the deceased’s status and it should have the same sex. The slaughtering, partition, cooking and eating of the animal implies sharing its meat with the ancestors and possibly with the deceased himself. The animal is thus central to people’s relation with the dead and to the ties among the living. The fact that nobody was ready to step into the breach and provide a bull was symptomatic both of the lack of respect that Otoyo’s ‘brothers’ had for him and for the state of social relations among his and Okoth’s clanspeople, as well as among the villagers as a whole. This was a miserable funeral, and everybody was aware of it. MinFlora’s painful body, Flora’s thin figure and slow movements, and an unusually high number of confrontations, culminating in Okoth beating MinFlora for hiding her cows, added to the gloom of the occasion. Maybe it was because of this that the old ladies asked again and again for chang’aa, local liquor, to be bought to ‘warm their hearts’.

The Dead Body The greatest problem, and the one that created the most contention, concerned Otoyo’s body itself. It was lying on the bed in MinFlora’s house, and as the funeral preparations progressed slowly. and because the hot season was at its height, it decayed rapidly. Okoth, whose role as injectionist included the task of preserving Uhero’s dead bodies during the pre-burial period, had given his ‘brother’ a few injections during the night after his death, but he had run out of formalin, and the body began to smell badly. The coffin was delayed by the craftsman (who had sold it to somebody else), and even Okoth got worried: ‘He will swell and we will not be able to fit him into the box’. When the coffin finally came, the body was bloated and was dripping through the bed it rested on. Okoth could not be found, and nobody was inclined to shoulder his ‘brotherly’ task of washing the body. ‘Washing’ (luoko) the body – a necessary ritual before burial – implies cleaning face, hands and feet, and dressing and fitting the corpse into the coffin. In the past, according to Mboya, the earth which had mixed with the water that had washed the body was used in post-funeral rituals; this suggests that the flow of water over the 258

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dead body implies not so much the mere removal of dirt, but also the creation of substantial continuities (1983: 113, 118) akin to the therapeutic washings of sick children we have described elsewhere (Geissler and Prince 2010a,b). Washing is said to be a ‘very difficult’ (tek) thing to do. Touching the dead body is the equivalent of washing the naked living body or its private parts, because death is likened to nakedness (duk).17 Thus, while everybody passes the coffin to view the face of the dead before burial, close affines must not do so and should not even come near the grave when the coffin is taken there. If the deceased’s affines come later and visit the funeral (i.e. pay a formal visit to the burial home, share a meal and in this way ‘attend’ the funeral, which might have taken place months ago) the grave is often covered with sheets or blankets to prevent the in-laws from seeing the dead in his dead/naked bodily state. These rules of avoidance resemble those that govern the washing of a sick person’s body. Like them, they are not absolute laws, but considerations that are adjusted to particular situations. Moreover, different people give slightly different answers when asked who should wash the dead. Some say, in agreement with Mboya (1983: 113–14), that a man should be washed by his sisters-in-law (see also Kisiara 1998: 129), while most find it appropriate for a male corpse to be washed by a ‘brother’ and for a female one by a ‘sister’, ‘sisterin-law’ or ‘co-wife’ – that is persons of the same sex, generation and ‘side’. In sickness the domestic obligations of a wife to her husband seem to overrule the dangers of nakedness, whereas after death, nakedness appears in its raw, absolute state. If unavoidable, daughters may wash mothers and vice versa, but daughters-in-law cannot touch their mothers-in-law and vice versa, as they are on different sides and must not confront each other’s nakedness, but must ‘respect’ (luoro) their difference. These prohibitions concerning dead bodies are generally observed and the ‘wrong’ kind of people must leave the house when the body is washed. Rules are, of course, not all that is implied in the problem of washing. When we asked an elderly neighbour why washing the dead was so ‘difficult’, she just raised her eyebrows, pointed at the puddle of dark liquid that had gathered under the bed and told us to do it ourselves. JoUhero openly talked about the mundane dimensions of smell, decay, rotting and of revulsion, and no piety prevented people who came to view the body from occasionally gasping for air at 259

DP. Wenzel Geissler and Ruth J. Prince the door, or shuddering when they left the room. Details – such as how the decaying flesh sticks to one’s fingers when a dead body has stayed too long – were discussed casually by the guests, who all agreed that this is the worst kind of touch. It is part of life and of dealing with and loving one’s relatives. Yet whenever, after Otoyo’s death, people talked about these unpleasant sensations, which during the week before burial became increasingly hard to avoid, their indignation concerned not just the physical state of the body, but also the bad relations that had allowed the body to become so dirty and now rotten. The descriptions of the flesh of the deceased sticking to the hands of the relatives who wash him seem to confirm Sartre’s assumption of a ‘natural’ horror provoked by the dissolution of what ought to be solid and unified (such as a person’s body) and of the boundary between self and other (1943, quoted in Douglas 1984: 38). Does this suggest that there is, in the end, a point at which the continuum of different human experiences converges? Such universal reactions to the corpse would seem to be in agreement with Van Dongen and Riekje’s description of Dutch nurses having difficulties in touching the private parts of dead bodies or closing their orifices, because ‘they feel they are crossing a boundary that cannot be crossed’ (2001: 159). Yet we are not sure about this similarity: for JoUhero the touching of the corpse, however disgusting, is valued as a form of care, of attending to another person. In contrast to British reactions, described by Lawton, in which dissolving body boundaries equalled the disappearance of personhood (2000), or the Dutch case in which touching the corpse was seen as violating the intimacy of the dead, in Uhero the person is still acknowledged and related to beyond his death and the opening of his boundaries. He is present among the mourning relatives who sit around his bed or mat, and even children do not seem fearful of him. In other words, while British and Dutch caring staff experienced personhood obliterated or challenged by contact with a dead body, for JoUhero this, in a sense, worst touch still seemed to affirm nearness with the departing person. The ritual significance of the water flowing off the dead body similarly suggests that the decomposing body and its liquids, irrespective of the universal response to the smell of decomposition, remained here a source of vital force, rather than being a depersonalised embodiment of death and a contagious threat to other persons.18 260

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Loving People Everybody, initially including Okoth, agreed that Okoth was the ‘brother’ who together with other men of the lineage ought to wash Otoyo and put him in the coffin. However, when the coffin was delivered, none of these men could be located, and the heat increased every day. In the end, three men not related to Otoyo’s clan took heart and did the work. These three were very different from one another. The most senior was Matthew (born in 1930), a retired veterinary laboratory technologist. He was a saved Christian and the lay reader of the Anglican Church in Uhero.19 A friendly man, who had been given land in Uhero in the 1970s, he was universally liked and respected in the village. When he finally came to deal with the body, wearing the white rubber boots and gloves that were the insignia of his profession, he said he did it because ‘it must be done and I am a Christian’, while others said it showed how Mathew ‘really loved people’. The second man was Okumu (born in 1925) an elderly, rather poor neighbour of Mathew who was, like Mathew, widely held to be a ‘good person’ (nga maber), although women especially sometimes made fun of him. Being old he was assumed to have the ‘strong heart’ (chuny matek) needed here. The third man was much younger and lent the two others his bodily strength: he was a man (born in 1973) from Kisii (a Bantu-speaking area to the east of Luoland) who had come to Uhero some months earlier as an ‘inheritor’ (jater) of a young widow. Still referred to by villagers as ‘the Kisii-man’ (JaKisii), this young, intelligent and educated but orphaned and destitute newcomer impressed the village community with his strength and ‘clean heart’ (chuny maler) on this day and on other occasions. If his engagement was part of an effort to become part of the community he intended to stay in, he could not have chosen a better moment to demonstrate his belonging. The smell of the body lay by now over the entire compound, and the three men had to go to the door of the hut every now and then to get air. Mathew alone wore rubber gloves; the others used their bare hands. Their faces and voices betrayed that this was hard work indeed, although the literal washing seemed to be reduced to a minimum for which a small basin of water was enough. After they had fitted Otoyo into the coffin, they placed it on chairs in front of the house, to the left of the door. The other people kept away from the 261

DP. Wenzel Geissler and Ruth J. Prince activity, forming a large circle around the hut. Only Otoyo’s small grandson sat curiously in the doorway and looked on, and later he stood quietly by the coffin. When they had finished, the three men called for hot water and soap and washed thoroughly. At other occasions we similarly observed how people expressed their desire to clean themselves after performing this task (‘I touched a dead person [asemulo ng’amotho], give me water to wash!’), but nobody ever suggested that touching a corpse was particularly dangerous in the sense evoked by, for example, chira or by biomedical concerns about infection. Touching the dead body is unpleasant, and yet (or therefore) it is a work of love; it enacts the bond between humans through which life, sociality and the person herself are created. Everybody present agreed that the men who washed Otoyo ‘loved people’ (hero ji) and that they were ‘big/old men’ (jomadongo) – in contrast to Okoth, who evaded his obligation and denied his relation with Otoyo. The praise, especially for Mathew, was unambiguous. Although in other situations, particularly in the case of birth, people expressed concerns about the use of gloves signifying a refusal to engage with the other, nobody commented in this situation on Mathew’s rubber gloves or boots, but saw his act as one of love. Significantly, all three men were in different ways marginal to the village due to their origins and character; but this did not prevent them from engaging in this kind of touch, which according to the rules should have taken place within close kinship bonds.

Conclusion The intertwined stories of Flora and her father – MinFlora’s daughter and husband – and their serious sicknesses and eventual deaths highlight the importance of touch for social life in Uhero from two different angles. On the one hand, concerns with chira and kwer – as emerged in the explanations for Flora’s grave illness – reveal the importance of touch in customary practices and kinship relations. Touch is what must occur for sociality to be produced and reproduced in time – a powerful essence of being human. Rules or chike are there to modulate the possibilities of touching the other and its creative potentials. These rules should be understood less as ‘moral laws of chira’ (Ocholla-Ayayo 1976: 146–49) than as markers that draw attention to the fundamental power but also the vulnerability 262

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of that moment of complementation by the other from which social/ human life grows. On the other hand, the problems of touch as they arose from dealing with Flora’s and Otoyo’s sick and dead bodies allow us to see touch as a social practice in context and process. It becomes clear that touching is not rule-bound individual behaviour concerned with pollution or avoidance, but is rather realised in shifting and varying relations that are not given by any rule or genealogy, but continuously made and remade in these instances of touch. Both aspects of touch feed into one another: the rules explain sickness and shape care for the other body, and rule-infringements in care and healing or during the funeral may in turn produce new illnesses. Rather than being concerned with ‘pollution’ by what is ‘beyond the confines of sociality’, as Douglas might have put it (1984: 95), we argue that in Uhero both rules and practices of care for the sick and dying constitute touch as the essence of sociality. Touch is a sticky glue of sorts, but not in the functionalist sense of that which keeps things in place and the system stable, but as a substrate from which growth and transformation spring. It is the vital importance of touch within social relations that makes it at times problematic and turns it into the subject of debates about sociality and ethics. Touching the disintegrating body stands here as an extreme case, requiring strength and courage and (in principle) previous kinship bonds. It requires and realises love – the unfolding of a surprising nearness between one and the other in moments of encounter – even (or particularly) in the unpleasant and slightly unusual circumstances of the funeral described here.

Notes We would like to thank the people of Uhero for their hospitality. Philister Adhiambo Madiega worked with us, first as an assistant and later as a student, and nurtured our interests and our language skills. Susan Whyte and Susan Benson, among others, provided precious advice. Research was supported by grants from the Danish Council for Research in Developing Countries, the Wenner-Gren Foundation and the Rivers and Smuts funds, Cambridge. The Danish Bilharziasis Laboratory and the Institute of Anthropology, Copenhagen; the Institute of African Studies, Nairobi; the Department of Social Anthropology, Cambridge; and the Division of Vector Borne Disease, Kisumu, all provided academic and logistic support for which we are grateful. 263

DP. Wenzel Geissler and Ruth J. Prince 1. The deaths amounted to 8.4 per cent of the 914 inhabitants in 2001. Seventeen of these deaths occurred among children under 15 years of age, thirty-seven among adults aged 15–45, and twenty-three among adults above 45 years of age. The actual number of deaths was probably higher, as we only registered people who had been residents in Uhero for more than six months prior to each census round (conducted biannually), and thus missed those who returned from the city and died within half a year, as well as those who left Uhero and died elsewhere. 2. By 2000, 8.0 per cent of the children in a neighbouring division had lost one or both parents (Lindblade et al. 2003); caring for ‘orphans’ has, in spite of extended kinship practices, become a problem (Nyambedha et al. 2003). In 2005, after the end of our fieldwork, the Kenyan government introduced free Voluntary Counselling and Testing (VCT) and Antiretroviral (ARV) treatment and care for HIV patients through the government health system. By 2006, some younger JoUhero had taken HIV tests, but few had gained access to ARV treatment because the drugs and important diagnostic facilities were as yet unavailable at the local Health Centre and because of communication problems with biomedical staff. ARV treatment could potentially change the situation of death described here, but this has not yet happened in Uhero. 3. Some figures suggest prevalence levels as high as 30–40 percent. This is explained to some extent by the combination of labour mobility, the flow of young men and women into fishing ‘beaches’; casual work in plantations and in the transport industry; and the intimate links between countryside and towns with high HIV prevalence (e.g. Bishop-Sambrook 2003, quoted in Iliffe 2006: 167, note 54). 4. People are buried in their rural homes. In the case of a married man and woman, this is his homestead on the land of his patrilineal clan (or, if he has not yet made his home, his father’s homestead). A wife should be buried beside the house built for her by her husband. In his own home, a man is buried beside his wife’s house; in his father’s home, he is buried beside his mother’s house, like unmarried sons and unmarried, pre-adolescent daughters. 5. Such contact or ‘mixing’ (riwo) between persons is made particularly through sexual intercourse and sharing food together, but can also be made through touching cooking utensils or material things associated with a person’s sexuality and fertility, such as houses, beds, bedclothes, pots and hearthstones. 6. When a serious kwer has been spoiled in a particular place, the earth there retains the potential of chira, and in some cases this may even force families to abandon their homes or not to grow food in a particular place. The same notion of earth as the embodiment of the relations between ancestors and the living is expressed in the idea that food grown on a piece of land that has been sold – which is in principle a violation of kwer, offending the ancestors – would be fatal if it is eaten by the land’s original inhabitants (Shipton 1992). 7. In the sense in which Jack Goody understood concerns regarding contact with the corpse and the widow as being about ‘the dirt of physical intimacy’ (1962: 57–59). 264

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8. Similar interdictions around sharing food and sexual contact among other east African groups have been termed ‘pollution forces’ (for the Kenyan Marachi see Whyte and Whyte 1981; Whyte 1990: 106–7; for other groups speaking Nilotic languages, see Evans-Pritchard 1956; Hutchinson 1992). However the term ‘pollution’ is inappropriate. It focuses on separations and designates boundary crossing as transgression, and it implies a misleading opposite: purity, giving it positive value. The importance of chike suggests instead that mixing, merging and crossing-over are central to the production of social life; anti-structure, rather than structure, is the creative force of sociality (Turner 1967). So-called ‘pollution forces’ are often interpreted as mystical abstract rules, enforced ultimately by ancestral spirits or God (e.g. Whyte and Whyte 1981: 72; Evans-Pritchard interprets them as ‘offences against God’ [1956: 189]), while a closer look at kweche suggests that they arise out of social relations and produce those relations; they are not supernatural but social, not structural, but embedded in bodily experience and everyday practice. 9. For example, in publications such as Ogutu 1995; Raringo 2001 (which lists 330 ‘rules of the home’); radio programmes (e.g. ‘Chike Luo’, KBC, September 2001); internet sites (www.jaluo.com); and popular songs (Prince 2006, 2008). 10. Its ingredients are unknown to the patients, but it is said that, apart from herbs, it may include earth from the place where the kwer was spoiled or from another spot that has been in contact with the persons involved, pointing to the engagement of ancestral force in the causation and healing of chira. 11. The Legio Maria Church was established in 1962–63 by two Luo Catholics dissatisfied with the priests’ monopoly over active ministry, and gained followers to become the largest independent African church with a Catholic background (Schwartz 1994). 12. Three basic modes of differentiation – gender, generation (and intragenerational seniority) and affinal relations – operate additively in these restrictions of touch and nakedness, making (in principle) an older same-sex sibling the ideal carer, and a cross-sex child-in-law the least suitable one (see also Heald 1999: 136). Across these rules of respect, there is a clear understanding that the mother-child relation is the most reliable source of care. 13. The degree of touch that is permitted within different relations and the complexity of people’s considerations emerge from the following advice given by Judith, the elderly healer of chira, who acknowledged the need for pragmatic solutions: ‘A son should not care for his mother, but if he has to he should not spend the whole night in her hut, but leave before sunrise.’ Especially once he is married or has commenced sleeping with girls, care is a problem. In any case, ‘a son must not wash his mother’ (others say that he ‘cannot wash her, but only pour water over a piece of cloth covering her’). He can wash her bed sheets, but once she has died he must be treated with manyasi lest he will get ‘the illness of touching the mother’ or 265

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14.

15.

16.

17.

18.

chira. The medicine is to be boiled with the water for food and eaten with it, after the mother has been buried. A girl, however, can wash her mother without problems, since she is ‘the mother’s relative (wat min)’; but if a girl washes her father, her mother-in-law or father-in-law (the latter being the least acceptable and, indeed, imaginable), manyasi must be taken. With grandparents both men and women are free and no problems arise from washing, but the grandfather’s genitals nonetheless pose a problem for granddaughters. Similarly, Min Flora’s present dress – floor-long Legio robe, headscarf and rosaries – was in sharp contrast to her appearance in the old photographs – straightened hair, mini skirts and shiny earrings. Nobody knew exactly what had occurred between the couple during thirty years of marriage and history, but the women in the room seemed to share an understanding of men and marriage, and although they rarely expressed disrespect for their husbands, their amiable celebration at this deathbed seemed not without some mischief. According to the Luo rules, a widow should be joined with a new man before re-entering social intercourse (tero mon, ‘widow inheritance’). After the burial of the husband’s body and until she has accepted a levir, the widow carries chola. If the widow enters people’s houses, her touch endangers their children, and she cannot share food. Chola is the paradox of an out-of-touch turned into dangerous touch. In the past the widow was taken by a classificatory brother of her husband, but today, a professional inheritor is often hired to sexually cleanse her. While in the past the post-burial liminal period could last for a year, today there is a tendency to shorten and simplify the procedures and elaborate them as rules, to the detriment of the widow and the benefit of the male patrilineal kin. Thus, the levirate should today be entered after few days; in this particular case a man called Okoth, the head of a neighbouring home who was a distant ‘brother’ to Otoyo, was particularly eager to ensure this, but MinFlora was very reluctant to be inherited. Unlike Kiswahili, Dholuo has no word for ‘corpse’. Until his burial when he becomes a ‘grave’ (liel), the dead body is referred to as ‘dead person’ (ng’amotho) or ‘person’s body’ (dend ng’ato), suggesting that the body does not become a thing but remains engaged in concrete social relations as long as he is physically present. Even the grave has a potent material force while the spirit continues to have needs; we often observed graves, some a year old, covered by sheets because the dead had felt ‘cold’, or because it was to be visited by the deceased’s in-laws who ‘should not see their relative naked’. People were probably buried naked in the past (Millikin 1906). The association between nakedness and death points at the absolute otherness that both represent. Luo attitudes resemble in this point the (more explicit) ritual significance attributed to the decomposition of the corpse that has been described e.g. in Borneo (Metcalf and Huntington 1991: 72–74) and Madagascar (Bloch 1986: 43–45; Bloch and Parry 1982: Introduction). 266

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19. Saved Anglicans follow the conventions of salvation introduced by the Revivalist movement in East African Anglican Christianity, which began in the 1930s (Church 1981). In Uhero, Saved Christians formed a significant minority. They refused to engage with customary practices, ‘things of the earth’ (Prince 2007; Geissler and Prince 2010b).

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